Developmental Issues From Infancy to Old Age


The effects of developmental issues on individuals, couples and family relationships

• The psychological, psychotherapeutic and health implications of developmental issues and their effects

• The understanding of the impact that personal and social insecurity, social stress, low educational levels, inadequate housing and malnutrition have on human development.

What are the Major Theories of Child Development?

A number of theories exist in the area of early childhood development that attempt to explain how young children develop and learn. A theory is an organized or systematic way of thinking about a particular concept. According to Trawick-Smith (2003), "A theory might include beliefs about the nature of learning and development, the role of heredity and environment, and how adults, other children, schools, and communities contribute to the development process" (p. 36). In the field of early childhood development, some of the prominent theories of child development are maturationist theory, behaviorist theory, Erikson's psychoanalytical theory, Piaget's cognitive development theory, Vygotsky's sociocultural theory and Bronfenbrenner's bioecological systems theory.

Maturationist Theory

Arnold Gesell was a proponent of one of the oldest theories, the maturationist theory. This theory focuses mainly on maturity and little on environmental influences. Basically, this theory maintains that children mature as they grow older and personalities and temperament will be revealed with little influence from the surrounding environment. Gesell identified developmental milestones or events that are to occur at specific age levels which have been used as helpful guidelines for parents to track their child's development. From a maturationist's perspective, children's environments should be adapted to their already genetically determined needs and characteristics.

Behaviorist Theory

The behaviorist theory proposed by theorists such as John Watson and B. F. Skinner focuses on a child's experiences. At birth, this theory suggests that a child's mind is a "blank slate" to be gradually shaped by the environment (e.g., personality, reading abilities). This theory suggests that adults critically shape a child's learning through positive reinforcement. Positive reinforcement suggests that if a desirable behavior is rewarded, the appropriate or desirable behavior is more likely to recur. From a behaviorist's perspective, adults can use positive reinforcement techniques (praise, modeling, rewards) to shape a child's development in a desired direction.

Psychoanalytical Theory

Erik Erikson's psychoanalytical theory focuses entirely on personality formation. Erikson suggested eight "ages" individuals progress through from birth to adulthood in order to feel self-fulfilled. Erikson looks at each age or stage as a struggle between one positive and one negative emotional state. Erikson's stages are characterized by a particular challenge of developmental crisis which is central to that stage of life and must be resolved. The resolution of the developmental crisis is dependent upon the interaction between the individual's characteristics and the support provided by the social environment. The first three stages involve conflict of children through 6 years of age. The last five stages involve conflict of children six years of age to adults. In infancy, the first conflict is trust and mistrust. Emotionally secure babies come to trust that their caretakers will nurture and take care of them. Children who are abused come to mistrust the world and may be unable to advance to later stages of emotional development. During the toddler age, conflict between autonomy and shame and doubt occurs. Once the basic stage (trust) is met, toddlers will be apt to become more independent of adults and often assert and rebel against authority (i.e. the terrible twos). Autonomy is acquired during this time. Autonomy is characterized by a toddler's feeling of independence and uniqueness apart from his/her parent(s) or caregiver(s). Doubt and shame happens when children at this age are overly restricted from attempting to venture out and may eventually become shy and lack confidence and self-esteem. Similar stages involving conflict continue through to adulthood. This perspective suggests that adults can enhance a child's emotional well-being by providing appropriate opportunities for the resolution of the developmental conflict or crises.

Cognitive Development Theory

Jean Piaget's cognitive development theory views children as "busy, motivated explorers whose thinking develops as they act directly on the environment" (Berk, p. 212). This theory focuses on mental growth as being the most important element in a child's development. Piaget believed that individuals progress through four ages of cognitive development: sensorimotor (0-2 years of age), preoperational (2-7 years of age), concrete operational (7-11 years of age), and formal operational (11 years of age - adulthood).

At the sensorimotor stage the thinking involves forming knowledge via the senses: sight, sound, touch, taste, and smell. It is at this stage that object permanence (objects exist whether perceived or not) is developed. Also, during this stage, goal-directed actions occur using trial and error attempts to reach a particular goal (i.e. reach a toy or open a box). During the preoperational stage, preschoolers begin to use internal thought and symbols to solve problems but rely heavily on perception and physical cues and are therefore easily fooled by the "appearance of things." This perspective suggests that we can get to know about how children think by listening carefully and observing ways in which they solve problems and that children should be guided in actively constructing knowledge.

Sociocultural Theory

Lev Vygotsky's sociocultural theory considers the effect of culture when looking at child development and child behavior. This theory suggests that social interactions need to be understood as a part of the cultural setting and not separately in order to understand the contribution of social interaction to cognitive development and thinking. Vygotsky's theory places a greater role of language, social interaction, and society in child development than Piaget's cognitive development theory. Whereas Piaget emphasized children being active, constructive beings independently, Vygotsky supports that guided participation as an interactive process by adults is vital for cognitive development. Vygotsky maintains that caregivers and parents scaffold (use language to guide thinking) children's learning. If tasks are too difficult for a child, Vygotsky maintains that the adult intervene by asking questions or giving hints that assist the child in completing the task or solving the problem. These periods of indirect guidance are called "zone of proximal development." Vygotsky maintains that indirect guidance, when a child is within the zone of proximal development, promotes powerful learning. From the sociocultural perspective, knowledge construction can be enhanced by use of rich language and provided for peer interactions.

Bioecological Systems Theory

The bioecological systems theory focuses on the interactions and influences of the outside environment on the child's development. This theory differs from other major theories in that it emphasizes the influence of the outer world (community, school, and political systems). Urie Bronfenbrenner suggests that all settings need to be considered when explaining child development. This theory is typically graphically represented as circles within circles (like target rings) each ring depicting a different interactive system. The inside circle represents the child. The first layer outside the child's circle is the microsystem which suggests the most influence on the child's development. The microsystem consists of the family, school, child care providers, peers, and all experiences and influences that have a direct affect on the child's immediate environment.

The second layer is the mesosystem which depicts the interactions and linkages of the interconnections of the microsystem (i.e. parents are affected by child care providers and child care providers are affected by parents). The third layer is the exosystem which depicts additional ecological systems that affect child development more indirectly. The exosystem consists of such systems as legal services, social services, neighbors, extended family, and work place. Even though that don't actually "touch" the child's life, they indirectly affect the child's experiences. The last layer in the bioecological system is the macrosystem. This level contains laws, customs, and values of a particular society or cultural system. Even though these institutions don't directly affect the individual child, they can have a strong influence on the child. The chronosystem reflects the dimension of time in regard to the child's environment and is illustrated with a line that cuts across the entire circle which emphasizes the effect of time across the entire system. This system can be external factors such as a death of a parent or internal factors such as the aging of a child and the changes that occur over time. This theory has been viewed as culturally sensitive in that it focuses on all of the influences (social, political, and economic contexts) in which development occurs. From this perspective, positive child development occurs when all influences, both direct and indirect, are considered. Refer to Activity #3 for a diagram of the bioecological systems theory.

Knowledge of Developmental Theories Influence on Interactions with Children

Each theory provides beneficial information in understanding why children behave, grow, and learn as they do. Parents and caregivers should determine their own theory about how children learn and develop. Theories can assist in making decisions about the care of young children and provide guidance to parents and caregivers. Having a clear idea of one's own beliefs can lead to consistent parenting and caregiving. The parents or caregivers' decisions about dealing with specific situations will depend on their own personal theory about child development. Decisions will be made consistently and specifically and useful strategies can be used depending on one's own theoretical perspectives. A working knowledge of how children develop and learn helps to provide children with the conditions in which to lead happy fulfilled lives.

Nature versus Nurture

The age old debate of nature versus nurture as a means to describe differences in child development still exists today. The underlying question of this debate is, whether genetic factors (nature) or environmental factors (nurture) are more important in determining child development. Nature refers to biological or hereditary information that affects child development and learning.

Nurture refers to the day to day interactions children encounter in their environment. In the previous lesson we discussed the dominant theories of child development, some of which were based on the premise of the influence of nature, while others were based on the influence of nurturing. The stance a theory takes on nature versus nurture is directly linked to its explanation of individual differences in child development. Some theorists emphasize heredity and characteristics remaining stable through the years and if environment is considered at all, it is thought that early experiences establish future patterns of behavior. Other theories stress that change is possible if new experiences are supported. Ultimately, if parents or other caregivers believe that development is largely due to nature, they would not be providing children with activities to stimulate change. If parents or caregivers believe in the importance of early experiences, they would provide stimulating activities at an early age.

If parents or caregivers believe that environment has a large influence throughout a child's life, then they would make sure children would have high quality experiences past their primary years into adulthood. Overall, the debate over nature versus nurture has created various ways to view child development. Following below are various nature and nurture influences on child development.

Factors that May Lead to Atypical Child Development

Previously we discussed typical child development and the vast differences that can exist. Some newborns have developmental differences caused by unfavorable conditions before, during, or after birth due to genetic and/or environmental influences. Factors that may lead to atypical child development are addressed below.


Sometimes atypical child development can be the result of teratogens' harmful agents in the environment. There are many teratogens in the environment such as the sedative drug thalidomide, which was found to have drastic effects in that it produced gross malformations of the embryo's developing arms and legs. Exposure to Agent Orange and other chemical weapons have resulted in developmental delays for young children. Smoking, alcohol, and/or drug use during pregnancy has also been linked to developmental problems at birth.

Drug abuse during pregnancy will have a significant effect on the developing fetus. Maternal use of cocaine, heroin, and similar drugs during pregnancy has been associated with miscarriages, premature birth, physical malformations, breathing difficulties, and higher risk of death at birth. Babies born addicted to cocaine and heroin suffer through withdrawals at the onset of life. It is also important to mention that paternal risk factors, such as the father's drug use may also damage chromosomes and cause malformations in the fetus. Cocaine ingested by the father adheres to the sperm cell and is present at the time of fertilization and can cause problems for the development of the fetus.

Maternal smoking has also been linked to miscarriage, premature birth, and low birth weight. Research suggests that the effect of smoking can be long-term in that children of smoking mothers during infancy are less responsive, more sluggish, and fussier (Chavkin, 1995; Diaz, 1997) and in later years, less competent readers and exhibit social adjustment problems (Fergusson, Horwood, & Lynskey, 1993).

Maternal alcohol consumption during pregnancy can lead to impairments in the newborn's nervous system, mental retardation, hyperactivity, and deficiencies in physical development. Adolescents exposed prenatally to alcohol are more apt to exhibit learning and socialization problems (Colburn, 1996).

According to Mathias (1995), "more than 5 percent of the 4 million women who gave birth in 1992 used illegal drugs while they were pregnant." Even though this study is somewhat dated, it contains extensive research data on drug use and pregnancy and provides relevant yet startling information. The National Institute on Drug Abuse (NIDA) sponsored-survey on drug use during pregnancy also found 20.4 percent of pregnant women smoked and 18.8 percent drank alcohol at some point during their pregnancy. Note the table that illustrates pregnant women's usage of various drugs based on race. African-American women ranked highest in use of illicit drugs during pregnancy (11.3%) compared to white women (4.4%) and Hispanic women (4.5%). Use of alcohol and cigarettes were found to be highest by white women (23 % and 24.4 %, respectively) compared to African-American women (15.8 % and 19.8 %, respectively) and Hispanic women (8.7 % and 5.8 % respectively).

Over the counter or prescription drugs can also pose a threat to prenatal development. Such drugs as aspirin, tetracycline, and Valium have been know to cause complications and health problems. The drug diethylstilbestrol (DES), a drug early on prescribed to prevent miscarriage showed onset of difficulties on the offspring at puberty. Daughters were noted to have a higher rate of cervical cancer, vaginal abnormalities and are more likely to miscarry (Nevin, 1988). Male offspring were also found to be more likely to have genital abnormalities (Wilcox, Baird, & Weinberg, 1995).

Additional teratogens from those mentioned above include: exposure to radiation (x-rays), exposure to mercury and lead compounds (via car exhaust, paint, and other industrial materials) , and maternal diseases (e. g., rubella, AIDS, and toxoplasmosis--parasite infection caused by exposure to cat feces or undercooked meat). Children and pregnant women are the most vulnerable to mercury and lead poisoning. Pregnant women and children can incur damage to the nervous system, brain, and reproductive system by inhaling mercury vapors or through consumption of contaminated fish or birds.

Other Maternal Factors

In addition to avoiding the above mentioned teratogens, there are numerous ways in which expectant mothers can promote the development of their unborn child. Prenatal health care is important to seek as soon as pregnancy is suspected. Prevention or detection of possible problems early on is important in enhancing the healthy development of the fetus. Regular prenatal checkups are crucial for prospective mothers. During prenatal visits, prospective mothers are advised about good nutrition, the importance of taking vitamin supplements, and are examined for possible concerns. It is important that prospective mothers engage in good nutrition and maintain regular exercise and tend to their emotional well-being. The mother's age can also have an influence on fetal development. Some teenage mothers may face a higher rate of birth problems due to factors other than age such as lack of prenatal care, and poor nutrition, stress, and health problems correlated with low socio-economic backgrounds. Women who are waiting until their thirties or forties to have children face a greater risk of infertility, miscarriage, and babies born with chromosomal abnormalities.

Rh factor incompatibility can also be a cause of serious problems for a mother's second baby and subsequent babies. When the mother's Rh factor is negative and the father's Rh factor is positive, the baby may inherit the father's Rh factor. Due to the Rh factor incompatibility, the mother forms antibodies against the fetus and reacts to the baby's blood as if there were a foreign substance present and "attacks" the baby's blood. This "attack" destroys the baby's red blood cells affecting the baby's ability to carry oxygen in his/her blood which can result in the death of the fetus. Typically this does not happen with the first baby due to the length of time it takes for antibodies to form. However, with subsequent pregnancies, the mother's antibodies can attack the blood cells of the fetus by way of the placenta. Rh factor or Rh incompatibility can cause congenital anomalies (e.g. hearing loss and/or stillbirth). There are currently two types of treatment for Rh incompatibility. They are the use of the serum, RhoGam for the mother and blood transfusions of the fetus in the uterus if necessary.

Child abuse/Neglect

According to Beck (1999), child abuse can occur in the following ways:

  • Physical abuse - abuse that results in pain, cuts, welts, bruises, burns, broken bones, and other physical injuries
  • Sexual abuse - exposure to sexual comments, fondling, intercourse, and other types of exploitation
  • Physical neglect - conditions where children's basic needs of food, clothing, shelter, or supervision are not met.
  • Psychological abuse - actions that humiliate or terrorize children that results in damaging their emotional, social, or cognitive functioning. (p. 399).

Child abuse can result in diminished self-esteem, social skills and self-regulatory behaviors. According to Cicchetti and Toth (1998), maltreated children show difficulties in peer interaction and encounter learning problems, in addition to exhibiting severe depression and delinquency. Overall, child abuse can impede social/emotional well-being, attachment/bonding, cognitive/psychological development, and adaptive skills.


Genetic disorders inhibit child development. Some of the disorders can be detected prior to birth through amniocentesis (obtaining a sampling of amniotic fluid) and chronic villus biopsy (obtaining a sampling of the outer membrane tissue of the amniotic sac). Some genetic disorders can be identified in newborns with laboratory blood samples. Some developmental problems can be traced to genes and chromosomes, such as Down syndrome, spina bifida, vision impairment, hearing loss, cystic fibrosis, Tay-Sachs disease, and Fragile X syndrome. Some of these hereditary problems can lead to mental retardation, chronic health problems, or physical malformations. Certain heredity factors greatly affect early physical, motor, speech/language, sensory perception, and cognitive development.


Poor nutrition can affect fetal development as well as child development. Prenatally, the fetus depends totally on the mother to receive nutrition through the placenta. If a mother is malnourished it is likely the baby will be born malnourished, or worse, be born prematurely, suffer from low birth weight, or die soon after birth (Susser & Stein, 1994). Upon birth, malnourished infants' immune system development is suppressed resulting in frequent respiratory illnesses (Chandra, 1991). Many are irritable and unresponsive to stimulation around them.

Effect of Birth Complications/Trauma

Numerous things can go wrong during the labor and delivery. Trauma can be due to oxygen deprivation, preterm birth (prematurity), low-birth weight, and post-term birth.

Oxygen Deprivation

Oxygen deprivation, or anoxia, prior to or during the birth process can be a result of premature separation of the placenta or the cord being wrapped around the babies' neck causing inadequate oxygen supply. Deprivation of oxygen can result in a child having cerebral palsy - a term used for a variety of problems resulting from brain damage before, during, or just after birth. Newborns sometimes fail to start breathing immediately after being born. Risk of brain damage can result from delayed breathing of more than 3 minutes at birth. The effect of oxygen deprivation generally causes physical disabilities that tend to be permanent, as well as blindness, hearing impairments, intellectual and motor delays throughout early life. If oxygen deprivation were severe, problems will persist beyond early childhood.

Low Birth Weight

Birth weight is a good predictor of infant survival and healthy development. For a full term pregnancy (40 weeks), a healthy average weight is considered to be between 5 pounds 11 ½ ounces and 8 pounds 5 ¾ ounces. Infants may have low birth weight because of prematurity and/or intrauterine growth retardation due to genetic makeup or an unfavorable uterine environment. Low birth weight infants face health complications: immature lungs and breathing, mild/severe cognition problems, cerebral palsy, delayed speech, and sensory impairments (visual and auditory). Infants weighing less than 2 ½ pounds at birth experience more extreme long-term difficulties that are sometimes not overcome. Infants weighing less than 2 ½ pounds need intensive neonatal care for survival and typically require lengthy stays in the hospital.

Preterm Birth (Prematurity)

Preterm infants are born several weeks before completing 37 weeks of gestation, regardless of birth weight. Approximately 10% of women deliver prior to 38 weeks' gestation with 2% delivering prior to 32 weeks. Various factors are associated with premature birth: teen pregnancies, poor prenatal care, drug abuse, and maternal trauma. Preterm infants commonly have respiratory problems due to underdeveloped lungs. Brain hemorrhaging is also a complication of preterm birth along with immature immune systems. Deficits in motor coordination, inattentiveness, overactiveness, and frequent illnesses are some of the difficulties that continue on into the primary years (McCormick, Gortmaker, & Sobol, 1990). Preterm babies are sometimes irritable, unresponsive, and suck poorly. Because of these problems, some parents become less sensitive and responsive in caring for them. Preterm babies are less often cuddled, touched, and talked to, especially those who are very ill at birth. According to Patteson and Barnard (1990), in an effort to receive a response from a baby who is passive, mothers will be overly intrusive via interfering pokes and verbal commands.

Post-Term Birth

Post-term babies are infants that are born after 42 weeks. Approximately 5% of women deliver after 42 weeks. One concern of post-term babies is due to the placenta no longer functioning properly or the sharp drop in the amount of amniotic fluid. With the decrease of amniotic fluid, the infant's movements in the uterus will squeeze the umbilical cord. In addition, the fetus has grown larger during the extra weeks in the uterus which may cause the baby to experience difficulty moving through the birth canal. Increased risk for oxygen deprivation and head injuries occur in post-term births.

Parental/Caregiver Influence and Interaction

According to Trawick-Smith (2003), "families of different cultures adopt unique methods for playing with, carrying, feeding, comforting, educating, and socializing their children" (p. 449). Interactions between children and their parents and/or caregivers differ across cultures. Some cultures respond to consoling infants by feeding them or quickly attending to their needs whereas other cultures believe in not responding so quickly, socializing them to become more independent at an early age. Interactions between parent and child are largely influenced by cultural beliefs, values and personal experiences of one's own family and family beliefs. According to Sanchez (1997), low-income Mexican American parents favor dependence and attachment in their child rearing stressing reliance on family and friends. Levine (1996) concludes that parents in poor communities generally emphasize self-sufficiency helping their children become independent at an early age as evidence in early weaning, walking, and toilet training.

Additionally, Trawick-Smith (2003), states that "due to difference in child-rearing beliefs, parents adopt different ways of interacting with their children. Interactions vary across cultural groups in four major ways: communication, responses to crying, teaching, and carrying and holding" (p. 455). See table below for summary.

Parental Interactions Universals Variations
Communicating All parents communicate in some way with their children. Parents of some cultures use much verbal communication with their children. Others more often communicate through gestures, facial expressions, and physical touch.
Responses to crying All parents respond in some way to children's crying. Parents of some cultural groups show distress when their children cry and respond quickly. Others are less concerned by cries and take longer to react. Some use cuddling and feeding as a response; others use a pacifier or physical stimulation.
Teaching All parents are concerned about the education of their children. Parents of some cultures believe that teaching is an important part of the parental role. In other cultures, parents believe teachers in school should assume this responsibility.
Carrying and holding All parents hold and carry their young children. Some children are bound in slings or cradleboards for much of the day. Others are held in a parent's or grandparent's arms. Some children are held infrequently and move about freely in the home or neighborhood.


Some of the more prevalent developmental disabilities and disorders with children birth to three are listed below under specific categories. This is by no means an all inclusive list of developmental disabilities and disorders that may be seen in a child birth to three years of age but should be used as a guide for various disorders prevalent today.

Prevalent Developmental Disabilities and Disorders

  • Chromosomal Abnormalities
    • Down syndrome
    • Fragile X syndrome
  • Neuromotor Impairments
    • Traumatic brain injury
    • Cerebral palsy
    • Seizure disorders
    • Spina bifida
  • Degenerative Diseases
    • Muscular dystrophy
  • Orthopedic and Musculosketal Disorders
    • Scoliosis
    • Juvenile Rheumatoid arthritis
  • Sensory Impairments
    • Visual impairments
    • Hearing Impairments
  • Major health impairments
    • Congenital heart defects
    • Sickle cell disease
    • Asthma
    • Cystic fibrosis
  • Infectious diseases
    • AIDS/HIV
    • Meningitis
    • Encephalitis
    • Hepatitis B
  • Fetal Alcohol Syndrome
  • Autism

Causes of Prevalent Developmental Disabilities and Disorders

Below are brief summaries of some of the known causes of prevalent developmental disabilities and disorders. As with many disorders, some causes are still unknown.

Chromosomal Abnormalities

Down syndrome, sometimes called trisomy 21, is one example of a condition caused by chromosomal abnormalities. Children with Down syndrome receive three number 21 chromosomes instead of two. In addition to other concerns, children with Down syndrome are at high risk for vision and/or hearing impairments that will further affect their development. Down syndrome occurs in about 1 in 600 to 800 live births. Incidence of Down syndrome increases with the age of the mother, 1 incidence per 100 live births for women 40 years of age or older.

Fragile X Syndrome is another example of a condition caused by chromosomal abnormalities. Fragile X results from a brittle or separated X chromosome. The incidence of Fragile X Syndrome is 1 in 1,500 males and 1 in 2,500 females.

Neuromotor Impairments

Neuromotor impairments are a result of inadequate functioning of nerve cells or neurons which transmit information from the brain to other parts of the body. When there is some sort of injury, dysfunction, or disease in one or more of the elements of the nervous system, some neuromotor impairments can occur such as traumatic brain injuries, cerebral palsy, seizure disorders, and spina bifida.

Traumatic brain injuries (TBI) can affect a child's physical, cognitive, language, and/or emotional development. Traumatic brain injuries can be a result of child abuse such as Shaken Baby Syndrome and also occur accidentally. According to Bagamato and Feldman (1989) one of the most frequent causes of TBI is accidental falls. Car accidents and outdoor accidents (playing) are also common causes of TBI.

Cerebral palsy is a disorder of muscle control or coordination resulting from malfunctioning of or damage to the brain prior to, during, or within the first years of life (Blackmon, 1990). Cerebral palsy affects a child's motoric abilities, communication, cognition, and adaptive behavior skills. There are a number of causes associated with cerebral palsy prior to birth (prenatal), during birth (perinatal) or after birth (postnatally). Prenatal causes include infections such as rubella and toxoplasmosis, genetic diseases such as microcephaly, and risk factors such as placental insufficiency and toxemia of pregnancy. Perinatal causes of cerebral palsy include lack of oxygen supply during the birth process, and high concentrations of bilirubin in the blood. Postnatal causes of cerebral palsy have been identified such as meningitis and encephalitis, strokes, or anoxia (lack of oxygen) possibly due to near-drowning for example (Nelson & Ellenberg, 1986). All of these causes result in the child with cerebral palsy also being at high risk for vision and/or hearing impairments. The incidence of cerebral palsy is most often reported as 1.5 to 2 per 1,000 live births. The incidence of cerebral palsy is said to be higher among infants with low birth weight.

Common neuromotor disorders also include seizure disorders. The term epilepsy is generally used to describe chronic seizure disorders. Depending on the type of seizures, characteristics of seizures can be described as an involuntary disruption in the central nervous system that comes on suddenly and can sometimes cause an altered state of consciousness, motor activity, sensory phenomena, or inappropriate behavior that lasts a limited, but varied amount of time (Berkow, 1992; Holmes, 1992). Seizures can be caused by various means: drug overdose, infections, high temperature, and chemical imbalances. Seizures that occur over a long-term are considered to be a disorder. Seizures can occur for unknown reasons, called idiopathic which can result from a brain insult or more metabolic abnormalities (Berkow). Seizures that have an underlying cause, called symptomatic usually involves brain abnormalities, such as tumors, aneurysms, or abnormalities in the blood system or brain structure which may occur during fetal development or even later. In many occasions, seizures occur more frequently in individuals who have disabilities such as cerebral palsy, TBI, and mental retardation. Seizure disorders occur in 0.5 percent of the general population.

Spina bifida is a spinal cord defect that often results in paralysis and sensory loss and is one of the most serious neurodevelopmental disorders. Spina bifida occurs when the vertebral column has a defective closure. Several environmental causes have been suggested as possible causes of spina bifida: lack of folic acid and other vitamins and maternal illnesses and medication use (Morbidity and Mortality Weekly Report, 1992; Sandford, Kissling, & Joubert, 1992; Rosa, 1991). The incidence of spina bifida is about 1 in ever 1,000 live births making it one of the most common developmental defects of the nervous system. Introduction of folic acid can reduce the incidence of spina bifida by 50%.

Causes of Prevalent Developmental Disabilities and Disorders (continued)

Degenerative Diseases

Muscular dystrophy is a disease that is genetically based and characterized by progressive muscle and skeletal weakness and degeneration (Sher, 1990). Some forms of muscular dystrophy are sex-linked (defective gene carried by mothers and passed on to sons) or autosomal-dominantly linked (defective gene carried by mother or father transmitted to son or daughter) or autosomal-recessively linked (defective gene carried by both the mother and father and transmitted to son or daughter) (Heller, Alberto, Forney, & Schwartzman, 1996). The most common as well as most severe of the muscular dystrophies is Duchenne Muscular Dystrophy (DMD) which manifests prior to age 6. Incidence of DMD is about 1 per 5,000 male live births.

Orthopedic and Musculosketal Disorders

Scoliosis is a sideways curvature of the spine. Scoliosis can either be nonstructural or structural curvatures. Nonstructural curvatures are generally due to secondary causes that are not permanent such as children who have legs that are different lengths or who have a herniated disk, both of which when corrected will correct the curvature of the spine. Structural curvatures of the spine are permanent. Causes range from unknown to genetic. Congenital causes are present at birth and tend to result in vertebrae that are malformed. Other causes of scoliosis result from central nervous system and muscular diseases such as cerebral palsy and muscular dystrophy. Additional causes may include trauma, malnutrition, bone diseases, and tumors.

Juvenile rheumatoid arthritis is joint inflammation that is chronic in which onset is prior to age 16. Specific causes of juvenile rheumatoid arthritis are unknown, however several causes have been proposed. One thought is that the body's antibodies attack normal cells and cause an autoimmune response. Another hypothesis is the presence of a microorganism infection causing inflammation in the joints. It is also thought that individuals with juvenile rheumatoid arthritis are genetically predisposed to the disease (Scholz & Albert, 1993)

Sensory Impairments

Children experience the world primarily through their vision and hearing. Deficits in either or both of these senses result in a barrier to effectively experiencing the world. When these barriers are addressed through early intervention appropriately (e.g., amplification, sign language, guided experiences, lenses) it is possible for the child with a hearing or vision impairment who has no other disability to develop at a rate similar to typically developing peers.

Visual Impairments Causes
Keratoconus diseases and disorders of the cornea  
Glaucoma abnormal increase in intraocular pressure
Color blindness chromosomal abnormalities
Strabismus eye muscle movement impairment results in incorrect eye alignment
Nearsightedness lens/cornea curvature deficits
Cataracts congenital infections or syndromes
Detached retinas trauma
Cortical blindness closed head injuries, drowning, or meningitis all resulting in brain damage

Hearing impairment is any loss of hearing that affects a child's ability to access communication in their environment. Even mild and unilateral hearing loss will decrease a child's access to incidental language and communication opportunities. Severity of hearing loss is reported in decibel (dB) levels that refer to the loudness of a sound required for an individual to detect sounds of different frequencies (pitches). Mild hearing loss refers to a person who must have sound at least 26-40 dB loud before he or she can perceive that sound is present. A moderate degree of hearing loss occurs in a range of 41-55 dB, moderate-severe is 56-70 dB, severe is 71-90 dB, and profoundly deaf is defined as an inability to perceive sound, even when it is louder than 90 dB across the pitch range.

Hearing impairment is caused when physiological structures are damaged, deformed, or blocked. An ear canal plugged with ear wax or fluid or infection behind the eardrum will prevent a barrier to sound as it is conducted from the outer ear, to the inner ear. Thus, problems in the outer or middle ear cause conductive hearing losses. The cochlea within the inner ear is considered to be the sensory organ of hearing. When the hair cells that activate to the presence of sound in the inner ear are missing, damaged or deformed, the electrical signal that represents the sound cannot be transferred to the brain. Hearing loss due to problems with the hair cells in the inner ear is called a sensorineural hearing loss. Individuals can have problems in the hair cells of the cochlea and also have ear infections. Therefore, both sensorineural hearing loss and conductive hearing loss are present. In this situation the person will be said to have a mixed hearing loss. Hearing loss can also be progressive, requiring children with identified sensorineural hearing loss to have their hearing ability monitored every 3-6 months until school age. Finally, if the electrical signals generated in the cochlea to represent sound are not able to be processed, or cannot be processed effectively in the auditory cortex of the brain this is considered to be a central hearing loss, and more recently is called auditory dyssynchrony.

The incidence of permanent hearing loss in infants is 3/1000. Ear infections causing fluctuating conductive hearing loss are very common in infants and toddlers resulting in approximately 90% of children under the age of 3 having had at least one episode of ear infection, or otitis media.

Hearing Impairment Causes
Disorders of the outer ear (Conductive loss) Absence or closure of external ear canal Genetic inner ear abnormality Impacted ear canal (ear wax) Tumors Foreign bodies Swimmer's ear (infection of the skin of the external ear canal)
Disorders of the middle ear (Conductive loss) Bacterial/viral infection Obstructed Eustachian tube Middle ear infection (otitis media) Head trauma
Disorders of the inner ear and auditory nerve (Sensorineural loss) Congenital infections (Usher's syndrome) Trauma Loud noises Meningitis Damage to cochlea or auditory nerve
Disorders of the outer, middle, and inner ear (Mixed hearing loss) (All of the above causes can be considered for a mixed hearing loss)
Disorders of the central auditory system (Central hearing loss) Auditory dyssynchrony Brain tumors Acquired brain damage Vascular changes in the brain

Major Health Impairments

Congenital heart defects refer to defects in the structure of the heart or heart blood vessels (e.g., defective heart valve, hole in heart chamber). Congenital heart defects occur during the development of the fetus. Typically the cause of the heart defect is unknown but can be genetic in nature. Children with Down syndrome or Turner syndrome sometimes have congenital heart defects. Other causes of congenital heart defects are associated with maternal infections, medications (i.e. anticonvulsant agents, or maternal diseases such as diabetes). Approximately 8 out of 1,000 individuals have heart defects.

Sickle cell anemia or disease is a genetic disorder where some red blood cells are shaped like sickles (instead of disk-shaped) and have a shortened life span resulting in anemia. The sickle cell trait is inherited from one parent; sickle cell anemia is transmitted from both parents. Sickle cell anemia is the result of abnormal hemoglobin (hemoglobin S).

Cystic fibrosis is a disorder that produces abnormal mucus which causes progressive lung damage and affects the absorption of fat and protein in the body (Blackman, 1990). Cystic fibrosis is the most common inherited chronic disease among white children, 1 in every 2,000 live births. In blacks, cystic fibrosis occurs in about 1 in every 20,000 live births and in Asians, 1 in every 100,000 live births.

Infectious diseases

Acquired immune deficiency syndrome (AIDS) refers to a damaged immune system that functions ineffectively and is a result of the human immunodeficiency virus (HIV). Most children under the age of 3 will get AIDS from the mother who has HIV either transmitted during pregnancy, at the time of birth, or from breast feeding. Children can also contract AIDS through contaminated blood in transfusions or child abuse that is sexual in nature (Caldwell & Rogers, 1991).

Meningitis is an infection of the meninges (covering) that surrounds the brain and spinal cord (Blackman, 1990). Meningitis can be caused by a bacterial (seriously threatening) or viral (less threatening) infection. Newborn children can acquire meningitis during the birth process coming in contact with organisms from the mother's intestinal tract and/or vagina. For children two months to three years of age, meningitis can be caused by one of three organisms: meningucoccus, pneumococcus, or haemophilus influenzae. The incidence of meningitis in full term infants is 0.13 per 1,000 live births, increasing to 2.24 for preterm infants. Meningitis is the second highest cause of hearing loss in young children.

Encephalitis occurs when the brain is inflamed and is generally caused by a virus or infection such as measles or mumps. Such viruses can be spread from person to person or from mosquitoes or ticks and or rabies. Incidence of encephalitis is hard to determine due to diagnostic difficulties that lead to incidences being unreported.

Hepatitis B is an inflammation of the liver and is caused by the Hepatitis B virus. Even though there are several types of hepatitis, Hepatitis B is the most prevalent in children with disabilities. Children who have hemophilia, are in accidents or who undergo surgical procedures and require blood are at high risk. According to Bauer and Shea (1986), special education teachers are at high risk of contracting Hepatitis B

Cytomegalovirus (CMV) is a member of the herpes virus family and usually causes no problems for healthy individuals. However, about 7 to 10% of unborn children of women who get CMV for the first time or have a reactivation of infection during pregnancy will have symptoms at birth or will develop disabilities including hearing loss, mental retardation, small head size, and delays in development. Infants can be infected with CMV during or soon after delivery. Infection can occur as the infant progresses through the birth canal of an infected mother, consumes breast milk from a mother who has the virus, or receives a blood transfusion contaminated with CMV.

Fetal Alcohol Syndrome (FAS)

A spectrum of developmental and physical effects on the fetus has been associated with maternal ingestion of alcohol during pregnancy. Fetal Alcohol Syndrome (FAS) incidence rates for FAS range from 3 to 6 cases per 1,000 live births. FAS is one of the most prevalent known causes of mental retardation and the most preventable.


Autism is a pervasive developmental disorder characterized by impairments in at least one of the following areas: social relatedness, communication, and play skills with onset prior to age three. Autism is more prevalent in males. There is no known unique cause of autism. Autism is thought to be caused by brain dysfunction during gestation although most children with autism do not have a brain injury detectable by medical assessments. There are some medical indications that heredity can be a factor in autism. Also, exposure to viruses such as rubella and cytolomegalo virus, infections such as meningitis, and exposure to toxins and pollutants have also been thought to cause autism. The identification of children with autism has drastically increased over the past few years.

Characteristics of Prevalent Developmental Disabilities and Disorders

Disability/Disorder Characteristics
Down Syndrome Congenital heart defect Hypotonia Slanted eyes Protruding tongue Extra fold at inner corners of eyes Short broad hands with single palmar crease Small stature Hearing Impairment Vision Impairment Cognitive delays Language delays
Fragile X Syndrome Large head Prominent ears Prominent forehead Cognitive delays Language delays
Traumatic brain injury Dizziness Headaches Irritability Fatigue Memory deficits Blurred vision Similar to cerebral palsy characteristics
Cerebral palsy Increased muscle tone Spasticity Low muscle tone (hypotonia) Uncoordinated muscle movement Wide gait walking Cognitive deficits (40% of hemiplegia) Slurred speech Hearing, speech, and language impairments (30%) Seizure disorder (50%)
Seizure disorders Loss of consciousness Irregular breathing Drooling Staring Involuntary repetitive jerking Spasms Repetitive blinking or licking of lips
Spina bifida Malformation of spinal column Paralysis Sensory loss below area of damage Bowel/bladder problems Hydrocephalus Malformation of the Arnold Chiari
Muscular dystrophy Muscle weakness Difficulty in walking Thin lips, inverted-V-shaped upper lip Facial weakness Abnormal gait (hip-waddling) Enlarged calves
Scoliosis Extreme back pain Inability to sit straight Distorted rib cage Poor posture
Juvenile Rheumatoid arthritis Stiffness Joint pain when moving Joint movement limitations Fever
Visual impairments Reduced visual acuity Problems to optic nerve Loss of central vision Cortical visual impairment Fluctuating vision Loss of color vision Roving eye movements Seeing bright flashes of light or floaters Blurred vision Night blindness Progressive loss of peripheral vision Severe pain, redness Sensitivity to light Clouding of the lens of the eye Eye enlargement, twitching of eye muscles Frequent changes of glasses/contacts
Hearing Impairments Lack of expected response to sound Lack of turning toward sounds Turns one ear toward sound Delayed speech and language development Progressive loss of hearing Hearing loss secondary to fever up to 105° Hearing loss secondary to ear infection Abrupt hearing loss Ringing in the ears Dizziness
Congenital heart defects Breathing irregularities Fatigue Heart murmurs Heartbeat irregularities Growth abnormalities Clubbed fingers and/or toes
Sickle cell anemia/disease Appear pale Fatigue Weakness Enlarged heart Jaundiced Severe pain/swelling in hands and feet Pain Prominent forehead, high cheekbones, long thick legs and arms (Bleck & Nagel, 1982)
Cystic fibrosis Abnormal amounts of mucus Abnormal protein secretions Coughing Poor digestion Obstructed airways High salt content in sweat
AIDS/HIV Fatigue Recurrent pneumonia Ear infections Failure to thrive Weight loss Chronic diarrhea Dry cough Thrush Tendency to bruise easily Chronic infections
Meningitis Bulging soft spot in infants Fever Stiff neck Poor feeding Seizures Headaches Vomiting Irritability
Encephalitis Headaches Fever Altered consciousness Seizures Partial paralysis Coma
Hepatitis B Jaundice Decreased appetite Fatigue Nausea
Cytomegalovirus (CMV) Hearing loss Mental retardation Small head size Fever and sore throat Swollen glands
Fetal Alcohol Syndrome Prenatal/postnatal growth retardation Craniofacial malformations Abnormal sleep patterns Low birth weights (80%) Severe feeding problems (70%) Ventricular septal defect Hypotonia Fine-motor incoordination and clumsiness Visual complications Physical features: widely spaced eyes with short eye slits, short, upturned noses, thin upper lips, & microcephaly
Autism Language development delay Lack of socialization Poor eye contact Irritability and/or stiffening when held Arching back away from caretaker to avoid physical contact as an infant Limp when picked up as an infant (failure to anticipate being picked up) Self-injurious behaviors Perseverative behavior Lack of facial expressiveness in infancy


Signals of Possible Developmental Delays

As Infant Toddler Developmental Specialists (ITDS), it is important to be vigilantly observant of developmental milestones and to express or show concern when significant differences in reaching developmental milestones are observed. Allen and Marotz (1999) identify the following developmental alerts at significant ages when a health care provider or early childhood specialist should be consulted.

  • If by the end of 1 month of age the infant does not:
    • Startle to loud noises
    • Suck or swallow easily
    • Make eye contact with caregiver
    • Cease crying when held
  • If by the end of 4 months of age the infant does not:
    • Socially smile
    • Track moving objects
    • Turn head toward sounds heard
    • Reach out
    • Raise head while on stomach
  • If by the end of 8 months of age the infant does not:
    • Explore hands
    • Look for hidden objects
    • Pick up objects using pincer grip
    • Sit unaided
    • Appear interested in new or unusual sounds
  • If by the end of 12 months of age the infant does not:
    • Independently pull to a standing position
    • Crawl
    • Repeat simple sounds
    • Have an interest in looking at pictures
    • Respond "yes" or "no" to simple questions
    • Show understanding of new words
    • Attempt to feed self
  • If by the end of 24 months the child does not:
    • Identify familiar objects
    • Enjoy listening to someone read to them
    • Walk with little tumbles or falls
  • If by the end of 36 months the child does not
    • Begin the process of toilet training
    • Show signs of empathy and caring
    • Generally undress themselves
    • Speak with 75% intelligibility

Difficulty Identifying Possible Developmental Delays

It is not always easy to identify a possible developmental disorder or delay. Some problems are easily identified, particularly if the problem is evident as a physical characteristic (e.g. Down syndrome). Many other developmental delays are not as obvious or easily recognized. The signs of a possible delay may not be obvious making it hard to determine if the child is actually exhibiting a developmental delay. According to Allen and Marotz (1999), difficulty in identifying possible delays, entail the following:

  • Certain areas may appear to be delayed yet the child continues to develop typically in other areas
  • Variations in children's achievements exist as well as uneven maturation and constantly changing conditions in the child's environment.
  • Parenting patterns differ significantly across cultures as well as perception of developmental milestones.
  • Delays may not be immediately noticed (e.g., vision/hearing loss).
  • Health problems that can affect children's performance are sometimes intermittent (e.g., ear infections)

At any time the parent or caregiver feels or perceives a child is experiencing a developmental problem, help should be sought. It is possible that the child would benefit from a developmental screening to determine potential delays or problems. Sometimes just consulting and discussing concerns with an ITDS can ease the parents or caregivers mind or validate the need for some type of early intervention.

Effect of Sensory Impairments on Child Development

  • Deficits in identifying the source of a sound
  • Difficulty in listening in a noisy environment
  • Language delays
  • Speech delays
  • Lack of coordination
  • Decreased muscle tone leading to delays in gross motor skills
  • Delayed fine motor skills
  • Delays in self-feeding
  • Delayed social interaction and development of play

Effect of Chronic Illness on Child Development

  • Delayed growth
  • Lack of stamina
  • Loss of strength
  • Malnutrition
  • Respiratory problems
  • Socialization concerns
  • Diminished immune system

Effect of Genetic Syndromes on Child Development

  • Language delays
  • Maturation delays
  • Cognitive deficiencies
  • Infertility

Effect of Cognitive Delays on Child Development

  • Decreased learning abilities
  • Problems in working memory
  • Distractibility
  • Poor judgment
  • Deficiencies in processing information
  • Inflexibility
  • Inability of brain to control muscle function

Effect of Motor Deficits on Child Development

  • Difficulty in muscle control and coordination
  • Lack of bladder and bowel control
  • Loss of sense of balance
  • Digression of motor skills
  • Loss of equilibrium
  • Disordered interpretation of tactile stimulation (tactile defensiveness)

(Batshaw, 1997; Heller, Alberto, Forney, & Schwartzman, 1996)

Effect of Developmental Disabilities and Disorders on the Family

This module has generally focused on the effect of developmental disabilities and disorders on child development. Equally important is the effect developmental disabilities and disorders have on the family structure. How the family copes with the daily stress and needs of its family members can influence the outcome of the child (Miller, 1994; Saddler, Hillman, & Benjamins, 1993; Snowdown, Cameron, & Dunham, 1994). Positive, negative, and neutral effects generally depend on the nature of the family. According to Turnbull and Turnbull (1997), successful families have a reasonable balance of affection, financial independence, care, recreation, and education and consistently show the value of caring, affection, and unconditional love while raising children. It is important for the Infant Toddler Developmental Specialist (ITDS) to recognize the family's strengths and empower the family to meet the needs of the child and family. Being respectful of cultural differences and religious beliefs is also equally important. One of the first situations that a family encounters is when the family first learns that their child has a developmental delay, disorder, or disability. Coping with this news introduces a whole new dimension to the family structure. Not only is the family faced with the situation of readjusting expectations, there are other factors now present: family members' and friends' needs and social isolation issues, time and physical demands, and financial, transportation, and medical issues.

Family issues

Needs of family members often go unnoticed or unfulfilled due to the heavy demand of meeting basic needs of the child with the disability in the household. Providing quality time for all family members, even though important, is sometimes impossible. Family members may also experience bouts of depression. Families can be under tremendous stress as well as the physical strain they encounter in making appointments and providing quality child care. Depression can also be a result of strain between spouses over disagreements over child care or treatment options and/or the overall responsibility of caring for a child with special needs.

As the parents react and respond to the news their child has a developmental delay, disorder, or disability, extended family members and/or friends may be experiencing issues. Grandparents may not understand the "diagnosis" or may even place blame on one of the parents. Friends of the family may feel awkward or uncomfortable in the presence of the child or lack words for consolation and thereby stay away. Babysitters may also be hard to find possibly due to the need for a more skilled professional sitter. All of these situations can lead to isolation for the family. Even if family members want to maintain their social life, time and specialized needs of the child may prohibit that from happening.

It is quite understandable how the needs of siblings may become overlooked; especially at the onset of discovering a child has a special need. It is important to note that overall, children have mixed feelings about their siblings with disabilities (Knott, Lewis, & Williams, 1995). Some children may feel guilty that they are able-bodied and their sibling isn't, some may worry that they may contract the disability, and others may feel less loved or cared for due to the time and care required for the child with the disability. It is important that the parents understand the importance of balancing their efforts so as not to overlook the needs of the unaffected siblings. Many siblings experience positive rewards from living with a brother or sister with a disability and become more nurturing, understanding, and caring individuals.

Time/physical demands

The demands placed on a family of a child with special needs can be overwhelming. The physical demands as well as time demands placed on families can exhaust a family's well-being. Physical demands may entail lifting and positioning a child with motor deficits and/or providing daily living skills, just to name a few situations. The necessity of scheduling therapies, medical interventions and services can place time restraints on the family structure. The physical and time demands can interfere with parents' jobs which can lead to added stress on the family system. Finding appropriate and quality child care can also be taxing on the family and may result in one caregiver staying home to provide the necessary child care.

Financial issues

Financial issues can have a tremendous effect on families. Sometimes, just life-saving medical intervention can exhaust a family's finances. Medical services as well as transportation and home renovation needs may also have an effect on a family's financial resources not to mention the issues already addressed above. Much medical technology assistance can be very expensive, depending on the type of equipment needed and the severity of the disability. Therefore, financial issues need to be addressed. As an ITDS, you might be the resource person the family turns to for advice on financing and securing technological assistance. Resources for the family to assist in providing such technology may be crucial for the child's well-being and life.

Transportation is another concern for families of children with disabilities. Many times alternative or modified transportation is needed (i.e. wheelchair modified vans). As an ITDS, it is important to have knowledge about available resources for the parents/caregivers that may need information concerning public transportation alternatives and transportation modifications. Due to transportation concerns, it may also be necessary to adjust therapy schedules and medical services accordingly to accommodate the transportation needs of the family/caregiver.

Home renovation is a need for some families to accommodate wheelchairs, bathing/toileting needs, etc. Such renovations can be extremely expensive and may overwhelm families.

Effect of Multiple Disabilities on Child Development

Many times children exhibit multiple disabilities (i.e. mental retardation/vision impairment/congenital heart defect). Children with multiple disabilities have unique needs due to the combined effect of several impairments that present unique challenges. The combination of the characteristics of the multiple impairments causes each individual child to have a unique response to different situations. Different influences, both environmental and psychological, will cause an individual child to react and respond differently to a specific situation. Differences due to personal stamina, cognitive abilities, and self-esteem can create different outcomes for children with the same multiple disabilities (Heller, Alberto, Forney, & Schwartzman, 1996). Therefore, it is important for the ITDS to take into account each child's specific needs when considering and planning interventions. It is important that an atmosphere which is positive and nurturing be created where independence and success is promoted.

Adaptations effect on child development

Due to advanced medical technology and technology in general, children with developmental disabilities need to have access to adaptations that can enhance daily functioning and living. Some children will be dependent on the assistive devices for all their life; some will be dependent just temporarily. The good news is that these assistive devices are available for young children and can improve their growth and development and increase their independence.

Nutritional assistive devices

Knowing how important good nutrition is for proper growth and health of a child, it is crucial for children with chronic illnesses and developmental disorders to have access to good nutrition. Several nutritional assistive devices are available for providing proper nutrition to children who have feeding problems such as feeding tubes (temporary, permanent or long-term). Temporary feeding tubes (nasogastric tube or NG tube) can be inserted into one nostril and passed into the stomach or intestine. Permanent or long-term feeding tubes can be inserted directly into the stomach (gastrostomy tube) or intestine (oral gastic (OG) tube or a nasojejunal (NJ) tube. Once the feeding tubes are in place, nutritional formulas and or blenderized foods can be consumed by the child. (Levy & O'Rourke, 1997).

Surveillance devices

Surveillance devices provide early warnings of potential problems for children who have heart or lung disorders. Two common types of surveillance devices are oximeters (measures oxygen saturation) and cardiorespiratory monitors (records heart and respiratory rate) (Poets & Southall, 1994; Silvestri, Weese-Mayer, & Kenny, 1994). Both of these devices can be used in the home environment and offer some sense of security by providing an early warning system of equipment malfunctions or breathing/respiratory emergencies.

Respiratory technology assistance

For children with chronic respiratory failure, normal oxygen levels in the blood are necessary to promote growth and development and prevent lung injury. Respiratory technology assistance is necessary for children who cannot maintain adequate gas exchange (intake of oxygen, output of carbon dioxide). The respiratory pump provides the action to adequately exchange the necessary gases (oxygen and carbon dioxide). Tracheostomies are another form of providing respiratory assistance. The tracheostomy tube (inserted in the trachea) provides an open airway passage where a ventilator or similar device provides a mixture of air and oxygen. Due to its direct access, blockages and secretions can be removed and/or suctioned (Duncan, Howell, deLorimier, et al., 1992).

Characteristics of Families of Young Children with Disabilities

What is a family?

In our society today, the makeup of family membership deviates from the more traditional concept of a father, a mother and one or more children. For the purpose of this lesson, we will define family in the broadest terms. It includes traditional families together with blended families; single parent families; families with a single parent and a significant other; extended families (grandparents, aunts and uncles, cousins); families with the grandparent in a parental role; same-sex parent families; and families of adopted and foster children. This definition includes blood relatives as well as caregivers who may or may not be legal guardians.

It is important to understand that with the variations in family makeup, that only those individuals who have legal custody of the child have the legal right to sign documents and receive confidential information from the child's record file. Make sure that you know who this person or these persons are from the very beginning of your relationship with the family.

Early intervention professionals need to be aware of the characteristics of each family and understand the family's support system in order to work collaboratively with them. It is also important to be aware of the characteristics of and stressors on families that may affect their involvement. Family members must also be viewed within the context of the larger family unit. What affects one family member will affect all family members. A family is a complex social system in which no member can be viewed in isolation.

Family Systems Approach

According to the literature, family systems theory refers to an examination of family functioning from the viewpoint that all members of the family impact on each other and affect how the family functions. Family systems theory is often used in early intervention and special education. This "family system approach" to viewing a family requires that professionals understand the important effect all family members have on each other and the child. The family, not just the child, is the unit with which the professional works. Positive changes made in and for the family maximize potential benefits for the child. This approach is supported in the Early Steps service delivery system in its family-centered emphasis, and in the use of ecological assessments which view children in the context of their families and support the family's assessment of their own concerns, priorities and resources as it relates to their child and their needs.

When looking at families from a family systems approach, four areas of family life are examined. These are:

  • Family structure - the structure and makeup of the family - its characteristics and organization. Ask yourself what might affect the family's characteristics and organization.
  • Family interaction - ways family members interact to meet their needs and the role parents play. Think for a minute about the father and the mother. List some factors and questions you might consider that contribute to family interactions.
  • Family functions - activities the family engages in to meet its needs. What functions does each family member perform? List some ideas and questions you might consider that impact family functioning.
  • Family life-cycle - involves changes the family goes through that may alter structure as well as how the family deals with changes in children as they grow and mature? What are some things to think about when you look at the family life-cycle?

Note: When looking at family life, it is very important to view it from the perspective of the family. What does the family see? What is important to the family?

The interaction among and between family members is the process of family relationship building. All these things contribute to the entity we know as "family". The family systems approach defines several interaction sub-systems within families that affect the family's functioning. These include:

  • Marital Interactions - between husband and wife. (These interactions would also be found between a single parent and a significant other with whom the parent shares his/her life).
  • Parent and Child Interactions - parent-child and child-parent.
  • Sibling Interactions - child-child.
  • Extended Family Interactions - extra-familial, friends, community.

Within the Early Steps service delivery system, children are viewed in conjunction with their families and not in isolation. Just as the family systems approach looks at the interrelatedness of family members, families should also be viewed within the context of their relationship to the community. This community includes friends, co-workers, agencies, schools, child care, the medical services, etc. It is the wider system that has an effect on families and can support family functioning in a positive manner. The advantage of using a systems perspective is that we are viewing family members as a whole, mindful of the interactions and relationships occurring within the family as well as looking beyond the immediate family to the outside interactions and supports that affect them.

Family Stress

The stress that may accompany raising a child with disabilities can be greater on those families than in the general population (Hendriks, DeMoor, Oud, & Savelberg, 2001; Smith, Oliver, & Innocenti, 2001). Many variables impact family stress. The age at diagnosis, specific disability and culture are among these variables. Some children are diagnosed at birth, others when they are one or two years old and occasionally, even older. Some disabilities require intense medical intervention and support, others require adaptive equipment and/or accommodations, while still others need intensive behavioral interventions (Lessenberry & Rehfeldt, 2004). Cultural views of disabilities can also add to stress.

Whatever the disability, the impact on the family occurs on a daily basis with differing degrees of intensity. It is important to be aware of the implications, not only of disabilities' affects on development and learning, but also potential limitations in life style and options for these families. For example, consider some of the following questions:

  1. How does having a child who is medically fragile and confined to a wheelchair affect family outings and vacations?
  2. How does having a child with severe emotional disturbance affect the family interactions among all of its members?
  3. How does the stress families experience in raising a child with disabilities affect the child's development and sense of self?
  4. How does having a child with any disability that is covered by insurance affect the degree of mobility parents have to leave current positions and pursue new work with different employers?
  5. What challenges do families who have children with disabilities face when looking for child care?

Hierarchy of Needs

The stress a family is under may have nothing to do with the disability. Whatever its source, stress may get in the way of what a professional hopes to achieve. Many times, the source of the stress must be dealt with before interventions can begin. For instance, if the mother is concerned about her ability to pay her electric bill due to medical expenses, she may not be receptive to the latest technology her service provider brings to her house to try with her son. Even if the provider tells her it will help with her son's ability to communicate, her attention is focused elsewhere.

It is good to think about Maslow's Hierarchy of Needs when we are trying to understand what is important for families when they don't seem to be open to our suggestions. Maslow theorized that human beings have needs for certain things and these needs are hierarchical in nature. In other words, basic needs must be met before we can pay attention to higher order needs. The model he used was a pyramid. At the base are physiological needs (food, water, shelter, warmth), followed by needs for safety (security, stability, freedom from fear), then needs for belonging/love (friends, family, spouse, lover), self-esteem needs (achievement, recognition, mastery, respect) , and finally at the top, needs for self-actualization (pursuing inner ability, fulfillment, creativity).

Families may be stressed because they are focusing on the physiological and safety levels in their lives, while we are suggesting an intervention or service that they can't begin to think about until more pressing needs are dealt with. Families are at different places for a variety of reasons.

What do parents share as their concerns or worries and how is this affected by culture and values? What does understanding Maslow's Hierarchy of Needs tell us about families' competing needs, concerns and priorities?

Extended Family

When looking at families in the Early Steps system, the importance of the extended family can't be overlooked. The extended family may offer the family support in many ways - financially, emotionally and physically. They can provide encouragement, respite, support and representation at meetings. They are often the only individuals with whom the parents feel safe entrusting the care of their children. They include blood relatives as well as close family friends. Today, many grandparents are raising their grandchildren. In many cultures, the extended family plays a vital role in the family ecosystem. If the extended family is important to the family with whom you work, make sure you understand their role in the family system and how to work with them.


Brothers and sisters are also very significant in the lives of children with disabilities and are, in turn, affected by them. The stress the family is under can spill over into their relationships with their parents. If their siblings have severe disabilities or behavior issues, much of their parents' time and energy can be spent on the child with a disability, leaving limited opportunities for the other children. Unless relationships are brought into some type of balance, the siblings of children with disabilities can feel unsupported during crucial times in their own lives. This is a place where extended family members can play an important role. There are many programs and support groups for siblings of children with disabilities. It is noteworthy that many children cite the advantages of growing up with a brother or sister who had a disability. They learn tolerance and compassion at an early age and often provide their sibling with the normalcy of a relationship, taking the lead in involving them in community activities.

How important do you think Billy is in the family dynamics and interactions with Kim?


Although professionals often focus on mothers of children with disabilities, fathers play an important role in the lives of their children. How they interact with their children is often the result of how they were raised as males in the culture in which they grew up. Fathers may have different ways of coping with stress than do mothers. Men tend to internalize their feelings and, if they cannot communicate intense feelings about having a child with special needs to their wives, tensions can occur as they express these feelings in other ways. The friction caused by these differences can add greater stress to the couple's relationship. If the result is a divorce, the issues and stressors facing the single-parent/primary caregiver can be exacerbated when one or more of the children have a disability. At other times, the problems couples face together around their child's disability can strengthen the marriage and improve communication. All these factors are inter-related and can affect your role as an Infant Toddler Developmental Specialist (ITDS) as you are building your relationship with the child and the family.

Cultural Considerations

The increasingly multicultural nature of American society presents a broad range of values and beliefs among families with whom you work, and the entry of new immigrants has increased the number of languages spoken. Often professionals in early intervention settings come from cultures very different than the families with whom they work.

Members of diverse cultures may vary in child-rearing practices, in their views about disabilities, and in their responses to working with professionals. The culture and ethnicity of a family impact the degree and kind of participation the family will engage in with professionals. As the professionals in this relationship, we need to respect the families and their cultures and respond to their needs and values in light of their culture. Kalyanpur and Harry (1999) state, "Awareness of cultural differences provides the scaffolding for building collaborative relationships"(p.118).

Ways of thinking and behaving that enable members of one cultural, ethnic, or linguistic group to work effectively with members of another is called "cultural reciprocity". Lynch and Hanson (1997) use the term "cross cultural competence" (p. 492). Cultural reciprocity and cross cultural competence have several components (Kalyanpur & Harry, 1999; Lynch & Hanson, 1997):

  1. Awareness of one's own cultural limitations
  2. Openness, appreciation, and respect for cultural differences, including subtle differences between cultures
  3. Avoidance of stereotyping
  4. Ability to apply cultural awareness universally to all situations
  5. A view of intercultural interactions as learning opportunities
  6. Ability to use cultural resources in interventions
  7. Empowerment of both families and professionals as each learns from the other
  8. Acknowledgement of the integrity and value of all cultures

In order to work effectively with families of diverse backgrounds, it is also important to know how their specific cultures view disabilities. Some cultures place great value on cooperation, cohesiveness, and interdependence - characteristics that differ from what we generally think of as American culture. If the perspectives of racially/culturally diverse families are not respected, they may become only marginally involved in the collaboration or may not participate at all. For example, Latino parents of a child with mental retardation may view their child's disability differently from Native American parents. The Latino parents may attribute mental retardation to something the mother did during her pregnancy.

The Native American parents, on the other hand, may view the disability of their child as the result of a supernatural cause and employ the use of a tribal healer to intervene (Kalyanpur & Harry, 1999). Both of these cultures view disabilities very differently than a Caucasian middle-class individual whose family roots go back one or two hundred years in America.

How do you reach out to families from different cultures? A study by Sanders and Herting (2000) found that programs that recognize, respect, and address cultural and class differences were effective in engaging diverse families. Given the increasing cultural diversity of our nation, this skill is critical for successful partnerships. Many parents do not speak or read English well enough to communicate with professionals or understand written documents. Because of cultural differences, many parents are not familiar with expectations for them within the Early Steps system. These facts, coupled with how different cultures view and react to disabilities, make the collaborative process more challenging for early intervention personnel.

Another consideration when we are talking about cultures is to think about cultures outside the context of ethnicity. Think about the unique differences between families in rural and urban cultures. Could there be differences in what is valued in each of these cultures? There are also some distinct differences between the military and civilian cultures in the United States. For instance, military families of children with disabilities may not appear to be as strong advocates for their children as their civilian peers when differences of opinion arise with the professional with whom they are working. This may be because of the strong emphasis in the military on the importance of staying within the "chain of command". This may be due to the prevailing sense that to request due process or mediation could negatively affect one's military career.

Family Adjustments

Raising children in a family in which there is a child with a disability adds another dimension to the complexity and challenges of parenting. It is important to recognize that families of children with disabilities may go through a series of feelings and cycles when they learn of their child's disability and as they grow and adjust with their child. It is also important not to attribute problems communicating with and involving these families solely to what is often called the 'cycle of grief' (Kubler-Ross,1969). Kubler-Ross identified several stages individuals experience when dealing with death in what she called the grief cycle. These stages include:

  • initial shock
  • disbelief and denial
  • anger and resentment
  • depression and discouragement
  • bargaining and
  • acceptance.

This stage model has been extensively applied to families of children with disabilities upon learning at birth or later of a disability in their child and as they grow to accept the disability. Caution must be used by professionals when using this model, however, lest attributions of families being "in denial" or "still in the grieving cycle" be used to explain a perceived lack of cooperation and involvement by these families. Many families find this judgment by professionals to be "condescending and patronizing" (Ulrich & Bauer, 2003, p. 20) and a clear barrier to effective communication and partnership. Often they express the need for support and information, not the need to be taken care of (Diamond & Kontos, 2004).

While there is certainly a period of adjustment upon learning of a diagnosis, families tell us their needs and conditions change over time. Their lives are a series of reactions and adaptations - a series of transitions and re-adjustments necessitated by their child's developmental stages, age, severity of disability, and ongoing medical issues (Lin, 2000; Snow, 2001; Turnbull & Turnbull, 2001). It is cyclical rather than sequential. It is important, therefore, for the ITDS and other professionals to view families' adaptations to living with a child with disabilities as a growth process and seek to recognize the strengths these families bring to that process.

Family Partnerships Are Important

As stated in the previous lesson, partnerships with families are not only mandated by law, but they are a positive force in ensuring optimal outcomes for infants and young children with disabilities. Given the emphasis on family participation and collaboration in the Early Steps service delivery system, early intervention professionals need the skills to communicate and work well with not only their peers in the community, but with families as well.

It is important for families and professionals to develop strong interpersonal relationships as a basis for collaboration. A study by Blue-Banning, Summers, Frankland, Nelson, and Beegle (2004) looked at family/professional partnerships for collaboration in early intervention. The authors state that "...forging supportive relationships between parents and professionals appears to be at the heart of a collaborative partnership" (p. 168).The authors examined indicators of professional behavior which facilitated collaboration with families. They identified these six indicators as crucial for collaboration:

  1. Communication
  2. Commitment
  3. Equality
  4. Skills
  5. Trust
  6. Respect

These are similar to what Christenson and Sheridan (2001) have identified as important components of collaboration. Families and professionals each have an important role to play. Their roles do not replace each others but rather compliment and reinforce each other as partners. The key to making collaboration work is the ability to build relationships. By emphasizing the relationship between two individuals, the need to define specific roles lessens. Building a strong relationship between two people and among members of a team maximizes the potential for collaborations to be strong and have a positive impact on the family/professional partnership. (Bruns & Corso, 2001; Christenson & Sheridan, 2001; Klass, 2004; Thorp, 1999).

Can you see the service provider developing a relationship and partnership with the family? Can you identify where any of the six indicators mentioned above in the Blue-Banning et al. material are illustrated in the scenarios?

Communicating with Families

As a review and extension of your learning from Modules 2 and 3, this section will emphasize the critical importance of communication with families in establishing relationships. In order to collaborate, we need to understand each other and articulate our goals. Communication plays a vital role in this. When we use critical communication skills, we convey concern and an attempt to understand the other person. It is a building block of collaborating and trust-building. Some important components of communication for collaboration include the following. (Banks, Santos, & Roof, 2003; Briggs, 1997; Dunst, 2002; Jordan, 2001; Rush, Sheldon, & Hanft, 2003)

  • Accepting the other person and his/her perspectives and differences. Your own frame of reference may interfere with your understanding of someone else's communication message.
  • Listening is the key to a positive conversation - listening effectively to truly hear the message and being able to ask clarifying questions ("how", "what", "tell me about", etc.) in a tone of acceptance that allows a full range of responses. Listening is an active endeavor. Gather additional information to clarify what the issue is. ("What other things are bothering you?"; "I'm not sure I understand. Can you explain it again?"; "Tell me what was said and then tell me what you believe.")
    • Active listening also includes hearing the unspoken messages someone may be transmitting. Often, we are so intent on making sure others understand us that we throw up barriers to hearing what they are saying. This interferes with good collaboration.
  • Restating and allowing the other person to confirm or correct our perceptions. Validate the other person's perceptions. ("I understand your concern...", "I heard you say...")
  • Providing honest but tactful interchanges.
  • Staying focused on the goal of the collaboration. Focus on and communicate the positive as often as possible. Avoid divisiveness and a "blaming" attitude. Use 'we', 'us', and 'our' words versus 'you', 'I', 'yours', and 'mine' words.
  • Giving concrete examples such as, "What I've observed is..." or "I've noticed that when...then this occurs."

Why Is Good Communication Important?

When we communicate with families, what are we trying to find out? Hopefully, we are attempting to understand what their concerns, priorities and issues are and to jointly develop goals and outcomes that are realistic for their child. Why is it important to do this? Good communication with families:

  • leads to the establishment of a positive relationship based on trust and confidence.
  • allows you to get to know families and lets them get to know you.
  • gathers critical information the family wants you to know about their child.
  • gives them a chance to share their wants, needs, concerns, and fears.
  • helps you determine motivation and expectations - yours and theirs.
  • clarifies cultural and family values that are important to the family.

Obstacles to Good Communication

What are some obstacles to communication? Can you see where the factors listed below could be barriers to communication and establishing collaborative relationships?

  1. Ego
  2. Differences in degree of knowledge
  3. Differing purposes for communicating
  4. The use of jargon and technical language
  5. One-way communication
  6. Emotional distance
  7. Assuming you know what the other person is going to say, or is feeling
  8. Feeling defensive
  9. Letting your mind wander
  10. Being in a hurry. The pressure of time.

Culture Differences and Communication

Think about how cultural differences between families and professionals might lead to miscommunication and conflict. Be aware of the different styles of interactions between families and professionals in various cultures. Consider the impact on conflict resolution when differences arise between the family and the professional. Some issues to be aware of:

  • Importance of saving face in some cultures
  • Importance of preserving harmony - not being confrontational
  • Emphasis on indirectness and subtlety

The cultural frame of reference you have may prevent you from understanding someone else's method of communication. The culture we were raised in carries with it a set of expectations and norms about how we function in the world - how we interact with family and community members, our feelings about higher authority, how we deal with conflicts and communication, etc. "Verbal communication, including voice tone, the pace of speech, modulation, pauses in conversation, how interruptions are perceived, or how quickly one gets the point in a conversation are all derivatives of cultural learning" (Jordan, 2001, p.13) It is important when dealing with others from cultures different than our own to suspend assumptions about how someone is acting or speaking and consider some alternative meanings of what they are doing or saying. It is important to examine our own perceptions and avoid making premature judgments or conclusions. (Bruns & Corso, 2001; Chen, McLean, Corso & Bruns, 2001; Friend & Cook, 2003; Thorp, 1999)

While the United States is viewed as an individualistic culture, most of the world's cultures and most immigrant groups in America are more collectivistic. Other collectivistic groups in the U.S. are African American, Native American, and Alaskan Native cultures.

Different cultures value different attributes in individuals. These attributes or value orientations usually exist along a continuum, from individualism to collectivism (Friend & Cook, 2003). Individualistic cultures place emphasis on individual goals, personal achievements, fulfillment, and competition. Collectivistic cultures value interdependence and the cohesion of the group. Differences occur in many arenas of everyday life - communication, social interactions, family life style, child rearing techniques, etc.

Another cultural consideration important for communication is whether the culture is "low" or "high" context. Low-context cultures communicate in direct, concise, verbal ways where detail and logic is valued. The United States is considered a low-context culture. High-context cultures, on the other hand, "rely less on verbal communication than on understanding through shared experience, history, and implicit messages. Fewer words are spoken and less emphasis is placed on verbal interactions" (Lynch & Hanson,1997, p. 68). More emphasis is placed on nonverbal cues and messages. Native American, African American, Latino and Asian cultures are considered high-context cultures. This has implications for effective communication between low and high-context cultures. Let's look at some cultural features among four minority cultures. Notice ways in which they may differ from the dominant U.S. Anglo-European culture. Remember that these are general characteristics on a continuum and may not apply all the time to all families (Kalyanpur & Harry, 1999; Lynch & Hanson, 1997; Tharp & Yamauchi, 1994).

Individualistic Collectivistic
Low-context: Direct, explicit communication - "get to the point." High-context: Indirect cues, communication relies on context of the conversation and past experience.
Talk: Self-assertion is achieved through talk; talk used to achieve comfort in a group. Silence: Silence is valued and used communicatively; comfort derived from silence.
Directness: Individuality and uniqueness are asserted; opinions are expressed to disagree, persuade, and avoid ambiguity. Indirectness: Hints and subtle cues are used and ambiguity tolerated to maintain harmony.
Uneven turn-taking: One party may dominate; both parties may introduce topics and speak at length about them. Balanced turn-taking: Turns distributed evenly; each party takes short turns and does not randomly shift topics.

Based on Watkins, R., & Eatman, J. (2001). An Introduction to cross-cultural communication. (Technical Report #14; Chapter 2). Champaign-Urbana, IL: Culturally and Linguistically Appropriate Services for Early Childhood Research (CLAS) Institute.

Harry, Kalyanpur and Day (1999) propose a model of cultural reciprocity to assure families are actively engaged in the special education process. This model can be effective in early intervention also. The four steps in the model have been adapted for early intervention and include:

  1. Identify what cultural values are embedded in the professional's interpretation of a child's developmental issues or in the recommendation for services.
  2. Find out whether these values are recognized by the family, and if not, how their view differs.
  3. Acknowledge and respect any identified cultural differences, and fully explain to the family the cultural basis of the professional assumption.
  4. Through discussion and collaboration between the family and the professional, determine the most effective way of adapting professional interpretations or recommendations to the value system of the family (pp.1-12).

Families try to strike a balance between hope for the maximum that their children can achieve and acceptance of realities and limitations. They are never completely certain whether or not their children are reaching full potential, and they often feel pressed to obtain services for their children "before it's too late." At the same time, early interventionists face requirements of accountability and procedures that families experience less directly. Although parents and professionals may have differing perspectives, trusting relationships can be developed. The challenge is to develop mutual frames of reference and common goals between families and professionals. This is done through building effective parent-professional teams in which family members truly participate and can have an impact on their children's progress.

What was once known as "family assessment" is now termed "family-centered information gathering." Family-centered information gathering reflects a new perspective and refers to the process of the professional and family talking together to identify the family's concerns, priorities, and resources (CPR) (IDEA, 1997). This is an ongoing process that begins with first contacts, continues through the evaluation and assessment process, and on to development and implementation of the Individualized Family Support Plan (IFSP) in natural environments. Professionals should strive to build a strong relationship with families based on mutual trust and respect and supported by cultural competence, while they attempt to understand the family's concerns, priorities, and resources. It is important to note that the family's participation in this information gathering is strictly voluntary and is not required under Part C of IDEA. Federal guidance indicates that it must be with the concurrence of the family.

Helping Families Prepare for Assessment of Their Child

How do you help families prepare for the assessment process? Explaining the steps in that process and what to expect can ally families' concerns and fears. Make sure information about the assessment is complete and accurate and presented in such a way as to maximize understanding. Explanations may need to be given several times and in different formats. Written material following a verbal conference gives the family time to study what was said and process the information. Ask families if they have any questions they would like to see answered during the assessment. Also remember the family has valuable information to share about their child. They know the best time of day for the child, his or her issues with other adults, the best way to interact with the child, the child's likes and dislikes, and other factors that may positively affect the assessment process and gather the best information from the child. Families may choose to be actively involved in the evaluation and assessment process or they may prefer a more passive role. The choice should be up to them.

Sharing Assessment and Evaluation Results with Families

How are assessment and evaluation results shared with families? If families are active participants in the process, it can make sharing information about the results easier. Whatever is shared must be in a format that is useful to the family. Discussions can occur during the process of the assessment and evaluation or a meeting with the family can be held afterwards to discuss the results. Follow up either by phone or in person to answer any questions can also occur and a written report for the family (in their primary language) is vital. As a member of the team, the family needs the same information as other team members. Results of assessments and evaluations should be shared as soon as possible with families.

Culturally Sensitive Assessments and Evaluations

Standardized evaluations and assessments may be culturally incompatible for some families and their children. Are there assessment protocols in the family's primary method of communication? Are the assessments culturally sensitive? For instance, in some countries, like Turkey, young children are held and carried by adults for a much longer time than American babies. A child from that culture may not meet the normal developmental milestone for walking as soon as other children. Many children from Hispanic families are fed by adults long after an Anglo-Euro-American child has begun self feeding.

Family Impact on Everyday Routines, Activities, and Places (ERAP)

Early Steps system supports services to children in "everyday routines, activities, and places." This is also known as ERAP. This terminology was adapted from the more formal federal language calling for services in "natural environments". While this has been discussed in other modules, the important concept to remember here is that, in order to provide services to children in ERAP, we need to communicate and listen to what families want as far as the routines, activities and places for interventions and services for their child. We need to ask ourselves and the families "Why is this the best routine, activity or place in which to address the intervention? What will be accomplished by providing services here? Who will provide the services (primary service provider, parents, others)? When will they occur? How will they be provided?" Whatever decision is made for ERAP, families must be involved from the beginning and all options, pros and cons discussed. If for some reason, services are not provided in ERAP (natural environments), a clear and valid justification must be provided.

Engaging Families to Learn About Their Concerns, Priorities, and Resources

The words "concerns, priorities, and resources" (CPR) are used to define the process by which information is gathered from families about what they want for their children and themselves and how professionals can help them achieve their goals. Based on identification of the CPR of the family, the team can begin to develop the outcomes, strategies, and activities on the IFSP that help families meet the needs for their child. The family is the only entity in this relationship that can identify their concerns, priorities, and resources and say what is relevant to them. A concern for a family only exists if the family itself identifies it as a concern. Their priority for their child may not be the one the professional has for the child. That is why it is crucial for professionals to engage families as partners in the process and respect their decisions.

Family Information Gathering Strategies

Family information gathering can be accomplished in a variety of ways (Banks, Santos, & Roof, 2003; Sandall, McLean, & Smith, 2000). The most basic (and perhaps most important) is a simple communication approach as the relationship between family and professional builds. This informal approach is fostered through conversations and sharing stories. The importance of first impressions can't be emphasized enough when we are beginning to work with families. A professional who first approaches families in a respectful manner that reflects an understanding of their culture and their situation is laying the groundwork for a strong partnership to follow. This should occur at the first visit with the family. It can take a long time to "undo" the damage made by a negative first experience between a family and a professional. Think for a minute about a negative first experience you've had with someone. Did it take you long to change that original viewpoint? Have you changed it at all?

It is much easier to work toward creating a positive first experience with families than having to spend a lot of time afterwards correcting negative impressions. The personal style of the professional should enable him/her to develop patience and act non-judgmentally with families. Remember to share power with the family. Let them do the talking. Focus on strengths and successes. Approach families from the perspective of wanting to understand what is important to them. Begin the journey with them by sharing information with them that will allow them to become knowledgeable decision-makers on the team. Share information about yourself to show your willingness to form an equal partnership.

Communication Styles

Communication is more that just something we do verbally. We must consider the impact of tone of voice and body language on communication. Our body language affects how we communicate and may give rise to misunderstandings. We may be indicating verbally that we are in support of what another person is saying, while hands on our hips, our arms crossed over our chest and our posture of pulling back from the table indicate quite another message. Cultural differences in communication and body language can also impact communication.

"How" we communicate with others is as important as "what" we communicate and can help or hinder our ability to communicate and build relationships. Being aware of our own style of communication helps the collaboration process. For instance, if you are someone who gets to the point quickly and doesn't see the need for long discussions about a topic when it's pretty obvious to you what the solution could be, you might find yourself being impatient with someone who needs to look at an issue from a broad perspective, weighing all the possibilities before making a decision. That person, on the other hand, may feel you are rushing things and haven't carefully considered all the options.

Here are some common communication styles that you might encounter (Briggs, 1997). Can you see yourself in one of these?

  • Direct - To the point. Need to get to the bottom line quickly.
  • Indirect - "Global" thinker. Looks at the big picture. May take more time to come to a decision.
  • Dominating - In charge. May not always absorb input from another. Has a plan and wants to move it forward.
  • Cooperative - Non-judgmental. Can serve in peacemaker role and bring others to consensus. May shy away from confrontation.
  • Non-verbal - Does not actively engage in discussions, but silence may be the way they express themselves. Watch for body language.

Importance of Community Partnerships

As we saw in the last lesson, one of the biggest differences between the previous service delivery system and the enhanced Early Steps system is that most supports and services provided to the child and family happen now in the family's everyday routines, activities, and places (ERAP). Places can be the home, childcare, neighborhood play group, community settings, etc. In addition, informal community resources and supports are identified and utilized for services. Another difference is the use of the Primary Service Provider (PSP). The use of this model of service delivery requires strong working relationships among all the professionals who are listed on the Individualized Family Support Plan (IFSP).

In Lesson 2 we learned that families vary in make-up, stability, socio-economic levels and education. They have various expectations for their children. It is important to realize that the family functions in the surrounding community. Communities vary in size, history, geography and socio-economic levels. Within these communities are entities that care for and/or have contact with families in the Early Steps service delivery system. They need to work in partnership with the other important people in children's lives. The "whole child" must be considered as well as all of the factors that may affect this child - in the community as well as the home.

Collaborating with Other Professionals

Why Is Good Communication within the Community Important?

As stated in Lesson 2, it is critically import to communicate effectively with families to establish relationships. This is also true in order to establish good working relationships and build collaborative partnerships with our professional peers. The same critical communication skills to enhance collaboration with families also apply to professionals. (Banks, Santos, & Roof, 2003; Briggs, 1997; Dunst, 2002; Jordan, 2001; Rush, Sheldon, & Hanft, 2003) This is a requirement of the Early Steps service delivery system. Early Steps Service Delivery and Guidance: Delivering Services in the Routines and Daily Activities of Young Children with Disabilities and Their Families (2005), states, "It is intended that each provider will interact with all other service providers... (p. 19)'.

In the section on Team Considerations the paper states: The primary purpose of the team based primary service provider approach is to pool and integrate the expertise of team members so that more efficient and comprehensive assessment and intervention services may be provided. The communication style in this type of team involves continuous give and take between all members (especially the family) on a regular, planned basis. (p. 17)

Go back and re-read the important components of communication for collaboration with families in the "Communicating with Families" section of Lesson 2. Instead of putting the statements in the context of building relationships through communication with families, think about building relationships with your professional peers. Do the same communication components apply?

Can you think of other components that apply?

Perhaps the most important skill professionals can have when working in collaborative relationships is to stay focused on the goal of the collaboration. By focusing on and communicating the positive as often as possible and emphasizing the areas of common purpose, professionals can be a powerful force to bring about positive changes for families as they negotiate the often confusing terrain of early intervention. Developing a team attitude with professional peers is the key.

It is also important to maintain regular, on-going contact with other early intervention professionals. This serves two purposes. One is to keep everyone informed about funding options, program characteristics, or changing family issues (priorities, concerns or circumstances). Another is to develop and enhance our working relationships to do our jobs more effectively and support ourselves. Working together as a team requires many skills and necessitates many interactions with others. At times, you can feel overwhelmed by all there is to do and what is still undone. Take time to support and communicate with one another. Talk with fellow team members to see if they are feeling the same things you are. Don't hesitate to ask for help or advice when you don't know what to do.

Who Are Some of Our Community Partners?

The Role of the Family Resource Specialist (FRS) in Early Steps

Family Resource Specialists (FRS) are funded by the Department of Health, Children's Medical Services, to assist families of children with disabilities, ages birth to three, in accessing services within the Early Steps system. They serve as a community link to support family-centered efforts and activities within Early Steps and work under the general supervision of the Early Steps Director/Coordinator. They are parents of children with disabilities who are involved in the community and have knowledge of local resources. They are often the family's first contact with the Early Steps system, and as such, play a vital role in giving families a good start in Early Steps.

The FRS helps ensure that families are supported within the system. Some of their responsibilities include:

  • Family Centered Assurance Activities - Enhancing and advocating for family-centered services and efforts within community agencies, including soliciting feedback from families receiving Early Steps services.
  • Interagency and Community Networking - This includes working closely with local and state parent organizations and exchanging information about programs and initiatives for children among community programs and agencies. It also includes working with other community agencies on transitions.
  • Personnel Development - Participating in local and state informational meetings and trainings on issues relevant to families of children with special needs.
  • Training and Education - Participating in staff and provider training, workshops and other activities as presenters and participants to ensure a family sensitive focus, in addition to providing technical assistance, training, and leadership for families. Facilitating playgroups and distributing newsletters are two additional activities they may provide.
  • Family Support - Determining the need for and developing parent-to-parent support resources. Heightening awareness of family-centered services and organizations within the community and state.

Critical Partnerships for Collaboration with the Early Steps System

While children with disabilities, birth to age three, are served primarily though the Early Steps service delivery system, there are many public and private entities and agencies that also provide some services to children with special needs and their families. Some of these are listed below. How many do you work with?

  • Head Start. There are four components in the Head Start system providing programming and services to low income families with children birth to five years old. In addition to the Head Start Preschool program, there is also Early Head Start, which focuses on expectant parents and infants and toddlers, Redlands Christian Migrant Association, and American Indian Head Start.
  • The Partnership for School Readiness. This project funds the local Early Learning Coalitions around the state. It was established to ensure that all children are emotionally, physically, socially, and intellectually ready to enter school, ready to learn. Additionally, the crucial role of parents as the child's first teachers is recognized. The target population is children birth to five in childcare settings.
  • Transition Project. This project trains and provides technical assistance to community teams to build community-wide transition systems and interagency agreements to support the transition of children from Early Steps into the Section 619 Prekindergarten (Pre-K) Program for children with disabilities and from Pre-K to regular or special education in the schools. This Project is now part of the Technical Assistance and Training System (TATS) funded by the Department of Education.
  • Diagnostic and Learning Resources System (FDLRS) Supports state and local initiatives in partnership with communities and families of children with disabilities. FDLRS is responsible for the birth through 21. This includes providing developmental screening and, when appropriate, comprehensive, multi-disciplinary evaluations for children birth to five.
  • Family Network on Disabilities (FND) This is one of Parent Training and Information Centers (PTIC). Each state has at least one parent center, and states with large populations may have more. There are approximately 100 parent centers in the U.S. Parent Centers train and inform parents and professionals, help families obtain appropriate education and services for their children with disabilities, work to improve educational results for all children, resolve problems between families and schools or other agencies and connect children with disabilities to community resources that address their needs.

Communication and Collaboration

Obstacles to Good Communication

Again, please review the "Obstacles to Good Communication" section of Lesson 2. The ten barriers to communication and establishing collaborative relationships with families listed are the same ones that affect our interactions with professionals in the community.

Are there additional ones you can think of?

Professional Relationships within Early Steps

Personal, Professional, and Agency Values and Beliefs

With the emphasis in the Early Steps system on collaboration and shared roles, it is very important that professionals in the system have a good understanding of their respective roles and varying perspectives. Three sets of values come into play when we look at perspectives.

First, there is our own personal set of values and beliefs that is derived from our upbringing and culture. This would include our beliefs about child rearing, our definition of "family", how we communicate, etc.

Second are those that make up what, in the case of early intervention professions, is seen as important. For example, family centeredness, acceptance of varied parenting styles, and the importance of natural environments.

Third are the agency's values - the distinct beliefs and perspectives of individual agencies. These may include how they cooperate with other agencies, how information is shared, how service coordination is managed, etc. The more these value sets overlap and intersect, the easier it is for a collaborative group to work together (Nelson, 2000).

If there isn't overlap, there must at least be an awareness and respect for varying values and beliefs among all of the participants. For example, an Infant Toddler Developmental Specialist (ITDS) may go into a home where it appears to him/her that the family is not following through on his/her recommendations for intervention with the child when she isn't there. He/She may surmise that the family isn't interested or motivated. The family, on the other hand, sees little value in their daily life for using the specific recommendations, but they would not directly raise the issue with the EI professional. The value sets here aren't overlapping.

In another scenario, a seasoned ITDS feels he/she has had great success with families through the years by "taking care of them" and he/she feels he/she often knows what's best for families, even if the families may sometimes want something else. He/She doesn't understand the emphasis in Early Steps on families actually articulating what they want and working as equal partners with professionals. That doesn't feel right to the ITDS because he/she is convinced that families with young children with disabilities really don't know what they need and are mainly dealing with their "grief" over having a child with disabilities. In this case, the values of the ITDS are in conflict with the agency and professional values.

Can you see how important it is in this system for us to be aware of our own values and beliefs and also the perspectives of our respective professions and the agencies and organizations with whom we work?

Characteristics of the Early Intervention Community System

The Early Steps system is composed of many organizations and agencies. Each has its own culture, complete with a mission and rules and restrictions about what it can and cannot do. In order to work effectively in the system, we must understand what the culture and rules are for all the community agencies with which we come in contact. It's important to know how an organization works in order to be able to work effectively with it.

Reflect for a moment. How someone in Early Steps views a family may be very different than how someone from Child Protective Services views that same family. Workers from both agencies may want to maximize outcomes for that family. Because of their differing perspectives, mission, and rules and regulations, the ITDS and the Child Protective Services caseworker may interact differently with the family and view positive outcomes very differently. For instance, the ITDS may be viewed as a support by the family. He/she may feel the family has made positive progress in embedding motor activities into their ERAP. The Child Protective Services caseworker, on the other hand, may be viewed in a more negative perspective by the family who may fear the child's removal from the home. The caseworker may consider the family hasn't made any progress if his/her goal is for the father to become employed and that hasn't occurred. Each would have a different idea on whether that family was "successful". The key to good collaboration with other professionals is to find the common ground from which you can all work together. You need to work hard to make sure your own frame of reference doesn't interfere with collaboration and good communication.

As discussed in Lesson 2, all the different organizations and agencies that work within Early Steps, with their varying perspectives and missions, are also part of that system and are viewed in a larger context by the family as "the early intervention system". So, in addition to understanding our unique differences, we must also recognize our commonality within the larger context. This is illustrated during legislative sessions where you might see two very different organizations working together to procure funding for infants and toddlers with disabilities. The families and the children with disabilities are what bind different organizations together.

Culture Differences

Different cultures value different attributes in individuals and in the culture. These attributes or value orientations usually exist along a continuum, from individualism to collectivism (Friend & Cook, 2003). This was explained in detail in Lesson 2. As a quick review, individualistic cultures place emphasis on individual goals, personal achievements, fulfillment, and competition. Collectivistic cultures value interdependence and the cohesion of the group. Differences occur in many arenas of everyday life - communication, social interactions, family life style, child rearing techniques, etc. The United States is viewed as an individualistic culture, while most of the world's cultures and most immigrant groups in America are more collectivistic. We need to think about this, not only when we are working with families, but also when working with our professional peers. What are their cultural backgrounds and how does this affect our communication?

Interagency Collaboration

Strong collaborative relationships are built upon mutual trust and respect. Once trust and respect are established, collaborative partners can work effectively during problem solving and goal setting. When differences and disagreements occur, they can be pro-actively addressed. Christenson (2001) states " building creates a climate that fosters participation and a positive working partnership" (p. 23). Trust building doesn't occur by chance or quickly; however, it develops over time through actions that promote and support it. Trust building should be the responsibility of all parties involved. This may be difficult if professionals are wary about working with each other or there has been animosity in the past between agencies.

Interagency Agreements

One way to formalize the process of collaboration is through the development of interagency agreements. Ideally these agreements will be among all the agencies and organizations in a community that work with a particular population. In the case of Early Steps, that will be children birth to three, who have disabilities, and their families as well as sending and receiving programs. The critical partners for collaboration listed in the beginning of the lesson are some of the entities that should participate in an interagency agreement.

Why have interagency agreements? First of all they are mandated by the Individuals with Disabilities Education Act. One of the important aspects of the law has to do with something called "non-supplanting" of funds. In other words, the drafters of the legislation wanted to ensure that the Part C early intervention dollars were not used to supplant services and funding that was already in place and provided by other public agencies. An example might be that the local Association for Retarded Citizens provides funding for respite care, Early Head Start provides inclusive center-based services, and Part C pays for the ITDS to do home visiting in the Primary Service Provider model. Because there is the awareness that families probably need an array of services from many different agencies, interagency agreements are required to ensure that multiple funding sources are put into play so that families are not denied services for which they are eligible.

Interagency agreements can be effective roadmaps to accessing services. They should be viewed as part of the process of collaboration and should change and evolve as funding sources and agencies enter and leave the system. Interagency agreements can cover specific components of early intervention such as transition of service provision, or they can be written to address all of the components of the system. Families of young children with disabilities will experience a transition of services among providers in the Part C system (from the hospital Neonatal Intensive Care Unit to Early Steps services, for instance) and between the Part C and the Sec. 619 Pre-K programs for children with disabilities. Effective agreements result in a smooth process for families and strong collegial relationships among agencies.

Team Meetings in Early Steps

Although there are many times when a team may come together, for the purposes of our discussion here, we will focus on teaming around the development of the Individualized Family Support Plan (IFSP). In Early Steps, this is where conversations take place and decisions about services are made. This occurs as a team decision-making process and while each member of the team may provide significant input into service decisions, the ultimate responsibility for determining appropriate services rests with the participants at the IFSP meeting as a whole. In Early Steps, the membership at the IFSP meeting can consist of some or all of the following, depending upon the needs of the child and the family:

  • Family
  • Infant Toddler Developmental Specialist
  • Occupational Therapist
  • Speech Language Pathologist
  • Physical Therapist
  • Nurse
  • Service Coordinator
  • Specialty Providers: SHINE Provider, Hearing Specialist, Vision Specialist, Behavior Analyst, Nutritionist, Psychologist, Clinical Social Worker, Orientation and Mobility Specialist, etc.

The Early Steps (Department of Health, 2005), discusses the important roles of team members in the section on "A Team Written IFSP":

...Decisions regarding specific services to be included in the IFSP are made through team collaboration and must take into consideration the integration of all areas of development. The level of direct involvement of providers will vary depending on the individualized needs of each child and family. The first consideration must be the family's priorities and their desired functional outcomes for their child and the needs of the family in relation to enhancing their child's development...Ultimately, teams must work collaboratively to develop a comprehensive plan of services that supports the child's ability to function in their natural environment (p. 18).

Purposes of Team Meetings and Participant Roles

It might be a good idea to look over that module again to refresh your knowledge about teams as we begin to explore the development of an effective team meeting. To be an active participant in a team meeting, each member must understand the purpose of the meeting, be able to use group processes such as collaboration, decision by consensus, open communication, and be accountable and committed to the process. In addition, each member must understand his/her role and there must be mutual trust in and respect for all members. Flexibility and a sense of humor are also valuable assets. This may seem like a daunting task! Careful pre-planning before the meeting and sharing of pertinent information in a timely manner will help facilitate the process and assure success.

It is important to remember that team meetings are a part of the early intervention system. They are not single, unique events, but rather are important processes in ensuring that the right outcomes are attained. Team members must not only cooperate and share information, they must also actively seek solutions and share resources.

Planning and Conducting an Effective Team Meeting

The next sections of this lesson will illustrate some components of a team meeting for writing the initial IFSP. You will find answers to the following questions.

  1. What planning needs to occur to ensure a successful team meeting?
  2. How do we encourage active family participation in the process?
  3. What strategies can we use to enhance the success of the meeting?

While the purpose for IFSP meetings is straightforward (to make decisions about child and family outcomes and services), the process requires good planning to ensure appropriate results. It is important to consider some general components in order to make your meeting successful. You might want to ask yourself the following:

  1. What is the purpose of the meeting?
  2. Who should be involved?
  3. What are the roles and responsibilities of each team member at the meeting?
  4. When should it occur? And where?
  5. How much pre-meeting planning should occur?
  6. How does the meeting itself go? Do I need an agenda?
  7. What needs to occur for follow-up?

Planning With and Preparing Families for the Meeting

Since families are key participants in IFSP meetings, it is essential that they are prepared to share their concerns, priorities, and issues with the rest of the team at the meeting. They also need to understand their role and the responsibilities which accompany that role. They need to understand the process of building consensus and how to handle disagreements if they arise. How can you help them prepare?

Planning With and Preparing Your Professional Peers for the Meeting

While families are key participants in IFSP meetings, they are members on a team that is also comprised of early intervention professionals. Team decisions should be just that - not made solely by families or professionals, but rather together in collaborative partnership. According to the Early Steps Service Delivery and Policy and Guidance (2005), "While each participant in the IFSP meeting provides significant input regarding the provision of appropriate early intervention services, the ultimate responsibility for determining what services are appropriate for a particular infant or toddler, including the location and approach of such services, rests with the participants in the IFSP meeting" (pp. 15-16). It is therefore, essential that professionals be well prepared for team meetings and understand their roles and the responsibilities. They too need to understand the process of building consensus and how to handle disagreements if they arise.

Professionals attending an IFSP meeting should include persons who have evaluated or worked with the child and family directly. The team is composed of persons who have been the most involved with the child and family in the past six to twelve months; or, at the initial IFSP meeting, have just evaluated the child and family. Hopefully, it would not be a high number of people, and it would not include persons whom the family does not know.

Ensuring an Effective Meeting Requires Planning with Both Families and Professionals

We're going to spend some time looking carefully at the meeting planning process for an IFSP meeting. Important decisions are made here and all participants should be well prepared.


First, let's look at the logistics of the meeting. Considering the family's preferences when planning logistics is a critical component.

  • Where will the meeting be held?
  • What time of day is best for families to meet? And what day of the week?
  • How long will the meeting be expected to last?
  • Who should be there?
  • What is each person's role?
  • Who will facilitate the meeting? Has pre-planning been completed?

Purpose of the Meeting

Make sure the family and the professionals know what they are there to discuss.

  • What is the purpose/specific outcome of the meeting? Initial IFSP? IFSP review?
  • What will be the agenda?

Before the Meeting

Pre-planning with the family and the other team members for the day of the meeting is crucial.

  • Will special accommodations or supports be needed by the family at the meeting? If so, what might they be?
  • What can you do to help ensure families are prepared and informed?
  • How will you help the family understand how team decisions are made?

During the Meeting

Much has been done to prepare families and other participants for the meeting. Now that we have reached the actual meeting, there is still more to consider.

  • How can you create an environment in which everyone feels welcome and supported?
  • What facilitative elements will help the meeting go smoothly?

After the Meeting

Although the meeting may have ended, it is important to look at what comes next.

  • What happens after the meeting to make sure families and professionals learn from and value the experience. What happens with the paperwork?

There certainly is a lot to think about, isn't there? Because there are many details to deal with when planning an IFSP meeting, having a checklist or worksheet to assist you can make the process go smoother and assure that you don't miss something or, more importantly, someone! You will be asked to do an activity at the end of this lesson using an IFSP meeting planning worksheet.

We've talked about preparing both families and other professionals to participate in an IFSP meeting. The table below might assist all team members as they prepare for meetings and think about their role as active participants at the IFSP meeting.

Questions for Professionals and Families about IFSP Meeting Participation

Professionals Families
Do I truly believe parents are the experts with respect to their children? Do I feel I am a partner with the professionals on my team?
Do I place the same value on the family's time as my own? Do I educate myself about the family and child prior to meetings? Do I accept my share of the responsibility for making team decisions for my child?
Do I avoid jargon and speak plainly? Do I articulate my issues, priorities, and concerns to professionals clearly and assertively?
Do I ensure that families understand written material and verbal discussions? Are materials in the family's native language or other mode of communication? Are interpreters used when necessary? Do I treat team members as individuals and work on establishing good working relationships?
Do I schedule appointments at times and places convenient to families? Do I follow through when I have agreed to participate in a plan of action?
Do I share information with other professionals to assure there is no duplication of services and key players have key information to maximize outcomes for the family and child? Are my expectations of myself, my team, and my child realistic?
Do I communicate effectively with families and other professionals? Do I truly listen? Do I encourage questions and dialogue? Do I keep team members informed? Do I communicate quickly with professionals when something significant happens?
Am I sensitive to cultural differences? If family members and other team members are from a culture other than my own, do I know how to communicate effectively with them? Am I sensitive to cultural differences? If other team members are from a culture other than my own, do I know how to communicate effectively with them?

When Differences Arise

How do you handle the meeting when competing outcomes or goals emerge among team members (including families)? First of all assume that this will happen from time to time as the needs and perspectives of families and other team members evolve. Conflict is a natural occurrence of working together as partners and is inevitable. It shouldn't necessarily be viewed as negative. If team members have developed a level of trust and respect for one another and can communicate well, it can lead to the growth and maturity of the team.

It is important when resolving conflicts to focus on solutions, not only the problems. Keeping the goal in mind helps individuals focus on what is important. Below is a list of necessary skills family members developed for professionals in order to manage conflict with families (Patrin & Donovan, 1998):

  1. Acknowledge that a conflict exists.
  2. Seek to understand before being understood.
  3. Develop self-awareness of your motives.
  4. Find positive points of agreement.
  5. Define and clarify issues and agree to work toward shared goals.
  6. Stay focused on today's issue - stay in the present.
  7. Set a level playing field.
  8. Know your own skill level.
  9. Build a reciprocal emotional bank account (relationship) with the parent.

Building Consensus

Reaching consensus is vital to collaboration during IFSP meetings and assures that everyone, including the family, supports the final decision. (Friend &Cook, 2003) Consensus occurs when the concerns of all are addressed in a manner that satisfies each. When consensus is reached, everyone goes away with the feeling that they can live with the decision, even if it's not exactly what they wanted.

Cultural Considerations in Managing Conflict

Think about how cultural differences between families and professionals on the early intervention team might lead to conflict if there is a "disconnect" between the family and professionals' cultural values. Families may not see the value of outcomes that don't match their cultural values. Strategies that don't make sense to families stand a good chance of not being implemented by them at home.

It is especially important for you, as the professional, to understand your "cultural frame of reference" and that of the family. The culture we were raised in carries with it a set of expectations and norms around how we function in the world - how we interact with family and community members, our feelings about higher authority, how we deal with conflicts and communication, etc. Successful outcomes and strategies will reflect the family's cultural frame of reference as well as that of professionals.

Also, if disagreements arise in team meetings, be aware of how various cultures react to conflict when seeking consensus and making decisions. Some issues to be aware of include:

  • The importance of saving face in some cultures.
  • The importance of preserving harmony - not being confrontational.
  • Emphasis on indirectness and subtlety.

When working with others from cultures different than our own, it is helpful to suspend assumptions about how someone is acting or speaking and consider some alternative meanings of what they are doing or saying. It is important to examine our own perceptions and avoid making premature judgments or conclusions (Bruns & Corso, 2001; Chen, McLean, Corso & Bruns, 2001; Friend & Cook, 2003; Thorp, 1999).

Be aware that an individual's level of comfort in a team meeting can be affected by his/her culture and style of interacting. If you don't understand cultural differences, you may make assumptions about families or your professional peers by misinterpreting their behaviors (Banks, Santos, & Roof, 2003). For instance, parents from some cultures would not feel comfortable disagreeing with the professionals in a team meeting and might appear to agree to a plan of services that in reality they do not agree with . This may result in their not being home when the provider arrives at the appointed time or they may not follow through on intervention. Often they become labeled "non-compliant parents" when the real issue is the professionals' misinterpretation of behaviors and communication.

Not all cultures adhere to the family-centered approach used in the United States. Some cultures view professionals as having the final word in decisions about services. For some professionals, it may require a change in mindset to work in the "American" culture of early intervention where differences are valued and sensitivity to families is crucial.

Family Networks

Families of school age children with disabilities can connect with each other for information and support at school functions and organizations such as school open houses, sports events and the Parent Teacher Association. They may have been in the early intervention/special education systems for a long time and know where and who to go to for information. Families in the early intervention system have fewer opportunities for these interactions with other families, and because they are just beginning the journey with their child, may not know what resources available. There are numerous family information and networking resources and the nation that can connect families within the Early Steps system. The ITDS should be aware of them and be able to provide them as resources for families with whom they work. The following is a brief list of some that address family issues in general while others may focus on specific disabilities.

The Family's Role in Developing Outcomes

With the focus in Early Steps on everyday routines, activities, and places (known as ERAP), the collaborative role of families on the team becomes even more crucial in developing outcomes. We need to know much more about what families do and what is important to them when services are provided in the ERAP model than we ever did when families came to us for services. The strategies to achieve the outcomes are designed to build upon the routines and activities of the family's everyday life. Therefore professionals must look at how interventions can be incorporated into daily activities. These activities include play (playing with pots and pans in the oven drawer, block play, following the figures on a mobile, etc.), daily routines (bath time, changing diapers, eating, reading stories, etc.), and planned activities (grocery shopping, going to the park, activities at child care, etc.) (Cripe & Venn, 1997; Rugg, 2000). Functional outcomes are achieved through the use of functional strategies which, in turn, lead to the development of functional skills.

Through the Looking Glass - Strength Based Perspectives

In the story of Alice in Wonderland, Alice went through a looking glass (mirror) and found herself in a very strange world on the other side. She struggled very hard to make sense of a place where all the rules that applied in her world did not apply in this strange place. The characters she encountered often made her feel uninformed and weren't very helpful.

When children and families in the early intervention system were regarded as "consumers of therapy services" with professionals assessing the child and recommending treatment, they often felt like Alice in a strange, new world. The role of the family and their perceived competence was very different than it is in the enhanced Early Steps system. If families are viewed as experts about their children and share equally in the decision-making process with professionals, they then set the priorities for outcomes and services. They begin to make sense of a world into which they have some input. They are viewed from a "strength-based" perspective rather than entities needing to be "fixed". Because children are to receive services in ERAP, it is important for professionals to actively engage families in service delivery and interventions and understand the contributions they make to the process of their child's development (Department of Health, 2005; Vacca & Feinberg, 2000).

Partnering to Develop Outcomes

In the old service delivery system, outcomes for children were often stated on the IFSP as therapies. In the enhanced Early Steps system, they are stated as basic functional outcomes. This promotes developmental skills that are important to the family and other primary caregivers. Because these outcomes will change as the child develops, it is important to keep in mind that team members will need to discuss child outcomes and progress on a regular and ongoing basis. It is especially important to talk with families about what they are seeing in the way of progress in the home setting.

Functional outcomes are a result of the information gathering process with families to determine their concerns, priorities and resources. Once these have been determined they should be prioritized. The family and primary service provider can then focus on a few at a time. A recommended practice is to develop less than five outcomes on an IFSP in order to concentrate on those most important to the team. The IFSP can be reviewed by the Service Coordinator or Primary Service Provider every three months and adjustments made and/or new outcomes added by the team (Shelden & Rush, 2004).

Developing Functional Outcomes

Just what is a functional outcome? A functional outcome is what a family wants to see their child do as a result of an intervention. It may also be what they want to see for themselves in relation to the child's development. It can focus on any area of the child's development or family functioning that the family feels is related to its ability to enhance the child's development. They are positive action statements that outline what changes will occur. They are not focused on the deficits, but rather what can be. Functional outcomes become the foundation for developing strategies, activities and services to bring about those outcomes. These are some components of functional outcomes:

  • They are practical and meaningful to families and the language used to describe them is understood by all.
  • They are not written to "stop" something, but rather to promote an outcome that will be helpful to the child and family.
  • They reflect the priorities and activities of the family.
  • They link a developmental skill with what is important to the family. Answers the "What will be different?" question.
  • They improve the child's performance of a skill over many different settings.

Questions to ask families to help determine outcomes (Adapted from Pam Winton):

  1. If you were to focus your energies on one or two things for your child, what would it/they be?
  2. If you could change one thing about (event or area of importance), what would that be?
  3. Imagine six months down the road. What would you like to be different in terms of (event or area of importance)? Are there some things you would like to remain the same?
  4. What would you like to accomplish in 6 weeks? In six months?

A functional outcome is stated in terms of:

  1. What is to occur (the process)?
  2. What is the expected result (the product)?


The table below contains some samples of outcomes done the "old" way and how they would sound as functional outcomes in the enhanced system. Which sounds more "doable" to you?


Old Style Outcome Statements Functional Outcomes
Mary will follow a 2 step direction, such as: "put the ball in the box and bring it here. Mary will put on her shoes and get her sweater when her Mrs. Smith asks her.
Katy will crawl using a hand/knee pattern for a distance of 3 feet when placed in the correct position. In order for her to be more independent, I would like Katy to be able to get to the kitchen table from the living room.
Beth will put 5 small pellets into a small neck bottle within 60 seconds. Beth will be able to pick up and eat Cheerios with her fingers by herself.
John will produce consonant/vowel combinations with 80% accuracy. John will call "mama" or "dada" when he wants their attention.
Joseph will be able to recognize himself as the cause of an event. Joseph will play with his pop-up toy by himself.

Here are more samples of functional outcome statements:

  1. Shandell will begin walking on his own so he can increase his independence and exploring.
  2. Joel will learn to sit without help so he can play with the other children better.
  3. Maria will use single words to ask for things she wants in order make it easier for others to know what she wants.
  4. Julie will learn toileting skills so she can attend play group.
  5. Joan will learn sign language so she can communicate with Zoe better.


Strategies are activities used to accomplish outcomes and should be developed based on family routines and daily activities. Strategies should be what families are already doing. They should fit in with their life and family activities. For instance, if an outcome was to "help Susie walk better so she could play outside with her friends", a strategy might be that the child would accompany the mother or father on an errand to a store and help push the cart to help increase her stability. This activity could also use strategies to address outcomes of improving communication, small motor ability, large motor ability, etc. by having the parents engage the child in conversation about what they see at the store, reaching for items, etc.

Questions to ask families and others to help determine strategies (Adapted from Pam Winton):

  1. What are some ways of getting to where you want to go?
  2. Who needs to be involved in getting done what you want to do?
  3. What would each of you need in order to accomplish what you want?

Next, you will explore a valuable web resource to aid in your understanding (through pictures) of strategies that work for children and families in the framework of natural environments. This research based resource is the Puckett Institute with physical locations across the United States. The Puckett Institute has served as a national leader in conducting research studies on functional outcomes and strategies in natural environments.

  1. Click on "The Power of the Ordinary" on the right navigation menu.
  2. This screen will give you options to explore.
  3. Click on slide show - then click to view either the small or large version. Both are very brief. The difference is primarily in the download time. Remember that you have used "Real Player" for videos in earlier modules and that will work here as well. The short video you are about to see will reinforce what you learned earlier about natural environments in planning functional outcomes and strategies. This will take less than one minute to view.
  4. Next, click on "Everyday Times" to see a listing of visual Newsletters.
  5. View the following for some fun and interesting ideas:
    • Dig In!
    • To Market, To Market...for Super Learning Fun
    • Social Butterfly Babies
    • Someone's in the Kitchen
    • Splish Splash

Gathering Information to Develop Functional Outcomes

Several methods can be used effectively to gather information that can be used when developing functional outcomes. These include interviews of families and caregivers, observing the child and family in daily routines, and family surveys and rating scales.

Information Sharing

When a good relationship has been established with the family, they will feel comfortable sharing information. The exchange of information should be very informal, and when questions are asked during these conversations, they should always be open ended. The professionals should be aware of the family's comfort level. It is important to have a conversation with the family - not an unnecessarily intrusive interview. Don't ask questions about areas of the family's life for which you have no need of information. Rather, ask yourself, "What do I need to know in order to help this family?" As the relationship grows, so will the level of trust and more in-depth conversations can take place. The purpose of this information gathering is to gain more insight and be able to assist the family in identifying concerns, priorities and resources.


The use of observations during evaluation and assessment has been discussed in detail in Lesson 2 of Module 3. Please review that section again before proceeding. Observations can be used to look at the relationship between the family and the child and can provide very helpful information about their routines to use when developing functional outcomes for the child and family. A formal tool may be used to do this or observations can be done informally. Whatever method is used, it is crucial that the observer not make judgments about the family based on what they have seen. Practitioners must be very aware of the family's perspective and the possibility for their own prejudices.

Surveys and Rating Scales

Surveys and rating scales are additional methods of gathering information from families (Trivette & Dunst, 2003; Murphy, Lee, Turberville, Turnbull & Summers, 1991). If these are used, it is important to be aware of the readability level of the tool and the primary language of the person completing it. Also, make sure they are asking questions that are relevant to the kind of information you are gathering. "Formal interviewing, observation, and surveys should be used cautiously and only if that is the family preference.... The important concept to remember is that family information gathering efforts serve to focus attention on concerns and issues identified by family members, and to communicate to family members that they are important and that their perceptions of their child are important" (Banks, Santos, & Roof, 2003, p. 17.) If we look upon families as partners in this process, it is important to use methods of information gathering that meet the families' comfort levels and are viewed as the least intrusive.

Everyday Routines, Activities, and Places (ERAP)

Functional outcomes should be achieved with strategies used in the natural environment or the everyday routines, activities, and places in which the child and family live. Young children learn informally throughout the course of their day, wherever they are and whatever they are doing. Everyday experiences, events, and situations provide children with many learning opportunities that promote and enhance their development. These everyday experiences are naturally occurring learning opportunities. For example, having a child reach for and grasp a cup or a toy with both hands is something that most children would attempt without prompting, if the materials were within sight and reach.

Services provided in ERAP using the Early Steps Primary Service Provider model will require close collaboration between professionals to assure that the family member or caregiver will be given complimentary guidance on a procedure. In other words, the ITDS won't tell the caregiver to do one procedure while the physical therapist recommends another. This is illustrated in the Early Steps Service Delivery Policy and Guidance document (2005).

Therapists in early intervention programs must consider a variety of options and strategies to address therapeutic goals within the context of a family's desired outcomes for their child and the family. As functional outcomes change, frequent communication between team members will assist in this exchange of information (p. 21).

All members of the team should understand the caregiver activities so they can select appropriate activities to be embedded into daily routines. This should be done in a manner that is supportive, complimentary, or at least not at cross purposes to other developmentally beneficial activities (e.g., if increased vocalization during diapering is a functional outcome related to communication, the physical therapist can incorporate the technique of waiting for a verbal response as she assists the caregiver in also embedding techniques to address movement issues during the parent-child diapering interactions).

Linking Outcomes to Assessment and Developmental Skills

The type of system now in place in Early Steps uses a "linked systems approach". This approach uses information gathered from families and professionals during assessments to develop the functional outcomes. These outcomes, in turn, determine interventions and strategies. The child's development and progress based on the use of these interventions and strategies is a means of evaluating the outcomes. "Using a linked systems approach, an early intervention specialist implements a very fluid and dynamic assessment-intervention model to meet the needs of rapidly developing infants and toddlers and their families in early intervention settings" (Rugg, 2000,p.2).

Strategies for functional outcomes should help promote generalization of those outcomes in many different environments - at home, at the store, at the beach, at child care, etc. Interventions can target several outcomes in one activity. For example, when a child is eating, several developmental skills can be addressed - fine motor, verbal, and social skills, etc. Effective activities will be child directed and support their interest. These strategies should help the child become more independent.

Evaluating Functional Outcomes

Developmental gains are one indicator that functional outcomes have been met. If the functional outcomes and the strategies to reach them are well written, we will be able to evaluate them by answering these questions:

  • "How will you know when you have accomplished the outcome?"
  • "What will be different for the child (and/or the family) as a result of these strategies?"
  • "What is the child doing differently?"

The use of criterion-referenced measures lends itself well to this approach (Cohen & Spenciner, 1994; Cook, 2003).

Facilitating a Smooth Process

It will fall to the team leader to ensure that good functional outcomes are developed through the best possible communication among the team members. Team leaders should possess good communication skills and know how to listen. Take a minute to review the list of communication skills in Lesson 2 in the section on "Communicating with Families". Four of the most important communication skills are:

  • Listening skills - focusing on what the person is saying.
  • Reflection skills - Accurately and sensitively reflecting back a person's feelings.
  • Restating - Ability to briefly restate what was said.
  • Questioning skills - Ability to ask clarifying questions in an accepting manner.


Problems Arising in Embryonic and Fetal Development

Problems with development often have their origin in the developing embryo and fetus and often the embryo or fetus self-aborts due to a defect. However, there are survivals through the embryonic stage of 5 -10 weeks when most organ systems are developing and these surviving embryos and then fetuses are born with malformations such as cardiac lesions.

There are fetal conditions that affect subsequent growth. Some of these conditions include infants who:

  • are small for gestational age or low birth weight
  • have genetic conditions with growth problems as a characteristic of a syndrome
  • have infections from teratogens, foreign substances that can cause malformations in the developing embryo or fetus or can affect growth and development

As discussed in Module 1 of the ITDS series, risk factors during pregnancy can affect the outcome of an infant. During pregnancy, the placenta functions as the primary funnel of nutrients to the fetus. Nutrients actively pass from mother to fetus as the metabolic system of the mother regulates the nutrition for the fetus. Thus, a mother's nutritional status is very important to the health and well being of the baby. The growth issues become more obvious as the fetus grows.

Toxemia or pre-eclampsia and pregnancy induced hypertension can produce vascular changes in the placenta which can result in starving the fetus of adequate nutrients and can produce a newborn that is small for gestational age (SGA). Babies who are small for gestational age are at risk for growth, developmental, and behavioral problems. They are more at risk than infants who are appropriate for gestational age (AGA) to develop hypertension and diabetes as adults.

Influence of Teratogens

The Central Nervous System (CNS) is very susceptible to influences of teratogens such as alcohol, drugs, or environmental pesticides, etc. because the CNS takes much longer than most organs to develop. A teratogen may also be a medication or prescription drug taken by the mother during her pregnancy, especially in the first trimester. Also infections in the mother can pass to the developing fetus and cause problems. These include such things as rubella (German measles), rubeola (measles), varicella (chicken pox), toxoplasmosis, herpes simplex, cytomegalovirus (CMV), syphilis and human immunodefiency virus (HIV).

Amniotic Fluid Implications

Another factor that can influence the outcome for the infant includes the amount of amniotic fluid. Too much fluid (hydramnios or polyhydramnios) may be an indicator for problems such as neuromuscular diseases or obstruction of the gastrointestinal tract. Examples of the latter include imperforate anus, duodenal atresia, gastroschisis, omphalocele, or tracheo-esophageal fistula. Too little fluid (oligohydramnios) may also indicate the presence of problems for the growing fetus. This can be associated with an obstruction of the urinary tract, renal agenesis, immature lung development, and intrauterine growth retardation (IUGR).

Premature Infants

Premature infants contribute significantly to the morbidity and mortality rates discussed earlier in this lesson. Additionally, premature infants and the role of the ITDS were introduced in Module 1 of the ITDS series. The ITDS may be on the team for families who have premature infants. It is important that the ITDS understand terminology related to prematurity when reading reports or participating in team discussions.

In review, the preterm or premature infant is an infant who is born before the 37th week of gestation usually weighing less that 2,500 grams (5 ½ pounds). If an infant is born at 37 weeks or more and weighs less than the 2,500 grams, the infant is said to be small for gestational age. In addition, any infant with birth weight less than 2,500 grams, no matter what the gestational age, is considered low birth weight.

Technology such as incubators, mechanical ventilators, advanced laboratory procedures, antibiotics, and surfactant (to help the premature infant's lungs work better) make it possible to save smaller babies born at younger gestational ages. However, with more infants surviving, the issues of morbidity or the problems related to prematurity have increased.

Neurological Correction for Premature Infants

The ITDS must be aware of a very important concept when working with premature babies especially up to the age of two years. This is the concept of neurological correction. The age of the child until the chronological age of two years is adjusted to represent the time that would have been spent in utero rather than the actual age of the child. This is referred to as the adjusted age.

The concept of neurological correction is an important consideration when assessing the development of a premature infant. Professionals who administer developmental tests need to calculate the chronological, as well as the adjusted age, for a premature infant until the infant is two years of age. This adjusted age should be used when calculating the scores on most developmental evaluation/assessment protocols.

Why is it important to understand adjusted age?

A general rule of thumb is that most premature infants are kept in the hospital until they reach a weight of about five pounds or until they reach the term age when they would have been delivered. This is of course providing that the presence of a severe medical condition does not delay the transition to the home.

What family stressors should the ITDS be aware of that are inherent in the NICU experience?

An excellent resource on Premature Infants is available to help the ITDS gain insight on how families feel about and cope with the NICU experience and the transition home. This material was created specifically for parents of premature infants and healthcare providers.

Premature Infant Appearance

Premature infants look different than term infants. Generally, most premature infants appear floppy or have lower tone even when they have brain injury that may increase their risk for cerebral palsy and hypertonicity at a later age. Premature infants generally have increased joint mobility as well as low muscle tone. Both factors improve with more advanced gestational age. Other characteristics of the newly born premature infant include:

  • the premature infant will lie in an extended position whereas the term infant will lie in a semi-flexed position.
  • premature infants have more fine body hair called lanugo.
  • their skin is smooth with an absence of creases.
  • their ear cartilage and breast tissue is not well developed when compared to a term infant.
  • premature infants appear passive, and do not have good behavioral state control and are easily overstressed by aversive stimuli because of the immaturity of their nervous system.

Other Health Issues Related to Prematurity

Other health issues of prematurity include a decreased production of surfactant, immature nervous system, inadequate kidney function, immature gastrointestinal tract, immunologic problems, osteopenia of prematurity, and ophthalmologic problems. The decreased surfactant can lead to respiratory distress syndrome (RDS). The immature nervous system puts the infant at risk for:

  • intra-ventricular hemorrhage (IVH),
  • periventricular leukomalacia (PVL), and
  • hydrocephalus.

Inadequate kidney function may lead to acidosis and poor weight gain. Problems of the gastrointestinal system may result in feeding intolerance, necrotizing enterocolitis (NEC), and gastroesophageal reflux (GER), which may persist after the infant is discharged home. The signs of GER include:

  • a refusal of oral feeding
  • apnea (period of non-breathing)
  • arching of the back

Premature infants also have very immature immunological systems and therefore are at an increased risk for infection. This can lead to poor neurodevelopmental outcomes.

The premature infant is at risk for osteopenia of prematurity. Osteopenia of prematurity is caused by not being able to supply the premature baby with an adequate amount of calcium and phosphorous so the body can make new bone. This can result temporarily in brittle bones that are prone to being easily broken.

The premature infant is at high risk for ophthalmologic problems. Because of the immaturity of the blood vessels in the retina and their exposure to oxygen, they are prone to retinopathy of prematurity (ROP) and may suffer vision loss. Other problems that may occur during their hospitalization include the same physiological problems that occur in term infants such as:

  • anemia
  • hyperbilirubinemia
  • hypocalcemia
  • hypo and hyperglycemia
  • hypothermia

Health Issues Related to Developmental Disabilities

A developmental disability is defined as a chronic disability that results in a physical and a mental impairment. In contrast, a developmental delay is a lag in one of the developmental areas. A developmental delay may not result in a disability especially if the delay is due to environmental circumstances that are amenable to intervention. A chronic or substantiated developmental disability is usually observed during infancy or early childhood and usually continues throughout the life of an individual. Individuals who have a chronic developmental disability are in need of special supports and services from diverse specialists and interventionists because of functional limitations in several domains.

Infants and toddlers with developmental disabilities are often much more susceptible to health problems due to the limitations in their development. For example, a young child who has restricted physical movement cannot cough and clear his/her lungs as easily as a child who does not have this limitation. A common cold that a typical child can easily manage may represent an issue or catastrophe for this child with decreased mobility. Examples of common developmental disabilities that result in increased risks to physical health include cerebral palsy, Down syndrome, and spina bifida.

It is important for the ITDS to understand the difference between an established condition or disability that is a lifelong condition and a developmental delay that with intervention can show improvement.

Eligibility Determination

Some infants are diagnosed in the neonatal period with a condition or impairment. Other infants and toddlers receive a diagnosis after a thorough examination by health professionals.

Children with established conditions that have been diagnosed by a medical doctor or in the case of attachment disorders by a psychologist or psychiatrist are automatically eligible for Part C services. An eligibility evaluation by the Early Steps team is not necessary, only an assessment to plan interventions is required. On the other hand, if there is not an established condition, the child must be evaluated to see if there is a developmental delay.

The eligibility criteria for Part C is that a child has a score of 1½ standard deviations below the mean on a norm-referenced test in one area of development. If one of the State approved norm-referenced instruments cannot be administered, the child must be made eligible using a criterion referenced instrument and the eligibility score would need to document a 25 % delay in at least one area of development.

State Approved Instruments

The State approved instruments for screening are:

  • Ages & Stages Questionnaires
  • Early Learning Accomplishment Profile
  • Birth to Three Screener

The State approved instruments used for eligibility evaluation are norm- referenced and include:

  • Battelle Developmental Inventory II (BDI-2) - both norm and criterion-referenced
  • Developmental Assessment of Young Children (DAYC)
  • Birth to Three System

Note: A criterion-referenced test can be used as a substitute for eligibility determination when the norm-referenced instruments are deemed inappropriate by the team. For example, a child may have a developmental condition that was not included in the normative sample for the standardization of the test. The team may then decide that if the child were assessed using the norm-referenced test, he/she would be compared to a normative group that was not representative of a child with this condition and the criterion referenced test would be preferred.

The State approved instruments for conducting assessments for intervention planning are criterion-referenced instruments including:

  • Hawaii Early Learning Profile (HELP)
  • Early Learning Accomplishment Profile (E-LAP)
  • Assessment, Evaluation and Programming System (AEPS)
  • Battelle Developmental Inventory II (BDI-2)

Other instruments used by specific disciplines to more accurately capture the diagnosis and plan the intervention strategies are needed when a child has multiple problems. Sometimes evaluation and assessment instruments must be used that are specific to the suspected problems for the individual infant or toddler. As examples, specific instruments may be needed for infants and toddlers who have hearing or visual impairments or when only a delay in communication is the concern.

ITDS Role in Testing

The ITDS becomes a member of the team when the ITDS' disciplinary expertise, education, and experience are suited to meet the concerns expressed by the parents or caregivers for their child during First Contacts. If the ITDS does not have specific expertise in the area of concern, other professionals who provide the intervention for specific populations should be consulted to participate with the team in the evaluation, assessment for intervention planning, and for the interventions. The ITDS must perform within their accepted scope of practice (a set of knowledge and skills required for the profession) identified by demonstration of the achievement of competencies approved by the Early Steps State Office. Please refer to the service delivery model for Early Steps.

Infant Morbidity and Mortality

Major indicators of overall health in a population are the rates of infant mortality and morbidity. The rates of mortality and morbidity are measures that are gathered and published as vital statistics. The American Academy of Pediatrics has published these statistics in children since the 1950's. Health goals are often set based on statistics related to these two indicators of children's well being or the lack thereof. Healthy People 2010 is the most recent health initiative that lists objectives for health planning and goals. A major goal of this initiative is to reduce mortality and morbidity in infants.

US Infant mortality rates published by the American Academy of Pediatrics (2003) show a decreasing trend in mortality:

Year IMR Comments
1900 150/1000 Infections, poor hygiene
1914 100/1000 (10 %) Pre-antibiotics
1936 57.1/1000 Some antibiotics
1950 29.2/1000 New technology, more premature infants living, increased morbidity
1957 26.1/1000 Widespread use of penicillin, sulfa, streptomycin
1980 12.6/1000 Prematurity the leading cause of death at 50 - 60% Congenital anomalies at 20 - 25% Stillbirths at 10%
1990 9.2/1000 Teen birth rate dropping for the 15 - 19 age group
1995 - present 6.9/1000 Disparity of different populations Teen birth rate dropping for the 15 - 19 age group

*Infant Mortality Rate (IMR) is the number of deaths in comparison to live births.

Common Causes of Infant Morbidity and Mortality

Examples of morbidity include respiratory conditions, impairments of speech or intelligence, nervous or mental health conditions, nonparalytic orthopedic conditions, diseases of the eyes or ears, and congenital anomalies. These conditions put an infant or toddler at higher risk for chronic disabilities or even death. The following are common causes of morbidity and mortality.

Congenital Anomalies are conditions that are present at birth that manifest in a structural defect. These include those that are visible such as a cleft lip or imperforate anus and those that are not visible to the naked eye such as the absence of the corpus callosum of the brain.

Neonatal Infections include bacterial sepsis, and viral infections in newborns. These infections affect infant morbidity and mortality. They have continued to be one of the leading causes of infant mortality for the last twenty years. Antibiotics may sometimes treat bacterial infections, but the immature immune status of the neonate makes it very susceptible to overwhelming infection.

  • Bacterial sepsis is a significant cause of morbidity. The early onset of a group B strep infection causes pneumonia, sepsis, meningitis, persistent pulmonary hypertension of the newborn, and hypoperfusion and can result in organ damage and death. The same issues can occur with other bacterial infections and cause similar sequelae in older children.
  • Viral infections can infect the mother in any trimester and cause a variety of sequelae to the newborn. Examples include rubella, measles (rubeola), varicella, herpes simplex, cytomegalovirus, and parvoviruses. Though there are characteristic findings for each virus, all incidences in the first trimester can cause miscarriage; all in the second trimester can cause growth issues and many cause sensory organ damage. Some infants when infected during the birth process to cytomegalovirus (CMV) may not show immediate problems, but may develop problems such as progressive hearing loss. Their hearing loss may be manifested over several years making detection and follow-up crucial.
  • Neonatal exposure to sexually transmitted diseases may cause problems for the newborn. Examples include syphilis, chlamydia, gonorrhea, and human immunodeficiency virus (HIV). All may result in significant morbidity and mortality.
  • Diseases due to parasites, though more common in children from third world countries, contribute slightly to the morbidity and mortality in infants. The major exception of a parasite in the United States that can have a devastating affect on the infant is toxoplasmosis. The pregnant woman may become infected primarily through touching anything that has come into contact with contaminated cat feces. Pregnant women are advised NOT to change litter boxes. However, they may reduce the risk of infection with good hand washing and wearing gloves if they do change litter boxes, dig in garden soil or handle raw meat

Low Birth Weight (LBW), <2500 grams, and especially very low birth weight (VLBW), <1500 grams, contribute to the causes of morbidity and mortality. Although the gestational age of viability and survival has dropped over the years, technology does not ensure complete well-being. Premature births, particularly for infants of very young gestational age, still contribute to significant morbidity.

Sudden Infant Death Syndrome (SIDS) is a cause of death for both neonates (first 30 days of life) and also for infants. The cause is unknown, but there are measures such as putting babies to sleep on their back that have been shown to reduce the incidence.

Substance Exposed Newborns (SEN) are also at higher risk for morbidity and mortality. A mother's use of tobacco, ethanol (alcohol), cocaine, or other illegal drug can have a significant affect on the baby because they harm the integrity of the placenta. The infant may suffer withdrawal, be smaller for gestational age, and have less fat reserves. They may be at risk for hypertension, diabetes, and later learning and behavioral problems. There are also prescription drugs that contribute to the overall numbers of infant mortality or morbidity and can negatively affect the baby.

Metabolic Abnormalities contribute to the IMR. For example, hyperbilirubinemia (high bilirubin levels) if untreated may result in a condition known as kernicterus (bilirubin in the brain) and can lead to seizures, intracranial hemorrhage, death, and if the infant survives, can cause mental retardation. While there are treatments for high bilirubin levels there are still casualties. Children who have hyperbilirubinemia are also at risk for hearing loss. Another common metabolic condition seen in the NICU is hypoglycemia (low blood sugar) which can lead to seizures and brain injury if severe or prolonged.

Seizures are a sign of brain dysfunction and have a variety of causes including hypoglycemia (low blood sugar), hyponatremia (low sodium concentration), hypocalcemia (low calcium), hyperbilirubinemia, hypoxic-ischemic encephalopathy (HIE), infections (meningitis and encephalitis are examples of inflammation of the membrane coverings surrounding the brain), trauma, malformations, and intracranial hemorrhage. Seizures in the newborn period are often not full-blown and their symptoms may be subtle. However, the seizures can be generalized as well as partially complex, or focal in distribution.

Injuries from falls, vehicle crashes and pedestrian accidents account for approximately 3.3% of deaths in young children, including toddlers. Drowning is also a significant safety factor for infants and toddlers. The ITDS should be alert to preventive measures such as never leaving a child unattended at bath time or around open water buckets, open toilet bowls or bodies of water.

Effect of Health Problems on Families

The ITDS should have an acute awareness of the societal changes in the demographics of families. He/she must be very respectful of the differences in cultural as well as individual responses to challenging situations. A family can be defined as a single parent, either by choice or by death or divorce, a blended family, or may consist of multigenerational members. Children now are often raised by parents with alternate lifestyles, foster or adoptive parents, grandparents or other kin, or by non-relatives.

For many families a major impact of having an infant or toddler with a developmental disorder or chronic health condition is considered the loss of the dream. A typically developing robust child may not be a reality. When this occurs, each family member must cope and adjust in his/her own time and way.

The perceptions of the family can be influenced by all of the following: the visibility of the condition, the functional limitations that are expected for the child, the presence or absence of cognitive impairment, the presence of pain and suffering for the child, and the expectations that family members had for the child.

Stresses on Mothers

In many families the burden of care for a child with special needs and chronic health problems falls to the mother. This can include responsibility for special diets, arranging transportation, medical care, adaptive equipment, medical financing, baby sitters, and loss of time at a paying job. Additionally, the presence of functional and cognitive limitations in a child are linked to increased stress in mothers.

Chronic Sorrow

Some family members may experience chronic sorrow. Olshansky (1962) first identified the notion of chronic sorrow in families who have children with special needs. Chronic sorrow does not imply that families who have children with special needs are not normal and do not enjoy typical family activities. Rather, it refers to the fact that incidences such as visits to specialists for a diagnosis or planning meetings for services may bring up earlier grief reactions.

Searching for Information

Often families will search extensively for information about their child's condition and sometimes may neglect the emotional needs of the child's siblings or others in the family. The number of children who do not have an actual diagnosis of a chronic disability is estimated to be around 30%. This is very frustrating to families who want to know the cause, as well as the possible treatments. Assisting families to find the appropriate specialist to establish a diagnosis is important. Practitioners who label a child without first establishing causation may contribute to the stress that families feel. It should be noted, however, that for a small percent of children, a definitive diagnosis and causation will never be made.

Financial Pressures

The family is also dealing with the pressures of an added economic burden because of the cost of the health care, particularly if the child needs the services of multiple specialists. This includes the financial burden and expenses that are not usually covered by most third party payers.

ITDS Awareness

The ITDS should be attuned to adjustment concerns and use reflective listening strategies to assist families going through a difficult time without judging what sometimes may seem like irrational mood swings. For example, sometimes a parent may lash out at a provider yet their anger is not directed at the person but rather they are displaying anger because they feel a helplessness to cure the child or better a situation. The ITDS must be alert to opportunities when positive feedback on the parents' competence can be provided to enhance the capacity of the parents to feel a sense of competence in their care giving skills. Families who feel competent adjust much more readily to parenting a child with special needs.

Not all families welcome extensive interventions as some view visits and strategies as an intrusion. How does the team make adjustments that show respect for a family who expresses this concern?

What other special circumstances could the ITDS encounter where adjustments in location, duration, and frequency or types of support vary?

Financial Constraints and Resources

The decrease in infant mortality rates has resulted in an increased morbidity rate that is now impacting the financial picture of the health care industry. Many young children have some type of chronic illness. Approximately ten percent (10%) are classified as disabled. This has created financial concerns and constraints for how to provide care within budgetary guidelines. Resources have needed to adjust and plan accordingly.

Managed Care and Other Insurance

The state agency for children with special health care needs is Children's Medical Services (CMS) which is a division of the Department of Health. CMS is a managed care organization that provides care for children birth – 21 years with chronic medical conditions who meet financial criteria. Through CMS, care is provided for children with Medicaid and others under a share of cost arrangement. Managed Care Organizations, such as CMS, became popular around the 1980's. They limit the coverage of medical expenses by limiting the services they will cover. The rationale is cost containment and efficiency while also maintaining quality of care.

Agency for Persons with Disabilities and Other Resources

Even though a child under age 3 will be put on a waiting list due to the large numbers of families in need of support, the information should still be provided. Additionally, the ITDS can provide the family with information about Medicaid and also the Supplemental Security Income (SSI) program for children with disabilities who meet financial eligibility. Information about these programs is available by visiting the appropriate website at the end of this lesson.

Why is it important for the ITDS to share information about the Agency for Persons with Disabilities?

What other financial resources can the ITDS share with families who have children with developmental disabilities?

Medical Ethics / Confidentiality

Medical ethics is a system for making decisions used by medical practitioners. Ethics include weighing factors logically and considering morals and values. Underlying medical ethics is the premise that the physician or practitioner has a duty to 'first, do no harm', and show respect for persons. Principles in medical ethics include:

  • a belief that people are autonomous and can practice self-determination
  • a responsibility to tell the truth
  • a duty to keep one's word
  • a sense of justice and fairness
  • consideration of issues of privacy and confidentiality
  • strategies for dealing with conflict and disagreements

When medical ethics is applied to children, the physician or practitioner asks questions such as who needs to make the decisions for the child. Often the decision maker is the parent, but sometimes it is a care provider or a surrogate assigned by the state if the child is in special foster care.

It is important for the ITDS to recognize the medical home of the child and to work in concert with this primary provider of health care. The ITDS should not give advice to the family that will confuse or jeopardize care. Whenever possible the primary medical provider should be included as an active participant and consultant on the IFSP team.

All persons who work in health related fields are responsible for maintaining confidentiality. The privacy laws that pertain to the protection of educational and health records bind the ITDS. This includes the Family Right to Privacy Act (FERPA) and Health Insurance Portability and Accountability Act (HIPAA). Examples of privacy protections include that all records of the ITDS should be maintained in a locked file. No personally identifiable information for the child and family should be transmitted by electronic means. Additionally, the ITDS should not discuss a child or family without the express written permission of the family and only for specific purposes that have been identified and agreed upon by the family. This requirement is important when planning consultation visits and staffing sessions.



The overall prevalence of nutritional disorders for children eighteen years of age or less in America includes obesity at a rate of 25% and undernourishment at a rate of 10%. Of particular note is that 70% of infants and toddlers who have been diagnosed with special health care needs demonstrate at least one of the risk factors for a nutritional disorder and 40% have a diagnosed nutritional disorder.

When the ITDS, as part of the early intervention team, encounters a child who appears undernourished or obese, the ITDS must first determine whether the child has a primary medical provider. If there is no primary medical provider, the family should be connected to a primary medical home as well as a pediatric nutritionist as indicated to develop a collaborative nutritional plan of care that includes ongoing follow-up with medical providers.


Infants who are undernourished follow a growth trajectory that shows decreased linear growth and an increased susceptibility to infections. Sometimes it is hard to determine if the undernourishment is due to an organic condition or if it is related to developmental and behavioral delays associated with poverty or neglect.

Infants who are undernourished demonstrate slightly decreased differences in cognition and in motor development. If the undernourishment is associated with iron deficiency anemia, then the child becomes significantly at risk for possible cognitive delays. If an adequate nutritional source can be established and if the relationship between the infant and caregiver can be optimized then often the undernourished infant can thrive. The ITDS should be alert to this important relationship and be prepared with strategies to positively enhance the feeding time environment.

Undernourishment is also seen when calories are used faster than for typically developing children of the same age. Being active as a toddler is not a cause of weight loss because this is typical behavior at this age. Some causes that may be associated with excess utilization of nutrients include:

  • recurrent infections
  • chronic respiratory insufficiency
  • congenital or acquired heart disease
  • malignancy
  • toxins such as lead and drugs
  • endocrinology disorders such as hyperthyroidism

Low Birth Weight and Nutritional Status

Low birth weight, especially at full term, as a single factor may not be indicative of nutritional risk. A smaller maternal size has been related to smaller infants. This does not necessarily mean that the infant has low birth weight. The infant must be assessed in the context of cultural factors or accompanying growth and nutritional risk factors. The smaller size of the infant may only be indicative of the genetic endowment. The primary medical provider will monitor the growth of the infant closely to ensure that the length for weight index documents proper growth. Infants born with low or very low birth weight due to prematurity or other pre- or post-natal conditions must have their nutritional needs assessed in context with their specific medical needs.


Obesity or the condition of being overweight is associated with an increased risk of cardiovascular concerns, diabetes, decreased mobility, and social implications as the child grows. There is also an associated challenge for the caregivers if the child is non-ambulatory past the age in which typical peers would be walking. As mentioned earlier, the child must be in the care of a primary medical provider and also with a pediatric nutritionist if indicated.

There are certain syndromes that have associated risks for obesity and require monitoring often by a developmental pediatrician and a pediatric nutritionist. Two of these are Down syndrome and Prader-Willi syndrome. These will be discussed in this lesson in a section relating to genetic and endocrine disorders.

Nutritional Risk and Assessment

The presence of any indicators of nutritional risk warrants a nutritional assessment by the primary medical provider. The primary medical provider generally monitors nutrition as part of routine care. This is even more important for the child with chronic health conditions. The pediatrician or primary medical provider may refer a child with chronic feeding issues or several nutritional risks to a pediatric nutritionist. Indicators of nutritional risk include altered growth, altered appetite, and medications that alter the appetite or interfere with the absorption or excretion of nutrients. Other risk factors related to nutrition are an increase or decrease in energy needs, metabolic disorders, impaired mobility, decreased cognitive functioning and increased cardio-respiratory or physical effort. Another risk factor is the documentation of poor feeding skills by either the caregiver or child.

While visiting the home or child care site, the ITDS should be alert to lead poisoning risks such as peeling paint in older homes or play areas consisting primarily of loose dirt without grass or other covering. Screening for lead exposure should be part of the routine medical care for all infants and toddlers. Preventive steps include frequent hand and toy washing and provision of snacks high in calcium, iron and vitamin C as children with empty stomachs or poor diet absorb more lead. High blood lead levels have been associated with learning disabilities, anemia, hearing loss and behavioral problems.

Medical and Feeding Histories

Nutrition is assessed by monitoring the child's growth rate over time and by an analysis of the medical and feeding histories. The medical history will include illnesses and medications. The feeding history includes food content and caloric intake and excretory output, developmental feeding skills, daily routines related to feeding, and the environment where feeding occurs. Not only is history important to establish a baseline, but the history also can provide clues to causes of nutritional and/or feeding difficulties.

When taking a feeding history it is important to ask:

  1. How much?
  2. How often?
  3. What types?
  4. Feeding routines?
  5. Where does feeding occur?
  6. Who is the primary feeder?
  7. Are there difficulties with feeding such as choking, gagging, coughing, vomiting, or ruminating with certain foods and not with others?
  8. Does the child refuse certain foods or is the child overly selective with great restriction of food types?
  9. Does the child refuse foods of certain textures?
  10. How long and when did feeding issues begin or occur?

Physical Exams and Laboratory Tests

The physical exam and any laboratory tests follow the history. The physical exam includes growth parameters such as length or height and weight. The developmental history and assessment are as important as the physical exam and history when assessing for nutritional risk. The presence of developmental disability or delay impacts what the child may consume. Delays in cognition will usually result in delays in adaptive skills such as finger and spoon feeding and moving from liquids to solids.

Social and Caregiver History

After obtaining a nutritional history and performing a physical exam of the infant or toddler, the primary medical provider will take a social and caregiver history to ascertain if there are maladaptive beliefs about food. The physician is also informally assessing the caregivers' ability to understand a nutritional plan and medical advice. The physician may be considering questions such as:

  • Are there factors of cognitive ability related to the caregivers?
  • Are there financial strains in the home?
  • Is there support for the primary caregiver (usually the mother but not always)?
  • Is there history of substance abuse or is there a physical or mental condition of the caregiver that could impact the nutritional well being of the child?

The physician also needs to ascertain if there are genetic patterns that are common to the family such as short stature. Gathering this information would help the physician determine whether this could be a genetic indicator or if malnourishment is a concern. The ITDS may also explore and discuss cultural beliefs in a sensitive manner to determine if these values are compatible to the nutritional plan of care.

Physical Signs and Anthropometric Assessment

Assessment of growth parameters such as weight, height, and the relationship of weight for height and monitoring for the rate of growth over time by plotting gains and/or losses on a growth chart is the most common physical evidence used in monitoring nutrition and growth. Additionally, the primary medical provider monitors head circumference and checks to see if there is enough subcutaneous fat under the skin to indicate nourishment status. Cutaneous factors such as thin dry hair, dry skin, oral lesions, or nail beds that are discolored, thin, or ragged can also be an indicator of nutritional problems. The importance of the head circumference is that the size of the head is often indicative of brain growth.

Accurate measurement of growth is extremely important. Infants and toddlers who have suspected growth risks or nutritional problems need to be followed closely. They should be weighed nude as clothes and shoes can contribute up to ½ pound for the infant and up to 2 pounds to the weight of an older child. A stadiometer should be used for checking the length and height. Plotting on the appropriate growth chart is very important. Length measured with the child lying down is plotted on a 0 – 3-year-old growth chart and height measured with the child standing flat is plotted on the 2 – 20 year old growth chart. The weight for height called the body mass index (BMI) should also be plotted as it provides a rough estimate of body bulk that includes muscles, fat, and bones. The nutritionist will routinely measure the triceps skin-fold for fat content and the mid-arm muscles to assess for muscle mass.

Behaviorally Based Feeding Disorders

There are four general classifications of feeding disorders: neuro-muscular, behavioral, sensory, and mixed. Neuro-muscular disorders are those that have muscular or anatomic basis. Behavioral disorders are those that are more psychosocial or interactive in nature. Sensory disorders are those that are a response to specific tastes, textures or smells. Other disorders are considered mixed because they have aspects of more than one of the classifications.

There are several sub-classifications of behaviorally based feeding disorders provided by Chatoor (2002). The classification is based on the behavioral characteristics and the age at onset.

Condition Age at Onset Characteristics Management
Disorder of State Regulation Newborn period Infant has difficulty reaching and maintaining a state of calm alertness necessary for healthy feeding Modulation of stimulation
Alternative feeding route
Support and counseling for the parents/caregivers
Disorder of Reciprocity Early infancy Lack of social reciprocity: visual engagement, smiling, babbling during feeding
Failure to grow
Multidisciplinary team approach to include physician
Home visits
Parent training and support
Hospitalization as needed
Infantile Anorexia Around time of the transition from liquids to solids and to self feeding with fingers and spoon Refusal to eat adequate foods for at least one month in duration
Does not communicate hunger
No interest in food but explores environment and interacts with caregivers at times other than mealtimes
Not related to trauma or illness
Assess infant's temperament
Assess for an insecure attachment and parent vulnerability
Use a behavioral specialist to develop a behavioral plan that includes structured mealtime routines and to counsel the parents
Food Aversions Early toddler or preschool age Refusal to eat specific foods with certain tastes, smells, textures, or appearances
Occurs during the introduction of a new food
Eats better when given preferred food
May have nutritional deficiency and oral motor delay
Prevention when possible by teaching parents about the early introduction of a variety of tastes and textures before the child reaches toddler age
Teaching caregivers to model the practice of eating healthy foods
Instruct caregivers to provide a neutral atmosphere for mealtimes
Nutritional supplements and vitamins
Disorder associated With Chronic Medical Condition Occurs when disorder is manifest from newborn period and thereafter Readily initiates feeding but shows distress over the course of feeding and refuses
Medical treatment can improve but not eliminate the problem
ails to gain weight or loses weight
Team approach
Behavioral management specialist to assist in planning routines and calm atmosphere and to modulate the feeding schedule
Oral motor feeding specialist if oral motor dysfunction or aspiration
Post Traumatic Feeding Disorder May occur anytime as a result of a reaction to a traumatic event or anything that reminds the infant/child of the event May refuse food following a traumatic or related event such as the insertion of a naso-gastric tube, an episode of choking, severe vomiting or aspiration
May refuse food from one utensil, but accept it from another
May accept the bottle, but nothing else
May accept offending utensil if sleepy
Intense resistance if reminded of the traumatic event
Behavioral management specialist to use extinction behavioral therapy
May require supplements to the feeding and may require use of gastrostomy tube feedings until proper nutrition can be managed

Behaviorally based feeding disorders are considered in the context of the antecedents or past history of behavior. The medical provider and the team, including the ITDS and parents, need to observe what is happening at the time of feeding or mealtimes in order to plan appropriate intervention strategies.


A swallowing disorder that may cause nutritional risk is called dysphagia. Dysphagia may occur at different stages in the swallowing process. There are three stages to a swallow:

  • Oral - the oral phase includes sucking, chewing and moving food or liquid into the throat
  • Pharyngeal - the trigger of the swallow reflex occurs during the pharyngeal phase and also includes the compression of food down the throat, while closing off the airway to prevent aspiration or choking
  • Esophageal phase - the esophageal stage begins with the upper esophageal sphincter (UES) opening allowing the food to travel down the esophagus. As the food travels down the esophagus, the lower esophageal sphincter (LES) relaxes allowing the food to enter the stomach.

Pediatric dysphagia includes a wide range of etiologies. These include gastroesophageal reflux disease (GERD) and respiratory disorders. In addition, intracranial hemorrhage, traumatic brain injury, prematurity, and structural abnormalities such as cleft palates can lead to dysphagia and subsequent nutritional concerns.

Respiration Patterns with Feeding Concerns

In a clinical evaluation of feeding disorders, respiration patterns are also observed as a potential etiology of feeding difficulties. Continuous nutritive sucking can slow the breathing of healthy infants, but is well tolerated. In infants with respiratory compromise, swallow apnea can cause the infant to become bradycardic and hypoxemic. Those children with upper airway obstruction or other pulmonary complications may require a tracheostomy. Unfortunately, the tracheostomy may intensify the dysphagia due to limited laryngeal elevation required during the pharyngeal phase of a swallow.

Alternative Methods of Food Intake

The physician for a child who experiences chronic dysphagia may advise the family about alterative methods of nutritional intake for the child. Primary support for short-term nutritional maintenance includes orogastric and nasogastic tubes. Nasoduodenal and nasojejunal tubes are usually used when reflux is present or in long-term feeding problems. Supplemental support can be given through the implementation of a gastrostomy tube. One type of gastrostomy tube is called a percutaneous endoscopic gastrostomy (PEG). A PEG tube is inserted into the stomach allowing the child to be freed of any invasion through the mouth and nose. Oral feeding can be administered with a PEG tube. The various types of feeding tubes are defined below:

  • orogastric tube is a feeding tube that is inserted into the mouth and through the pharynx, esophagus and into the stomach. This is usually a short term, temporary measure.
  • nasogastric tube is a feeding tube that is inserted through one side of the nose into the pharynx, through the esophagus and into the stomach.
  • nasoduodenal tube is a feeding tube inserted into the nasal cavity, through the pharynx, esophagus, and stomach and into the duodenum of the small intestine.
  • nasojejunal tube is a feeding tube that is inserted into the nasal cavity, through the pharynx, esophagus, and stomach and into the jejunum of the small intestine.
  • percutaneous endoscopic gastrostomy (PEG) is a feeding tube that is inserted through the stomach using a simplified surgical procedure. This is sometimes simply referred to as a gastrostomy.
  • gastrostomy is the opening in the stomach created surgically for the purpose of feeding. This is usually a permanent opening.

Swallowing Evaluation

There are various techniques available to medical professionals for evaluating swallowing. Each is comprised of advantages and disadvantages. A selection of an evaluation tool is usually customized to the patient. A fiberoptic endoscopic evaluation of swallowing (FEES) provides detailed information about pharyngeal and laryngeal structures and does not expose the child to radiation. A disadvantage is that it does not assess the oral and esophageal stages of swallowing. FEES is administered through a flexible nasoendoscope which is passed through the nose into the phayrnx, allowing visualization of the structures important for swallowing.

Videofluoroscopic swallow study (VFSS) is another way of assessing swallowing. The child is given different consistencies, easiest to hardest for the child to swallow, and they are mixed with either liquid, paste or powder barium. The VFSS assesses all three stages of swallowing and is recorded onto a videotape or still x-rays. Radiation exposure, although minimal, and lack of portability of the equipment are disadvantages of a VFSS.

Feeding Strategies

A feeding specialist or a speech-language pathologist with specific additional training and experience can implement treatment strategies. As determined by the team, an occupational therapist as a consultant or direct therapist may address sensory issues relating to foods.

Therapy can be divided into teaching compensatory strategies and/or facilitative strategies. Compensatory strategies can include organizing the infant for feeding, altering the environment, establishing optimum positions, changing feeding utensils and alternating food consistencies. Facilitative strategies can include establishing a pace and rhythm to feeding, reducing oral aversions, and intervention for behavioral based feeding disorders. The professional will guide and counsel the caregiver to optimize the child's nutritional intake in the home.

Inadequate Caloric Intake and Excessive Losses

Conditions associated with nutritional disorders often interfere with the intake of adequate calories to maintain a healthy body. Poor caloric intake can be caused by a variety of factors. These include poor appetite, chaotic daily routines and lack of structure in the home. A nutritional disorder can change the metabolic process for digesting carbohydrates, fats or proteins.

Caloric loss may be associated with reflux, vomiting, diarrhea or constipation that accompanies a disease condition. The body needs a certain amount of calories to survive and maintain function. The metabolism or processing of food (nutrients) produces energy that is then expended on cell growth and maintenance.

The metabolism of food creates energy and then the body expends energy. A balance between what goes in and what is expended must be maintained. Simply put, in order to grow, more calories must go in than are expended.

Causes of Poor Caloric Intake

Poor caloric intake can be caused by a variety of factors including poor appetite caused by poor daily routines and lack of structure in the home or stresses that have created anxiety. Poor caloric intake can be associated with central nervous system (CNS) disorders and also with chronic or recurrent infections. Medications such as decongestants can also suppress the appetite.

Impairment of oromotor or swallow functions can impede adequate intake and are referred to as neuro-muscular. The cause may be organic with muscle involvement for many infants and toddlers who have cerebral palsy. The child may have low muscle tone and also the inability to chew properly as is often seen in infants with Down syndrome. There may be cranio-facial anomalies that prevent intake such as with cleft lip or palate and surgical repairs. In these cases, other methods to ensure nutrition must be explored that may include oral muscle strengthening exercises. Alternative routes for nutrition are sometimes necessary such as gastrostomy tube feeding, as defined earlier in this lesson. There also can be an inability to coordinate breathing and feeding which results in dyspnea (difficulty in breathing) and poor caloric intake. The need to address multiple issues may necessitate involvement from a variety of disciplines.

Food Insecurities

The issue related to food insecurities must be taken into account. A food insecurity is the lack of needed food to meet the body's nutritional needs. Food insecurities may be related to psychosocial issues including the lack of finances to support a healthy diet. The team for the family may include a social worker to help the family obtain the food that is needed. The ITDS should be aware of programs such as the Women, Infants, and Children (WIC) program that provide food supplements to low income mothers and children. WIC is a federally funded program that provides healthy foods, nutritional education and counseling, breastfeeding support and referrals to needed healthcare services.

Food insecurities related to behavior may not simply be the unavailability of food. It may also refer to inappropriate feeding techniques by the caregiver, insufficient volumes of the needed nutrients, inappropriate food for the age of the child, or the withholding of food by the caregiver that is considered to be a form of abuse or neglect.

Nutrition and Special Populations

The critical period of brain development is during pregnancy and the first few years of life. Malnutrition during embryonic and fetal growth and during infancy and the toddler years has an effect on the developmental outcomes for a lifetime. After birth the greatest rate of growth is during the first six months when an infant will double his/her birth weight. At one year of age a typically developing infant will triple his/her weight. There is a slowing of the growth rate somewhere around nine to fifteen months of age.

All babies should be gaining weight and growing during their first year. If they are not, then something is wrong and they must be checked and monitored. Contributing causes of problems during infancy include premature birth, the presence of congenital anomalies, cardiac or respiratory problems, and infections. However, vomiting and diarrhea are probably the leading causes of weight loss in an infant.


Vomiting may be associated with gastro-esophageal reflux, intolerance or sensitivity to certain foods, an intestinal tract obstruction such as pyloric stenosis (tightened stomach valve that does not allow the passage of food from the stomach into the small intestines) or malrotation of the bowel. Vomiting may also occur when there is pathology in the central nervous system such as when the intracranial pressure is increased. Vomiting may be caused from the intentional administration of certain drugs such as ipecac that will induce vomiting.


Diarrhea has many causes, the most common being the inability of the intestinal tract to absorb one or more of the necessary nutrients: proteins, fats, or carbohydrates. This condition is known as malabsorption and can result from food protein insensitivity or intolerance or other enzyme deficiency.

The ITDS should be alert to instances when the infant or toddler is not gaining weight or when the caregiver is reporting symptoms of diarrhea. Why is this important to the health of the child?

What awareness should the ITDS have who is providing services to infants and toddlers in child care facilities related to diarrhea?

Premature (pre-term) infants are infants who are born before 37 weeks of gestation. Those born prior to 32 weeks are more vulnerable to nutrition issues. Often pre-term infants have a lower mineral content in the bones which may lead to brittle bones and bone fractures. These infants are at a higher risk for anemia. Premature infants cannot take in as many nutrients as the full-term infant and most of the formulas are based on the daily needs of the full-term infant. Therefore pre-term infants may need special formulas or supplements in their formulas. Pre-term infants need to have "catch-up" time, usually 9 – 12 months after birth. "Catch-up" refers to the time needed to gain weight in excess of that expected for their gestational (adjusted) age. Pre-term infants who can catch-up on weight and growth show improved health and developmental outcomes. Some "catch-up" may occur up to the eighth year of age.

Premature infants need a high nutritional formula at least until they are about nine months old. A nutritionally rich diet, which may include a prescribed, specially enriched formula, or breastfeeding, perhaps with a physician prescribed supplement, is of vital importance during this first year of life. This is when the brain is growing rapidly and making the most neuronal connections.

Premature babies have their weight, length, and head circumference plotted on a growth chart for premature infants. The BMI should always be plotted to ensure growth in body, muscle, and fat. After 9 – 12 months a switch to a regular growth chart can be made if the infant is showing a BMI or weight for length of the tenth to twenty-fifth percentile for a typical infant.

How can an ITDS support young mothers who have premature infants to ensure that the nutritional needs of the infants are met?

Why is meeting appropriate nutritional needs particularly important for premature infants?

Feeding Environments for Premature Infants

Studies of premature babies have shown that they do better in a quiet, calm environment where lighting and noise levels are controlled. Even when they must take their feeding through a feeding tube, the infant may learn to self regulate its neurological state better if they are provided with a non-nutritive sucking experience such as with a pacifier during the feeding. Premature infants sometimes have to be fed with a tube inserted through the nose, a naso-gastric tube or a tube inserted through the mouth, an orogastric tube. In some cases a feeding tube must be inserted directly into the stomach through a surgical opening created in the abdomen. This is a g-tube or gastrostomy tube.

Weaning from Tube Feeding

There are several suggested interventions to wean a premature infant from gastrostomy tube feeding to oral feeding. They include:

  • Limit the number of caregivers who provide the feeding to the infant.
  • Minimize distractions at feeding time.
  • Attempt to normalize a feeding schedule with boluses provided after oral feeding has been attempted. A bolus is a small mass of food prepared for swallowing or for insertion into a feeding tube to ensure that an infant receives appropriate nutrients. It is important to note that solid food must be liquefied per a physician's instructions. Usually a bolus refers to a liquid such as formula or water that is given all at once, rather than via a feeding pump over time. The ITDS should not provide gastrostomy tube feeding unless appropriately instructed by the primary care physician.
  • Maintain gentle yet firm and consistent handling during feeding. Premature infants like a firm touch that is not tentative.
  • Reward the acceptance of food.
  • Ignore refusals of food.
  • Remember to use the adjusted age when determining when to start the baby on solid foods.

Immature Bowels in Premature Infants

Some premature infants have such immature bowels that they cannot digest food. Sometimes their bowels become necrotic (tissue or cell death) if fed much too soon, if an infection occurs, or if the bowel is malrotated. When necrosis occurs, the infant may require surgical removal of a large portion of the bowel. This is referred to as short gut syndrome. The infant survives with parenteral nutrition. If the infant has lost the ileocecal valve the result is decreased fluid and nutrient absorption and also bacterial overgrowth. The physician and nutritionist assist the infant in this situation by introducing oral nutrition when the infant's bowel is more mature. Oral nutrition helps to stimulate bowel growth and this increases absorption. Hydrolyzed proteins also help absorption. Carbohydrates are often reduced as they cause diarrhea that can result in even more malabsorption.

Chronic Lung Conditions

Chronic lung conditions are often seen in premature infants and in children with cystic fibrosis. Infants and toddlers with chronic lung conditions have problems with feeding. They may exhibit a poor suck, have fluid intolerance, and experience gastro-esophageal reflux. If they are on diuretics to reduce fluid in their lungs, they also are at risk for the loss of minerals and salts. Their breathing is labored and this increases their need of energy. They are also at an increased risk of aspiration, particularly if they have shortness of breath. They tend to retain carbon dioxide, and for this reason, carbohydrates should not be increased.

These infants and toddlers tend to exhibit poor growth and need frequent checks by their primary medical provider and often a respiratory specialist. These specialists will monitor their growth and nutritional intake while also monitoring their oxygen needs, the hemoglobin levels, and the levels of other minerals such as calcium and phosphorus. The physician will also be monitoring protein status and the electrolyte balance. Treatment of the gastroesophageal reflux might require medical intervention.

An infant or toddler with a chronic lung condition may fatigue easily. The main role of the ITDS, if involved on the team, is to encourage the caregivers to provide calm, unhurried feedings and monitor to ensure that the infant is allowed to rest if overtaxed. Over stimulation can actually cause the infant to regress in development and can increase health risks. There may be poor coordination between breathing, sucking and swallowing and this can result in aspiration. Feeding can become a very negative experience particularly during the transition from liquids to solids

Chronic Cardiac Conditions

Chronic cardiac conditions also result in feeding intolerance due to poor suck. There are increased energy needs due to increased respiratory effort. Anorexia or poor appetite and malabsorption of nutrients is common. Chronic cardiac conditions are associated with some genetic disorders including Down syndrome.

Cerebral Palsy

Cerebral Palsy is a disorder of movement and posture. The incidence of reduced cognition is also higher in children who have cerebral palsy, however, the two are not necessarily correlated. Nutritional issues may include feeding dysfunction with a poor suck and swallow and decreased motility of the intestinal tract. As with many of the other conditions, the risk of aspiration is greater, as is the risk of gastro-esophageal reflux. There is an associated delay in feeding skills and there are often food refusals that lead to inadequate intake of food.

Genetic Disorders

Genetic disorders and endocrine disorders are common causes of poor nutritional status. Genetic disorders associated with feeding issues include Fragile X syndrome, Down syndrome, Prader-Willi, and William's syndrome.

Fragile X

Fragile X is a genetic disorder that occurs in males and females. Males are usually more severely affected. Common characteristics include severe behavioral issues including autistic like behaviors. Associated nutritional issues include hypotonia or low muscle tone that can make feeding difficult. Vomiting may occur and there are often food refusals. There is associated mental retardation usually much more severe in males affected with the disorder than females.

Down Syndrome

The most common genetic syndrome is Down syndrome where there is a trisomy on chromosome 21.

Children with Down syndrome usually have lower metabolic rates. This means that they use fewer calories to perform the same activities as their typical peers and this can lead to weight gain and to obesity. Some children with Down syndrome have associated cardiac defects and may have increased respiratory infections. These medical issues delay feeding skills, reduce appetite, and in infancy can result in a failure to gain weight. However, as the medical conditions are treated and the child grows into adulthood they tend toward obesity unless they are on a program that assists them in an appropriate mix of nutrition and aerobic exercise.

Mary Jo is a 28 month old who has Down syndrome. She has no cardiac complications. She required ear tubes for multiple ear infections when she was eleven months of age. Other than this, she has been in good health. Her mother asks her ITDS to accompany her to Mary Jo's next visit to see the pediatrician. Mother is concerned that Mary Jo is getting fat. Her muscle tone is mildly hypotonic, but Mary Jo is active and seems to enjoy most of the sensory motor activities that would be expected for a child her age. Mary Jo's BMI was at the 95th percentile plotted on a 0 – 2 female growth chart for typical children when she was 23 months of age.

Question: Which of the following would the ITDS expect to hear from the pediatrician?

  1. Children with Down syndrome are usually as active as their typical peers.
  2. Children with Down syndrome use fewer calories overall to perform the same functions as their typical peers.
  3. Children with Down syndrome should have their height and weight measured on growth charts that are appropriate for the general population of children.
  4. Limiting calories would be the preferred method of controlling weight in children with Down syndrome.
  5. Increasing aerobic activity would be the preferred method of controlling weight in children with Down syndrome if there were no other complicating medical conditions to consider.
  6. Mary Jo has a BMI that may be indicative of future problems with obesity.

Question: Based on information from the article by Joan Medlen, M.D. (1996) and the content in this lesson, how would the ITDS clarify or expand the information from the pediatrician for the mother?

Prader-Willi Syndrome

Another genetic condition where children are extremely vulnerable to obesity is Prader-Willi syndrome. Children with Prader-Willi syndrome usually are compulsive eaters. Children with Prader-Willi may have mild to moderate global developmental delays. Often they tend to have a condition known as hyperphagia. This means they will eat everything in sight. In addition to the developmental pediatrician, it is recommended that a behavioral specialist work with the family to create a plan so that food intake can be monitored.

William's Syndrome

A genetic disorder that occurs in approximately 1 out of 20,000 births is William's syndrome or Williams-Beuren syndrome. There is a defect of the seventh chromosome that can be from either parent. Infants and toddlers with William's syndrome have infantile hypercalcemia, growth retardation, and usually have problems with colic. Feeding issues may also include vomiting and constipation. It is not uncommon for an ITDS to be involved on the team for a child with William's syndrome. It is important to recognize that children with this syndrome are auditory learners as opposed to visual learners. There are issues with attention deficit that will require close collaboration with the developmental pediatrician or psychologist when planning learning strategies and routines to assist nutrition.

Endocrine Disorders

Endocrine disorders are disorders associated with ductless glands such as the thyroid, the pancreas, the adrenals, and the pituitary. Some of the most common endocrine disorders include diabetes and hypothyroidism or hyperthyroidism. Children's Hospital in Wisconsin has a website that is easy to navigate and contains information about numerous endocrine disorders affecting children. Most persons have heard about diabetes. This is a life altering endocrine disorder that affects a person's ability to metabolize carbohydrate due to a malfunction in the pancreas that affects the body's ability to produce insulin. The ITDS should particularly be alert to symptoms of low blood sugar in young children such as the symptoms of disorientation, unusual pallor, and sleepiness.

The over or under production of thyroxin that is the thyroid hormone also causes the infant and toddler to have issues in growth and development and can affect cognitive abilities if untreated.

There are a number of endocrine disorders that cause nutrition problems in infants and toddlers and the ITDS is wise to access the internet and also the local library when a child is referred with a condition that is unfamiliar. All aspects of development including symptoms and common recommended intervention strategies should be researched, if possible, prior to meeting the child and family.

Management of Nutrition

A key to managing nutrition is the assessment of developmental and neurological status and involvement of team members to address issues. The team can consist of a pediatric nutritionist, an endocrinologist, a developmental pediatrician, a behavioral specialist, the ITDS, and individual therapists as determined based upon the presenting information for the child and family. The assessment should consist of age appropriateness of feeding skills and the daily routines of the child and family. An assessment of aspiration risk and assessment of gastro-esophageal reflux are specific assessments that may be needed. Remember, the ITDS does not operate outside of the scope of practice for their individual regulated profession, but consults with the appropriate specialist together with the family so that everyone is working together to promote the nutrition plan.

cute Illnesses, Child Care, Prevention and Intervention Acute Illnesses

Acute illnesses are those that have a sudden onset and generally have a short duration if treated properly. The ITDS should be knowledgeable about some of the most common acute illnesses seen in infants and toddlers.


Allergies are a response of the body to foreign agents that are usually proteins. The response is specific to the allergen or agent to which the child is allergic and does not have immunity. The body's response is a mediated reaction using parts of the immune system to ward off the offending allergen. Allergy responses may include a runny or itchy nose and eyes, a cough or wheeze, and airway obstruction if the allergen is airborne and has an affect on the respiratory system.

Some of the common allergens of early childhood include food allergies that may manifest in early infancy. Infants and toddlers may also have allergic reactions to pollen, dust mites, and wasp or ant stings. If the digestive system is affected, the response could include vomiting and diarrhea. If the child has handled or been in contact with an allergen that affects the dermal or skin system, the response may be rashes and welts. A single symptom in isolation does not usually indicate an ongoing allergy.

Infections often appear to mimic allergy symptoms. Whereas an allergic reaction is immediate there may be a gap between the exposure to an infectious agent and the onset of illness. Unless there is an association between an allergen and the response, it is often difficult to ascertain if the child is having an allergic response or is getting ill. The best course of action is to suggest that the child visit the primary medical provider. The ITDS should remember that allergies and infections are both common in early childhood.

If one parent has allergies the chances of a child developing allergies is about 30%. If both parents have a history of allergies there is a 70% chance for the child to develop allergies.

Allergy Treatment

Treatment of allergies includes the following:

  • Removal of the allergen. For example, if a child is allergic to cat fur, it would be recommended to the family to consider another pet.
  • Desensitization to the culprit allergen especially if the allergy has the potential to be life threatening. An allergy specialist who is a doctor that has expertise in this area provides the process of desensitization.
  • Medication may be given to regulate the immune system.
  • Medication may be given to decrease the response symptoms.
  • Medication may be given to repair damage.

Note: The ITDS does not recommend medications. This is the role of the primary medical provider and/or medical specialist.


Asthma or reactive airway disease is common. Asthma is generally a chronic condition recognized by tightening of the muscles of the bronchial tubes and increased sensitivity of the bronchial tubes or airways. Certain risk factors may be present such as exposure to tobacco smoke pre or post-natally, a family history of asthma or allergies, or being black or male. Symptoms generally appear at night with a cough and with increased expiratory effort as the airways constrict and swell. Normally the child breathes in longer than breathing out; however, as the episode persists, breathing out becomes more difficult and wheezing occurs. This is because the air is trapped and causes hyperinflation of the lungs.

A trigger is something that creates the onset of symptoms. The trigger may be an allergic trigger or a non-allergic trigger. Non-allergic triggers include infections, dust, smoke and certain smells. Individuals may trigger because of previous experiences such as an infection or bronchopulmonary dysplagia. Once the wheezing starts it is important to minimize inflammation. The airway remains very sensitive to the trigger for several days to weeks after the initial trigger.

Asthma Treatment

Treatment of asthma includes:

  • immune system mediators such as cytokine inhibitors and inhaled steroids
  • bronchodilators
  • oral steroids
  • intravenous steroids and oxygen therapy that would be provided in a hospital

All episodes of asthma should be reported to the primary medical provider who will monitor the child and prescribe as needed. Most pediatricians now develop an "Asthma Action Plan" to describe specific actions to take when asthma is present. This plan should be shared with all caregivers, especially childcare staff.


Colds are the most common upper respiratory infection (URI). Viruses are the usual cause for colds. A runny nose called rhinorrhea and a cough are common especially at night. There is often an initial low-grade fever. Other viral symptoms may also be evidenced dependent on the virus. The rhinorrhea usually lasts from 1 – 2 weeks. The nasal drainage turns from clear to cloudy and is thicker and greener during the course of time. If there is a new onset of fever at the end of the course, it could be a signal that there is a bacterial infection or a new illness and this should immediately by checked by the child's primary medical provider. Complications of colds are otitis media and sinusitis.

Ear Infections

Ear Infections can occur in the outer, middle or inner ears, but are more common in the middle ear. An infection of the middle ear is called otitis media. Otitis media usually occurs secondary to a cold. It may also begin as a response to an allergen. Approximately 33 % of children are prone to otitis media infections and many have three or more infections a year. The first infection usually occurs before 3 months of age. There are also a third of children who almost never have an otitis media infection.

Viruses are the most common cause of ear infections. Bacteria may also cause otitis media including pneumoccus, group A streptococcus, staphlococcus aureus, and Haemophilus influenza. A mycoplasma infection may also cause an otitis media. The symptoms include redness of the eardrum (tympanic membrane), fluid behind the eardrum and/or pus in the external auditory canal. Fluid may continue to be present following the infection. Seventy percent (70%) of children have fluid present 2 weeks after the infection; 40% after 4 weeks; 20% after 2 months; and 10% after 3 months. Fluid causes sounds to be muffled and can affect the acquisition of good speech. Therefore all otitis media infections need to be followed closely by the primary medical provider or health care practitioner.

Ear Infection Treatment

The primary treatment of ear infections includes the use of antibiotics over a period of time. Sometimes tubes are inserted into the ears if fluid continues for longer than 3 months. This requires the child to be anesthetized while they are inserted. Tubes may occasionally cause scarring and can affect the tympanic membrane. Therefore, a specialist needs to explain the pros and cons of this treatment carefully to the parents.

What should the team consider concerning ear infections related to hearing and speech?


Diarrhea is stools without form and with a lot of water. The cause of diarrhea in infants and toddlers is often linked to food. Diarrhea can be caused by infections with viruses being the most common cause; however bacteria and protozoa may also be the cause.

Soft, frequent stools may be common in infants who are fed breast milk. These infants may have up to 10 stools per day whereas a formula fed infant may have 1 – 6 stools a day or as few as one stool in three days. A soft, loose stool may be normal if the stool has some form and the frequency is normal.

If blood is noted in the stool, if the infant appears to be in continuing pain, and if there is weight loss, colitis (inflammation of the bowels) is suspected and should be treated by the primary medical provider immediately. Damage can occur if the diarrhea is severe or prolonged, keeping the intestine from absorbing necessary water and nutrients. Diet can worsen the condition and an infant under the age of 12 months should not be given cow's milk. Infants take up to two weeks to repair damage and toddlers take a shorter period of time whereas adults only take 2 – 3 days. The intestine is considered repaired if the intestine is able again to reabsorb water and the diarrhea abates. If gas, cramping, and loose stools persist after the repair period the infant or toddler would still be at nutritional risk of malabsorption. Treatment of colitis is usually supportive. If accompanied by a fever the child may be put on antibiotics. Often a lactose-reduced diet is recommended.

Child Care and Group Settings

Child care and group settings are where most toddlers and many infants spend their days. Infants and toddlers with special needs are also served in child care centers or in family child care homes. The Division for Early Childhood (DEC) of the Council for Exceptional Children recommends that young children with disabilities have access to learning opportunities in their community (Sandall, 2000).

The ITDS has an opportunity to ensure the safety and health of young children with special needs, as well as helping to provide guidance on development, when a child is in a child care center. Can you think of some ways the ITDS can assist the family in ascertaining the safety of a center?

Bacterial Infections in Child Care

Physicians and other health care professionals are concerned about bacterial infections that infants and young children can acquire in child care settings. Bacterial infections are more prevalent when children are cared for in group settings. Good hand-washing techniques and a clean environment are essential to the overall health of the children and the adults in the center. Encourage the family to inquire about infection control policies. As an example of the higher risk for infection, the National Association of Child Care Professionals provide documentation that children in child care are at high risk for antibiotic resistant ear infections and are also at significantly higher risk for repeat ear infections.

Choosing Child Care Settings

The family has several options when choosing a child care setting. They may opt for a small or a large family child care home, a large center or a drop-in child care facility. The need for child care is a discussion that can take place with the team.

If the ITDS is the primary provider, what considerations should be made in regards to helping a family access child care?

Adult-Child Ratios

Low adult-child ratios that meet the standards of the National Association for the Education of Young Children (NAEYC) tend to be associated with more developmentally appropriate interactions between the adult caregivers and the children. For infants, the NAEYC recommended practice for adult-child ratio is 1:3; however, licensing allows for 1:4 in most counties. For toddlers, the NAEYC recommended practice for adult-child ratio is no more than 1:6. Lower adult-child ratios contribute to the safety at a center.

Specialized Child Care

There are child care agencies that serve sick children and agencies that serve children with chronic health care needs such as Prescribed Pediatric Extended Care (PPEC) facilities. Children need a physician's prescription to attend a PPEC. PPECs are considered as alternative to home nursing or prolonged hospitalization. Children served in PPECs need very low adult-child ratios because non-ambulatory children and children with special equipment require a greater amount of time to exit for fire safety and also for the provision of routine care giving.


The ITDS assesses the child with special needs in the child care setting and creates a Plan of Care and a Daily Activity Plan. This is done in collaboration with the child care provider to support the individual development of the child. The plan is based on the behavioral observations of the child's interactions with peers, adults, and materials in the environment (e.g. toys, books). The ITDS, who is often the Special Instruction Consultant (SIC) for the child, serves as a mentor/coach for the child care provider who may be a paraprofessional. The ITDS provides examples of ways that teachers can integrate developmental strategies into the everyday routines of the child.

Bites and Scratches

Bites and scratches can be sources of infection and disease. Bites from animals can result in rabies or tetanus. Treatment of animal, as well as human, bites must be promptly sought through the child's primary medical provider. Steps to follow for bites and scratches are outlined below.

  • If bleeding, pressure is applied using gloves to protect oneself from blood borne disease.
  • Clean the wound with soap and water by running water over the wound for five minutes.
  • Cover the wound with a sterile pad.
  • Call the child's physician.
  • Call animal control to capture the animal. Do not try to capture the animal.
  • Access the emergency room if the bleeding does not stop, if the wound is deep or longer than a half inch, if the animal was acting strangely, and if any body part was severed. If a body part is severed wrap it in a sterile pad and take it to the emergency room with the child.


Cuts occur frequently during the toddler years. The same general principles apply to cuts as to scratches. Listed below are things to remember about cuts.

  1. Clean the wound with soap and running water for five minutes.
  2. If the cut is deep or longer than half an inch seek treatment immediately.
  3. If the wound is bleeding, apply pressure and raise the injured part.
  4. Do not apply a tourniquet.

First, Second and Third Degree Burns

Burns are classified as first, second, or third degree. First-degree burns cause redness, pain and swelling, but usually heal well if treated promptly. Second- degree burns blister and are very red. Third-degree burns are very deep and result in nerve damage and disfiguration. The first principle related to burns is prevention. Note the presence of candles, matches, lighters, stove burners, and flammable products in the home or child care environment and provide cautionary advice. If a child is burned:

  1. Remove the clothing unless the clothing is sticking to the body.
  2. Run cool water over the burn.
  3. You can apply a small gauze pad over the affected area for first-degree burns.
  4. If it is a second or third degree burn, seek medical help promptly and cover the burned area with a clean soft cloth.
  5. Medical help should also be sought for any burn that is caused by chemicals or electricity and for any burns that involve the face, head, hands, or genitals.
  6. If the burn looks very red, swollen or infected, medical help should be sought.


Sunburn is a burn that occurs when children are exposed to harmful ultraviolet rays of the sun. This is the most preventable type of burn and the one often ignored by caregivers. The ITDS, when planning the daily outdoor routines with a family, can assist the caregiver with preventive information. The child needs to be properly clothed with a shirt, hat and sunglasses to prevent skin and eye damage.

Sunscreen with a minimum sun protection factor of 15 should be applied at least every two hours while the child is outside. Sunscreen with a higher sun protection factor (30 – 45) provides a greater barrier from ultraviolet rays. If the child goes into water, the sunscreen needs to be reapplied immediately upon exiting from the water. If sunburn does occur, the child should be removed from the sun immediately. Cool showers or compresses over the affected area will relieve some of the pain. The child will need extra fluid for a few days to prevent dehydration. Do not put butter, lotion or crèmes on the burn. The child may need ibuprofen (Motrin) or acetaminophen (Tylenol) but only as directed by the primary medical provider.

Cardio-Pulmonary Resuscitation (CPR)

Cardio-Pulmonary Resuscitation (CPR) is mouth-to-mouth breathing in combination with chest compressions necessary to save a life when breathing and the beating of the heart stops. The first step in any situation is to call for help before you begin so someone can place a 911 call. If you are alone make the call yourself as quickly as possible before you begin CPR. In any situation you must then be sure the child is in a safe place to administer the CPR. There are three basic ABCs of CPR:

  1. Check the Airway to be sure that nothing is blocking the flow of air.
  2. Check to ascertain if the child is Breathing.
  3. Check to see if the heart is beating. (C for Cardiopulmonary)

It is recommended that the ITDS be properly trained to administer CPR. A class on CPR usually takes about four hours. Classes are often offered through the American Red Cross, the American Heart Association or in some instances, the County Public Health Department.


Seizures can be very scary to the child having the seizure and also to other children and adults in the environment. Most seizures last only a few minutes and are not life threatening. Febrile seizures occur in very young children and usually do not cause any serious long-term harm. Guidelines for seizures are as follows:

  1. If possible, get the child to the hospital or call 911 especially if this is the first time that the child has had a seizure.
  2. Place the child on the floor in a safe place and remove any dangerous objects that are close to the child. Place a soft pillow or cloth under the head.
  3. Loosen the child's clothing, especially around the neck and head.
  4. Do not try to prevent the child from shaking.
  5. Do not put any fingers or anything else in the child's mouth.
  6. Put the child on his/her side if vomiting to prevent aspiration.
  7. Do not give any food or drink.
  8. Call the primary medical provider and the family if the child is in the care of someone else.


The following is a general guideline of when immunizations are due. The schedule may vary based on location. The primary medical provider will determine when any vaccination is contraindicated for specific conditions.

The ITDS, in concert with the service coordinator, can check on the status of immunizations at the specified times. When should the first set of immunizations be given? What medical conditions require modifications to the schedule of immunizations?

Dental Care

Dental health care begins before the first tooth erupts usually between 4 - 7 months, but this varies and can be as late as 10 - 11 months. Usually the bottom front teeth are the first to emerge. It is recommended that parents can assist dental care early by washing the gums and tongue with a soft damp cloth or gauze after bottle-feeding. This reduces the bacteria left in the mouth. As the teeth erupt, the teeth should also be cleansed with the cloth.

If there are problems with cavities or the gums, the first visit to the pediatric dentist is usually scheduled around the first year birthday and every six months thereafter, or as prescribed by the dentist. If the teeth and gums are healthy, with good healthy feeding and brushing practices, the first dental visit can be as late as three years old.

An important consideration for dental care is not putting a baby to sleep with a bottle in the mouth. The sugar in the formula will increase bacteria and will wear away the teeth's enamel. The primary or baby teeth are very prone to the acid created by these sugars. If a baby is left with a bottle there is also danger of aspiration and formula entering the Eustachian tubes and causing ear infections. Thus it is best to feed the baby first and then put the baby to bed.

A consideration during the first year of life is that infants often show discomfort when cutting their teeth. There are tips that the ITDS can share with families on reducing teething discomfort.

If a tooth is lost prematurely, (e.g. a fall at age 2), the tooth should be wrapped in a clean wet cloth and the pediatric dentist and primary medical provider should be called immediately.

Vision and Hearing Overview

Effective vision and hearing are very important to learning. Most of what typically developing children learn is through these two senses. A loss of functioning in a sensory organ affects the acquisition of developmental skills because the child lacks access to information in his/her environment. If the child is unable to access his/her environment, then active learning is not able to occur at a developmentally appropriate rate. Particularly important are the windows of opportunity for cognitive growth in the first few months to the first few years of life.

It is important to distinguish the sensory impairment from a disability. A disability is the inability to effectively gather information for learning. If interventions can be initiated to assist the infant to gather information for learning, then the sensory impairment can be compensated for and developmental progress occurs. Therefore, early diagnosis and intervention are especially important for infants and toddlers who have visual or hearing impairments. Sensory impairments can affect incidental learning processes, the bonding experience, the self and body image, motivation, and safety. Learned helplessness and isolation can occur as a result of the impairment.

Visual Impairments and Blindness

A visual impairment refers to a functional loss of vision rather than to a disorder of the eye. The eye disorder is what leads to the visual impairment. Any influence that restricts or obstructs vision may affect an infant's window of opportunity to develop normal visual cortical function. The window of opportunity for this development is the first six months of life. Although the sensitive period for the development of visual acuity is during the early years of life, families should not give up on encouraging their child to use whatever vision they have through support of interaction with vision stimulation activities.

Required reading for this lesson includes the Pediatric Visual Diagnosis Fact Sheet from the Blind Babies Foundation Other required reading material to assist the ITDS in learning about common visual diagnoses, their definitions, causes and visual and behavioral characteristics are also found in the Resource Bank. Of major importance to the ITDS are the teaching strategies. These will assist in planning effective interventions.

The eye is an organ that contains several structures. These include an anterior chamber, lens, and a posterior chamber known as a globe. The globe contains fluid called the vitreous, and the rear or back of the globe is called the retina. The eye operates like a camera allowing light and visual images to be recorded on the retina (like the camera's film).

The anterior chamber contains the focusing part of the eye that focuses light on the retina, which is actually the seeing sense organ. The muscles of the eye bend the lens to focus the light differently. The iris, or the colored portion of the eye visible to others, is a structure made up of tiny ciliary muscles that open and close the opening of the lens, called the pupil, to control the amount of light that is allowed into the globe. The eyelid also assists the iris in controlling the amount of light. The image that is seen on the eye surface or retina is then transmitted via an electrochemical signal to the visual cortex of the brain. The visual cortex assists in the interpretation of the visual image to link it to the experience. This is called visual perception or perceptual function.

Visual Impairment

Visual impairment may be a result of damage to the structure of the eye or even a congenital absence of the eye(s) known as anophthalmia. Visual impairment or blindness can also be caused by damage to other areas of the visual system such as the visual tracts or visual cortex.

Some diseases relating to structural abnormalities of the eye include glaucoma that can affect the anterior chamber of the eye, corneal opacities, cataracts on the lens, and retinal problems such as retinopathy of prematurity.

All eye problems should be referred to an ophthalmologist who is a medical doctor specializing in the care and treatment of diseases and conditions of the eye. The ITDS can assist in this process by providing a copy of the report to the specialist when he/she knows that a child is being referred for vision testing. The ITDS can also be alert to children who

  • Continually rub their eyes.
  • Appear sensitive to light.
  • Do not reach for toys at the appropriate age.
  • Do not track or follow objects.
  • Do not blink in response to visual threat such as a hand passed before their face.
  • Stare continually at a light.


The number of young children with visual impairments is relatively small. There are approximately 0.108 % of young children diagnosed with visual impairments. Of these, 3.5 % are unable to perform age appropriate activities. Children with unilateral blindness have vision in one eye, but must adjust their orientation and mobility to accommodate the loss of vision in one eye. This includes the loss of depth perception, as a bilateral visual system is needed for this. Infants and toddlers with severe visual impairment usually have other co-morbidities with other neurological conditions that will require a team approach to plan intervention and support with the family.


Embryological causes of visual impairment can result in a coloboma (a cleft or defect in the normal continuity of a part of the eye) to major malformations or anophthalmia (absence of the eyes). Developmental interruptions in the fetal stage result in minor malformations. Infections during this period can cause cataracts, glaucoma, and/or chorioretinitis.

Vision can be affected by a premature birth. Retinopathy of prematurity or damage to the small blood vessels in the retina can result from the combination of prematurity and exposure to oxygen. The visual system is prone to imbalance during the early years and can be affected by muscle or cortical preference that can result in loss of visual function.

Problems such as that seen with amblyopia, (an asymmetric loss of vision due to the visual cortex not using the weaker eye as much as the dominant eye for vision), are seen in the first years of life. If amblyopia, sometimes called "lazy eye", is left untreated it can result in some field loss, poor or absent depth perception and possible blindness in the weak eye (Harrell, 1992; Levack, 1994).


As noted in Lesson One and the opening vignette, families must cope with the loss of the dream of a perfectly developed infant and then plan for major life changes at the same time. When a child cannot see or has less than perfect vision, the family, as well as the child must learn and achieve coping skills. The ITDS should provide support accordingly. In addition, the infant and toddler must learn and achieve coping skills related to his or her developmental level. Plans of Care must always include emotional support as well as community supports that will build the future for the child. This can include services from a local Family Resource Specialist (FRS) through Early Steps and/or counseling services if requested.


Treatment of eye problems may be medical and/or educational. Examples of medical treatment include medications, corrective lenses or eye patches. Surgery may also be required. Glaucoma may be treated both medically and surgically. Cataracts require surgical removal. The treatments for strabismus or muscle weakness include the conservative measures of patching the stronger eye and corrective glasses. Sometimes a more aggressive approach includes surgical correction. Retinopathy of prematurity requires frequent eye examinations. If retinal detachment is a risk then laser surgery is usually performed.

Educational treatment is a federal entitlement for all persons identified as blind or visually impaired. Services are provided from birth or upon diagnosis. Infants and toddlers who have visual impairment will usually have slower motor skills attainment. If there is some vision, visual perceptual differences still remain. Language differences and an alteration in the development of social skills are also a concern.


As young children are assessed for appropriate intervention it is important for the ITDS to understand the terms that families will hear. Services are based on the amount of support a child will need. The National Dissemination Center for Children with Disabilities (NICHCY) provides the following definitions:

  • Low vision refers to a severe visual impairment and indicates that the person needs adaptive lenses, adaptations in lighting, large print books or Braille books. This refers to a child whose best corrected vision is lower than 20/70 in the better eye.
  • Legally blind means the person has less than 20/200 vision in the better eye or a very limited field of vision.
  • Totally blind refers to a person who has no vision and must learn through non-visual instructional methods including the use of Braille readers.

Strabismus and Amblyopia

Strabismus, which is sometimes referred to as crossed eyes, is a condition in which a person cannot align both of their eyes simultaneously due to an imbalance of the eye muscles. One of the eyes may turn in, out, up, or down. The eyes do not work together to focus the image in a binocular fashion. Strabismus also affects depth perception and eye-hand coordination. If untreated, the brain, rather than being confused with two competing visual signals, quits accepting one signal and vision can be permanently affected.

Amblyopia or 'lazy eye' results in reduced vision that is not corrected with glasses or contact lenses and may not be apparent to caregivers. The brain does not fully accept and interpret the image from the amblyopic eye; therefore, it is important that the condition be diagnosed by a thorough eye exam by an eye specialist, especially when the pediatrician suspects the condition during routine well baby checks. Amblyopia is best treated early between the ages of 6 months to 2 years.

Consider this scenario.

The ITDS is likely to assume responsibility as the Primary Service Provider, for children who are referred with strabismus and are patched by the ophthalmologist with poor vision in the un-patched eye. Vision teachers/specialists do not serve this population. It is critical for parents to receive support in patching the "good eye" so that permanent vision loss will not develop in the "bad eye".

What are strategies the ITDS should follow when working with the young child and the family?


Family Options and Effect on the Family

If a child has low vision or is blind the family must always be thinking of ways to incorporate vision and tactile stimulation activities into their everyday routines. The ITDS can assist the family to think differently about how they go about their daily activities. For example, the parent may have the child hold an object while the parent talks about it and describes its characteristics. Everything must be touched and described: the toothbrush, the hairbrush, even the toilet.

The parent or caregiver becomes the eyes for the child during these precious early years and as the child grows. The caregiver needs encouragement to use words that describe color, shape, and size and not to veer away from the "seeing" words. The family has to ensure that they describe what they are going to do to with their child or what will touch the child prior to taking the action. This is because the child cannot see the approach. Remember, trust is the major developmental task during the first year of life and it is hard to trust if the caregiver approaches in ways that make the child fearful.

The family can be taught additional strategies such as to:

  • use a light colored background on which to place the child's toys.
  • make sensory toys from everyday objects such as using beans in a well-sealed potato chip can.
  • make textured items.
  • use a light box to get objects to show better.

Referral Requirements for Vision

Children who are at high risk for eye problems should be evaluated early. The Early Steps Workgroup on Visual Impairments identified high risk populations for follow-up. They include infants who:

  • are very premature.
  • have family histories of congenital cataracts and/or retinoblastoma.
  • have metabolic or genetic diseases that are associated with eye abnormalities.

To qualify for services from the local Early Steps program due to significant sensory impairment in the visual area, the following criteria must be met:

  1. Bilateral lack of fix and follow OR an approximate visual acuity of 20/70 or less in the better eye after best possible corrections
  2. Constricted peripheral field that could interfere with daily mobility or activities or bilateral central scotoma involving the perimacular area (<20/80)
  3. Bilateral Stage III, IV, or V retinopathy of prematurity with evidence of affect on visual performance
  4. Bilateral progressive loss of vision which may affect the child's ability to function in his or her natural environments
  5. Evidence of Cortical Visual Impairment (CVI)
  6. Strabismus that requires patching of the better eye with approximate visual acuity of 20/70 or less in the un-patched eye after best possible correction

(Early Steps Part C Criteria Specifying Visual Impairment Considered to be a "Significant Sensory Impairment", 2004).

Once it is confirmed that the child has vision impairment, the major consideration for assessment is to have the appropriate team members present. Information from the eye care specialist should be available and presented if the child has a previously diagnosed vision disorder. If a vision problem is known or suspected, it is recommended that a teacher for the visually impaired participate as the primary evaluator of functional skills. Vision protocol requires a full functional vision assessment by a teacher of the visually impaired. A team approach is crucial for infants and toddlers with vision problems. The primary provider and the ophthalmologist should communicate regularly with the family so everyone is operating with the same expectations.

When the child uses glasses or is patched, the team needs to ensure that the glasses and/or eye patch are in place during the assessment. If the child has low vision, a light board and/or a bright background for the presentation of toys and items is recommended. The parents and major caregivers for the child should be present and may be used as the primary presenter of items as they generally know how to ascertain the best responses. The team should observe the child's interactions with people and the environment. Key to the assessment process is knowledge of developmental milestones and how they are affected by decreased vision and reduced interaction with the environment. It is also important to utilize knowledge from the eye care specialist when a diagnosis is provided in order to plan the intervention strategies.

If the vision diagnosis is known prior to the assessment for intervention planning, the team needs to take appropriate intervention strategies with them in order to assist the family in planning outcomes for the Individualized Family Support Plan (IFSP). The teaching strategies found in the resources on Blind Babies are excellent as are those found on the strabismus web page (referred to earlier). A teacher of the visually impaired or other vision specialist should be an involved team member in planning the outcomes for the IFSP.

Testing Instruments

The developmental assessment must accommodate for the visual impairment when choosing the actual instruments for the assessment. The team needs to read the administration manual of the developmental tests being considered and make appropriate accommodations per the publisher's instructions. Many norm-referenced instruments do not include children with vision problems in the norm sample and therefore would not be appropriate for testing the child. If the child has qualified for Early Steps based on an Eye Specialist Report, then the team would provide only the assessment for intervention planning and would not need to administer a norm-referenced test for eligibility. The team would need to be familiar with the items ahead of time to eliminate or substitute strategies in order to accommodate any that require vision.

Deafness and Hearing Impaired

As a means of introducing the next major sensory impairment area, the following letter is included. It was written to parents and was shared with Early Steps for use in this portion of the lesson on deafness and hard of hearing. The letter was written by a parent of two children with special needs. It is educational, informative and sensitive.

Dear Parents:

My husband and I are the proud parents of two incredible children, both with hearing loss. Unfortunately our state did not have newborn hearing screening when they were born. The similarities between our children are they both use cochlear implants to hear and are siblings. Their paths to this point are remarkably different. My son's hearing loss wasn't identified until he was about 22 months old. He was initially fitted with a hearing aid in his better ear and the second aid 4 months later. At 2 ½, his hearing loss was mild to severe. He began speech therapy and slowly gained language skills. Since our educational backgrounds were not in the medical field, we listened to the medical experts, and followed all their advice.

When our daughter was born, we tested her hearing at 3 months on the advice of our ENT. She was born profoundly deaf! After the initial shock wore off and we worked through the emotional turmoil, we felt prepared to help her by whatever means necessary. She began wearing hearing aids at 4 months and started speech therapy at 5 months. I began reading, researching and meeting other families with deaf children. I discovered that the services my son was receiving were not at all appropriate for a child with hearing loss. We lost critical time and wasted over a year of speech services!

Although my son only had a mild to severe loss, which eventually progressed to profound, he experienced a 2-year language gap. His sister who was born with a profound hearing loss, had the advantage of early intervention services, appropriate speech and language services, appropriate amplification, ultimately a cochlear implant at an early age, never had a language gap of more than 12 months! Her language skills developed similarly to those of hearing children. By the age of 4 ½, she closed her language gap. She is fully mainstreamed in the third grade, is an avid reader, plays the piano, dances, takes drama and has an incredible social life for an eight year old. Our son is a 6th grader with a sense of humor who plays tennis, flag football, lacrosse and baseball, is a boy scout, and makes the honor roll at his school.

By becoming informed parents of services for the deaf, we searched and found the services that best met the needs of our family. It was a long, long road to where we are today, but worth every minute and experience. Our children are children first, who happen to hear differently than we do.

Anatomy of the Ear

The ear has three parts: 1) the outer or external ear or pinna and the auditory meatus or ear opening; 2) the middle ear, consisting of the eardrum, the middle ear space, and the three small bones that transmit sound energy from the air to the bones and then to the fluid in the inner ear; and 3) the inner ear that is the actual sensory organ that converts energy of sound to electrical signals that go to the brain via the auditory nerve.


Hearing loss is a barrier to perceiving communication that occurs in everyday places. The level of hearing loss, noise in the environment, and distance the child is from meaningful communication or sound all interact to determine the size of the barrier that the hearing loss imposes on development of communication skills.

Hearing thresholds determined through audiological evaluation define the degree of hearing loss. The following paragraphs provide pertinent information on persons with mild to profound hearing loss.

Persons with mild or unilateral hearing loss (occurring in only one ear) will have difficulty perceiving speech in a clearly understandable manner at a distance greater than 6 feet. In the presence of noise, they will have inconsistent perception of language and may miss important social cues when no amplification is used.

Persons with a moderate degree of hearing loss are unable to hear when conversations occur at typical distances (6 – 8 feet) but will respond to some sounds that occur at close distances when no amplification is used.

Persons with a severe degree of hearing loss will not perceive speech sounds unless amplification is used, and may not hear all speech sounds depending on their ability to hear across the frequency (pitch) range. Even with amplification, speech sounds may be perceived as substantially quieter than what is experienced by persons with normal hearing. It is important to remember that you need to be relatively close to the person when speaking.

Persons with profound degrees of hearing loss will not be able to perceive a substantial portion of the speech signal even when amplification is used. Learning language through hearing alone with a profound hearing loss can be compared to figuring out a picture puzzle with most of the pieces missing. This is why visual forms of communication or cochlear implantation is considered as a viable means to augment whatever small amount the child is able to perceive auditorially.

Ear infection, fluid behind the eardrum or a structural problem with the formation of the outer ear or bones of the middle ear will cause some level of blockage of sound so that it will not be conducted effectively into the inner ear. Hearing loss caused by these types of blockages is called a conductive hearing loss.

Permanent Loss

Most of the hearing loss considered 'permanent' is due to missing, deformed, or damaged hair cells in the inner ear. The inner ear is considered the sensory organ of hearing. When a signal created by a sound is conducted into the inner ear, the hair cells bend and a very small electrical signal is sent up the auditory nerve to the brain. Any problem in hearing that is caused by the hair cells not delivering these signals to the brain is called a sensorineural hearing loss.

A person can have a blockage in the outer or middle ear causing a conductive hearing loss that occurs at the same time as they have a problem with the hair cells sending signals to the brain causing a sensorineural hearing loss. In this situation the person is said to have a mixed hearing loss.

There are a small number of persons who have normal structures in the outer, middle and inner ear but who have difficulty processing sound when it reaches the brain. This could be compared to having a radio on, but tuned improperly to a radio station so that varying degrees of static are heard along with the music or speech. This is caused by certain nerve cells in the brain not firing in a synchronized manner to bring the sound signal intact to the portion of the brain that can process it for meaning. These persons are said to have auditory dyssynchrony. Persons with auditory dyssynchrony typically receive limited benefit from amplification because hearing aids make sound louder but they do not assist in ‘tuning the radio station' part of the problem. Cochlear implants have resulted in some success in improving the sound processing ability of persons with auditory dyssynchrony. Auditory dyssynchrony can occur in a wide range of impairments and may be present to some degree when sensorineural hearing loss also occurs. In these cases, amplification may provide some degree of benefit.

Causes Summarized

A summary of the causes of hearing impairment is as follows:

  1. Lack of anatomy for hearing is one cause of conductive loss. Some syndromes are manifested through the lack of an outer ear or ear opening, however, the internal structure is intact. In cases like this the child will need a bone conduction hearing aid until surgical correction is performed.
  2. Conductive loss due to structural abnormalities is common in many syndromes and can be worsened with middle ear infections.
  3. Genetic causes are the most common with 1 in 2000 children who have a genetic disorder affected with a sensorineural hearing loss. Genetic hearing loss may have a late onset after birth or can cause congenital hearing loss.
  4. Acquired causes include congenital infections or bacterial meningitis in neonatal or infancy periods, high bilirubin levels, exposure to ototoxic drugs, perinatal depression (low Apgar scores), and brain abnormalities that can cause sensorineural hearing loss.
  5. Structural causes include malformations that are present from conception. They can also cause sensorineural hearing loss if malformations exist in the inner ear.

Audiological Evaluation

It is critical for audiological evaluation to occur by three months of age so that a child with significant hearing loss will be identified and SHINE services can begin. Listening typically begins before birth. Research suggests that the brain development of children with hearing loss will be affected when no auditory stimulation is consistently received. Thus, it is very important for appropriate intervention (hearing aids, SHINE) to be provided prior to six months of age. If consistent auditory stimulation and quality early intervention to develop communication skills is provided after the age of 6 months, a child will learn skills but there may be delays in communication that cannot be effectively habilitated.

By performing a battery of tests, the audiologist can gather information to differentiate between possible sensorineural hearing loss and conductive hearing loss due to the presence of ear infections. During the test, clicks or tones can be presented through earphones (air conduction) and then tones can be sent through a small vibrator placed behind the ear that will direct sound to the inner ear that is embedded in bone (bone conduction). In this way a definitive test to identify permanent hearing loss can be obtained, even if a child is experiencing an ear infection.

When a child is at a developmental age of 5-6 months, he or she has the ability to look around and identify the source of sounds. When a child is 6 months of age or older, the child should be evaluated by an audiologist who will observe the child's reinforced behavioral responses to sound. If the child fails this exam then the child's ears will be tested with a tympanometer to determine if the cause of the hearing problem could be due to ear infection. An otoacoustic emissions (OAE) test may then be done as a means to determine inner ear/cochlear problems. If the child appears to have hearing difficulty that is not related to ear infection, the audiologist may schedule the child to return for an auditory brainstem response (ABR) test. The ABR is for diagnosing auditory nerve and associative cortex issues of the brain. With this test battery, the audiologist is able to determine when a child has a hearing loss and the location of the cause of the hearing loss within the auditory system.


As with vision loss or impairment, hearing impairment and deafness in an infant or toddler brings forth new terms, new ways of planning for the child's future and new issues within a family. One of the most important roles of the ITDS is to assist the child and family in discovering how the child can be integrated within his or her community from the very beginning. The most important resource that can be provided to a family at this time is the information that the SHINE service coordinator and SHINE provider bring. They provide the family with unbiased information on all the methods of communication that can be used with a child who is deaf or hard of hearing. This will help the family make an informed choice regarding how they want to communicate with the child.


It is important to note that first and foremost, all ear infections need careful follow-up by a primary medical provider. When an infant or toddler fails a hearing screen, the child is re-screened and must have a full hearing evaluation to diagnose the problem if the re-screen is also failed. If a family chooses amplification methods to enhance their child's hearing, the aids need to be fit as soon as possible after the diagnosis is made to promote language acquisition.

If the sensorineural system is intact, but middle ear disease is present, then the infection is treated first and a follow-up hearing test and tympanogram is recommended. If there is a positive response to treatment within 8 – 12 weeks, then continued follow-up with the primary medical provider is recommended. If there is no response, then myringotomy with tubes is considered.

If the sensorineural system is not functioning properly, but the middle ear is intact, then hearing aids will be considered. The family may then want to pursue an evaluation for cochlear implant(s).

There is a continuum of intervention methods for deafness or hearing impairment. Families need information on all methods in order to make an informed decision regarding what they want for their child and family. All infants who fail their newborn hearing screens are referred to the SHINE program.

Hearing Aids

Hearing aids are amplification instruments that make sounds louder. Hearing aids can be of analog programmable or digital technology. It is an Early Steps policy that infants and toddlers receive hearing aids within one month of diagnosis from an audiologist.

When working with a child who has hearing aids it is important to ensure that the child is wearing the aids during all waking hours and that the batteries are working. If the child covers his/her ears or pulls the aids out of the ears, it is important for the caregiver to check the function of the hearing aids to be sure they are working properly. It is also important to remember that the audiologist needs to provide continued follow-up to change the ear molds as the child grows, to adjust settings, and to monitor progress. Hearing aid follow up checks are appropriate every 1 – 3 months depending on the child's age.

Cochlear Implants

Cochlear implants are electronic devices that are implanted inside the child's cochlea. There is an external device that is a speech processor that is attached to the head at ear level. The device allows electrical signals representing sound to be delivered directly to the auditory nerve. Infants are usually considered for the surgery around 7 - 9 months of age and are actually implanted shortly after their first birthday. The parents need to do the following on a daily basis.

  • Ensure that the cochlear implant is working properly by checking to see if the cords are plugged in properly.
  • Check to see that the appropriate setting is being used.
  • Make sure that batteries are charged and that all pieces appear intact.

Infants and toddlers who use cochlear implants must be followed closely by their audiologist, especially during the first few months, to ensure that the settings are correct and the child is responding as expected to sound input.

Community Services for Hearing Impairment

Neurological and Orthopedic Conditions Overview

Incidence and Prevalence of Neurological and Orthopedic Conditions

The incidence of most neurological and orthopedic conditions is relatively rare. For example Duchenne's muscular dystrophy is estimated to occur in 1: 5600 male children and spinal muscular atrophy, type 1, may occur in 1:12,000 children. Even rarer are some of the bone conditions. As an example, osteopetrosis occurs in approximately 1:200,000 births.

Because the disorders are rare, families sometimes must locate close to medical facilities that specialize in treating the conditions or must travel long distances for treatments or consultations. The ITDS can work with the service coordinator to assist the family in accessing information through the internet that relates to a child's specific condition. Many websites are suggested for the ITDS in this lesson. Information of incidence and prevalence of specific conditions is either included in the discussion of the condition or is referenced on a web page.

Health Issues and Treatments

Neurological and orthopedic conditions are some of the most complex conditions that may affect a child. Interventions may require more than two professionals who are best integrated in a multidisciplinary team. Interventions may be medical or therapeutic in nature. Rehabilitative therapies are often needed both pre- and post-surgery to enhance the outcome of function.

The developmental team that works with an infant and toddler who has a neurological or orthopedic condition must maintain contact with the primary medical home and all specialists (e.g., neurologists, orthopedists, therapists). The team may be asked to review requests for adaptive equipment or assistive technology and the ITDS, in conjunction with the team, can prepare for meetings by visiting the library or internet sites such as those listed at the end of this lesson. Because the conditions are rare, the ITDS must be prepared to do the individual research necessary so that supports for development fit into the medical and therapeutic activities of the child's daily routine. Usually there is a need to plan for more frequent breaks during intervention sessions. The ITDS can assist the family by linking them to support networks either through referrals to the Family Resource Specialist or to other parent groups.

Neurological Conditions

Neurological conditions are those that affect the central and/or peripheral nervous system and other conditions that affect movement and muscles. Neurological conditions include disorders of development, brain malformations, neural tube defects (NTDs), seizures, movement disorders, spinal cord problems, and peripheral nerve problems.

A developmental disorder is a cognitive, communication, adaptive, motor, or social-emotional impairment resulting from a neurological, orthopedic, or other organic problem. Developmental delays, that are sometimes the result of a disorder, are often amenable to “catch-up” over time if an infant or toddler is provided with developmentally appropriate interventions. All children can benefit from early intervention supports and services regardless of the degree of disability or delay.

Brain Malformations

Brain malformations are a group of neurological conditions that can affect development in all domains. Brain malformations are described based on the context of normal embryological development. As structures develop in the embryo, various factors such as genetic predisposition will produce defects in the process. These defects will then result in abnormal structures.

The brain and spinal cord begin as a flat disk that folds in upon itself and then shuts like a zipper starting at the end that would be the head or neural fold at the cephalad end. This is the beginning of the brain. This forward or cephalad structure starts to fold in on itself and the structures enlarge and the cells multiply preferentially to form the cerebrum, cerebellum and brain stem regions of the brain.

There is a cavity formed inside the neural tube that becomes the ventricles and spinal cord. The fluid inside this structure nourishes the internal lining as the circulatory system develops. There is a remarkable magnitude of cellular proliferation and migration during early embryological development so that every organ system in the body develops. The cellular numbers peak at about five months gestation and then begin to gain in size and maturity. The nerve cells (tracts) begin to form protective sheaths called myelin that insulate the nerve tracts and act much like insulation on electrical wires so that short circuits do not occur. The dendrites, small nerve endings that make the connections between the cells, also proliferate until they reach their maximum number postnatally. Dendrites begin to prune themselves at about one year of age as cell functions are differentiated.

At the posterior end of the neural tube, the spinal cord structures develop and mesenchymal elements envelop them to form muscles. Neurons or nerve cells along the neural tube are also forming myelin sheaths.

Abnormalities (malformations) in brain structure have their origin in these early processes of embryological formation with the most significant problems resulting from interruptions or deviations from the typical processes somewhere in the second to fourth month of gestation.

Lissencephaly or "smooth brain" is one of the malformations. It is part of many different syndromes and at least one of these is caused by a gene defect. This results in a lack of convolutions or folds on the brain. Agyria is complete absence of folds.

Pachygyria is an abnormality of few, unusually broad gyri and is associated with an abnormally thick cortical plate. It is closely related to lissencephaly.

These defects are caused from migrational defects where the cells do not get to their designated places. If these defects occur in only a small portion of the brain there may be no noticeable problems, but if the defect covers a large portion of the brain there are often major developmental issues.

Significant brain malformations can be seen on imaging studies. Many other disorders of brain development may not be seen by standard imaging studies. However, they may be present and detected as they become manifest by their symptoms which often include moderate to severe retardation.

Besides these defects which can be detected with imaging studies (such as lissencephaly and pachygyria), other defects such as anencephaly (absence of most of the brain), Dandy-Walker malformations (agenesis of the 4th ventricle structures), absence of the corpus callosum, certain types of Arnold-Chiari malformations, porencephalic cysts occurring in the lateral ventricles, and hydrocephalus (water on the brain) can also be seen with imaging techniques. Cerebellar malformations, such as cysts, and abnormalities of the cerebellum, such as Arnold-Chiari, may also involve the brain stem. They may cause hydrocephalus, due to the obstruction of the spinal fluid circulating system, often at the level of the third and fourth ventricles of the brain.

Neural Tube Defects (NTDs)

Neural tube defects or spina bifida are another of the neurological conditions. Neural tube defects (NTDs) are defects of the spine that occur as a result of the neural tube failing to close. This is called spina bifida or myelomeningocele. A spina bifida may be an open defect or a closed (occulta) defect. In spina bifida occulta the spinal cord is not open to the outside. It is estimated that 5 - 10% of the population has a spina bifida occulta that is undetected and causes no problems.

Open defects are referred to as spina bifida cystica (cyst or sac like). Open defects mean that part of the tissues or the spinal cord itself may be outside of the spinal column. The defect is exposed to the outside world and the risk of infection and complications is great unless treated shortly after birth. The treatment is surgical intervention to close the opening.

There are two types of spina bifida cystica: meningocele and myelomeningocele or meningomyelocele. Meningocele is the least common type and results in very little disability. The sac in a meningocele contains tissues, but does not contain nerves or spinal cord making the surgical repair relatively simple.

The second type of spina bifida cystica, myelomeningocele or meningomyelocele, may cause significant disability because the spinal cord itself is outside the spinal column. It is so named as the meninges or the protective covering of the brain and spinal cord, as well as nerves and part of the spinal cord, are outside the body. There is risk of infection and increased intra-cranial pressure. The defect results in movement disorders and bowel and bladder involvement.

These neural tube defects occur from failure of closure of the neural plate to become a closed tube. The open defect allows the spinal cord to be in direct contact with amniotic fluid and eventually to the outside world after delivery. The defect can be isolated to the spinal cord or it can involve bony malformations.

Neural tube defects may be a result of chromosomal deletions and/or a deficiency of folic acid in the mother's diet. Therefore, women, prior to and during child-bearing years, are encouraged to eat foods such as bread fortified with folic acid, green leafy vegetables and liver.

Prognosis in spina bifida is associated with the location of the defect. If the defect is low around the S-2 or S-3 of the sacral spine, the child is usually able to walk without adaptive equipment. If the defect occurs around the L-4 or L-5 of the lumbar spine, the child will usually be able to walk with crutches or support. If the defect is higher around L-1 or L-2, the child will generally need a wheelchair for mobility. Many specialists are involved in the life of the child and family including orthopedic doctors, therapists, neurologists, urologists, and special educators.

The higher the lesion or defect, the more likely is the associated presence of an Arnold-Chiari malformation. An Arnold-Chiari Malformation is a congenital deformity at the base of the brain in which cerebellar tissue extends into the fourth ventricle of the brain. It is often associated with spina bifida. If an Arnold-Chiari malformation is present, then seizures, learning disabilities, and shunt issues are associated concerns.

Higher lumbar defects are also associated with scoliosis or curvatures of the spine such as kyphosis and lordosis. Kyphosis is a posterior curvature of the thoracic spine usually the result of a disease (lung disease), or a congenital problem. Lordosis is a curvature or bending backward at the lower spine. These are generally accompanied by hip/knee/foot problems, skin problems from immobility, and bowel and bladder incontinence. Seizures, learning disabilities, and shunt issues may also be associated with higher lumbar defects.

Lower lumbar defects do not have the associated scoliosis and hip problems that are associated with the higher lumbar defects. The defects are generally only associated with bowel and bladder problems.

Overview of Seizures

A seizure is an involuntary spasm of a muscle or muscles. A seizure can be as mild as a tic or an eye blink to tonic and clonic jerking of muscles and a loss of consciousness. Seizures can be an isolated neurological condition or seizures can be an associated symptom of another neurological condition.

One seizure does not equate to a seizure disorder. A single seizure may be the result of a high fever, an acute central nervous system infection, or a traumatic injury including a concussion. However, all seizures need to be evaluated for cause.

If a child has repetitive seizures, it is called epilepsy. Epilepsy is a chronic neurological condition characterized by recurrent seizures that may occur with or without other brain abnormalities. Several factors may influence seizure activity including changes in growth, metabolism, and sleep. Seizures may be brief or continuous and require emergency intervention if they do not stop.

Causes of Seizures

Seizures are a sign of brain dysfunction and have a variety of causes including hypoglycemia (low blood sugar), hyponatremia (low sodium), hypocalcemia (low calcium), infections, trauma, and malformations of the structures of the brain. Seizures originate with abnormal hyper-synchronous electrical discharges from the cortical neuronal network in the brain. These electrical discharges lead to an interruption in the usual brain generated electrical signals that result in an abrupt change in a person's behavior.

Seizures that are due to perinatal asphyxia/hypoxia do not usually begin right at birth but, often are manifest within 24 to 48 hours following the birth. Seizures in newborns are often not full-blown and the symptoms can be very subtle. These seizures in newborns tend to be generalized but, may be partially complex or focal in distribution.

Classifications of Seizures

Classifications of seizures are usually based on the clinical symptomatology and on electro-encephalogram (EEG) reports. Manifestations of seizures include altered consciousness, and prominent motor manifestations. Seizures with primarily altered consciousness include generalized seizures, absence seizures, and simple and partial complex seizures. Seizures with prominent motor manifestations include myoclonic and atonic seizures, tonic – clonic seizures, status seizures, and febrile seizures.

Risks and Diagnosis

Seizure disorders tend to be highest in children who have a positive family history of seizures. For infants and young children, a common trigger is an illness often accompanied by fever. Trauma can also precipitate a seizure.

Seizures are diagnosed by measuring brain wave patterns using an EEG. The best time to confirm a diagnosis is to run an EEG when the child is having the seizure. Brain imaging can also assist in the diagnosis of pathology such as brain malformations, but are not used to diagnose a seizure.

Mimics of Seizures

There are conditions that mimic seizures. These include sleep disorders such as parasomnias , sleep myoclonus (irregular and involuntary contractures of the muscles that occur while sleeping), and dystonias (abnormal muscle tone) that may be hypertonia, hypotonia, or mixed tone.

A syncope syndrome may also mimic a seizure. Syncope is a brief loss of consciousness that is caused by a sudden drop in blood pressure or a failure of the regular rhythm of the heart that results in a lack of oxygen to the cerebrum.

A migraine headache may also mimic a seizure. Sometimes young children will hold their breath and may even pass out. This may also include a seizure.

Movement Disorders

The most commonly identified movement disorder is cerebral palsy. Cerebral palsy is a condition that affects body movement and coordination and is not a disease. Cerebral refers to the "brain" and palsy refers to "weakness". Cerebral palsy is defined as a significant motor impairment manifesting itself as abnormalities of posture and tone. It is due to brain damage that created the abnormalities in function. The damage once done does not progress. The damage may have occurred prenatally (before birth), perinatally (during birth) or in the postnatal period. Cerebral palsy may also result from a traumatic injury. Cerebral palsy is defined by weakness, spasticity and/or hypotonia. Associated issues may include global delays, mental retardation, and oral motor dysfunction. It is often difficult to identify isolated motor involvement versus global developmental delay in younger children.

here are two types of cerebral palsy. The first involves the place where the brain injury occurs and consists of two kinds: pyramidal (involving neurons within the cerebral cortex) and extrapyramidal (involving areas outside the cerebral cortex). The terms spastic or cortical refer to pyramidal lesions, and the terms athetoid, sub-cortical or ataxic, or hypotonic refer to extrapyramidal and are interchangeable. Both types can be mixed in patients. Spastic cerebral palsy means that the child has stiffness or contractures of the muscles making movement difficult an does not go away during sleep. This is the main type of cerebral palsy affecting 70 – 80 % of persons who have the condition. Athetoid cerebral palsy refers to uncontrolled or writhing movements. Ataxic cerebral palsy is when the condition affects balance and perception.

A second type refers to the distribution of involvement. So the terms monoparesis, diparesis, triparesis, and quadriparesis refer to how many limbs are involved. The term –plegia is often incorrect and the term – paresis should be substituted. Rarely is a child completely devoid of movement which is what plegia implies.

Medical treatments for cerebral palsy sometimes include BoTox injections. Surgical treatments to assist in the relief of contractures in extreme cases are occasionally recommended.

Intervention Role of the ITDS

The ITDS may be working with neurologists and therapists as well as the primary medical provider when on the team for an infant and toddler with cerebral palsy. There are many therapeutic regimens and the ITDS is encouraged to read about various treatments. It is best practice to research specific treatments each team discusses to ensure that the efficacy of treatment is backed with scientific data.

Consider how the ITDS should provide information to families on treatment options. What should the ITDS do in this regard?

Consider what role the ITDS may have in regard to equipment use for children with movement disorders. How would he/she be involved?

Reflect on how the ITDS could be instrumental in ensuring that the child and family have opportunities to infuse interventions into everyday activities, routines and places. Can you come up with some suggestions?

Spinal Cord Problems

There are neurological conditions that directly affect the spinal cord. These include Syrinx, Disc Disease, and Transverse Myelitis.

A syrinx is associated with an Arnold-Chiari malformation in 90% of the cases. A syrinx is a fluid-filled cavity that develops in the spinal cord. It is sometimes called a syringomyelia. Thirty percent of tumors in the spine result in a syrinx. They create pressures on the cord and reduce or eliminate the sensation of pain and changes in temperature. Most commonly a syrinx occurs in the neck area, however they may also extend into the brain. This requires draining the defect and it can reoccur and need to be re-drained. Magnetic resonance imaging (MRI) is used to diagnose and follow the condition. The ITDS can assist the family to carefully check water and food temperatures and also alert the family to take particular precautions around fire for children with this condition.

Disc disease (literally, a wearing away of a disc pad between the spinal bones) is compression of a disc with resulting pressure on nerves and tissue. It may be associated with one of the orthopedic conditions, but also can damage nerves. It is unusual in children unless present from birth.

Transverse myelitis is an inflammatory process involving the spinal cord's gray and white matter that may be associated with spina bifida and other neurological disorders.


Tumors are uncontrolled cellular growth that creates abnormal masses. There are two types: Primary and Secondary. A primary tumor is located in the organ where the overgrowth of cellular tissue originated. A secondary tumor is made of cells that originated in another organ and spread (metastasized) to other locations. Most brain tumors in childhood are primary tumors that originate in nerve cells of the brain called glia cells.

Another way to consider tumors is that some are benign and some are malignant. A benign tumor grows slowly and doesn't spread to other locations. A malignant tumor spreads quickly to other areas of the body. Malignant tumors are referred to as cancer.

Clinical Signs

Some of the symptoms of brain tumors in early childhood include nausea and vomiting, headaches, changes in growth, cognition, and irritability. A brain tumor may cause other issues such as diabetes or changes in metabolism.

Diagnostic methods of confirming a brain tumor include an electroencephalogram (EEG), a computerized tomography (CT) scan, or MRI scan. After the diagnosis is made, treatment options include radiation therapy to shrink the tumor and chemotherapy. Daily care of the child undergoing treatment includes control of the nausea and vomiting and reassurance about the loss of weight and of hair.

There may be a need for short term occupational, physical, or speech therapy as treatment will destroy some of the normal brain cells. Effects of the tumor and/or of the treatment may be short or long term learning disabilities. A neurologist and/or oncologist usually follow the child to ensure that there is not a recurrence of the tumor. The primary role of the ITDS will be supporting the family in locating information and other community resources.

Peripheral Nerve Problems

There are several neurological conditions related to peripheral nerve problems that may be manifest in infants and toddlers. Most of these conditions are rare and affect many peripheral nerves. Some, however, affect isolated nerves such as a facial nerve palsy or an Erb's palsy affecting an arm and are frequently due to birth trauma.

Orthopedic Conditions and Associated Factors

Common Childhood Orthopedic Conditions

An orthopedic condition is a condition that affects the skeletal system. Examples include diseases of the muscles such as those described in Part 1 of this lesson, intrinsic disorders of the bone, joint problems, and limb problems.

The ITDS should be aware that there are several common orthopedic conditions that can affect any infant and toddler and do not result in developmental disability or delay. However, if necessary treatment is neglected, a child may experience difficulty in motor development. Some of the most common conditions include Flatfeet, Toe-Walking, Pigeon Toes, Bowlegs, and Knock-knees.

Flatfeet occur in approximately twenty percent of the population and usually do not create a problem for the child. It is considered a normal variation of human development.

Toe walking is common in young toddlers and is only a concern if it persists past the age of two and in a prolonged fashion rather than as an intermittent occurrence. If a continuous pattern of toe walking continues past the age of two years, the toddler should be evaluated to determine if the child has cerebral palsy

Pigeon toes are when the toes turn inward. Pigeon toes are also considered a normal condition of infants and toddlers who are learning to walk.

Bowed legs of an infant or toddler should be evaluated by a medical professional to determine if the child has rickets or if the tendency is one that will improve with time. Rickets is caused when the child does not get enough vitamin D. It is easily treated. Severe bowlegs may be an indicator of a more severe problem and must be evaluated by the primary medical provider who may suggest a consult with an orthopedic specialist.

Knock-knees occur as children grow and the alignment of their body changes. The primary medical provider should follow the condition and refer to a specialist if the condition is severe.

Muscle Diseases also known as Muscular Dystrophies

Some neurological disorders are related specifically to the atrophy or wasting away of the muscles due to processes in the muscles only. This is called muscular dystrophy. The two most common muscular dystrophies are Becker's and Duchenne's. The onset of Becker's type is later and the progression is slower than in Duchenne's. In both types, because of its x-linked inheritance, the incidence occurs only in males although the carrier is female. Usually, Duchenne's is diagnosed in boys ages 3 to 7 years. In a limited number of cases Duchenne's has been diagnosed in the toddler years. As a general rule, the earlier the diagnosis, the more severe and rapid the progression of the disease. Many boys who have Duchenne's are in wheelchairs by the age of ten years. Becker's, with its slower onset, is not usually diagnosed until around the age of 10 years.

The symptoms of muscular dystrophies include progressive and proximal muscle degeneration, muscle wasting, cardiomyopathy, and enlarged calves. The muscle wasting may result in scoliosis, congestive heart failure, and loss of ambulation. Treating with glucocorticosteroids sometimes prolongs the ability to ambulate.

Once the child is diagnosed, the family generally needs extensive support in dealing with grief. Mothers particularly may feel responsible, because they are carriers for the disorder, yet females themselves are protected because they have a normal "X" chromosome.

Consider how the ITDS may assist the family whose child has muscular dystrophy. What can you suggest?

Mitochrondrial Myopathies (MITO or MM)

Mitochrondrial myopathies are due to abnormal functioning of the mitochondria (energy producing cell structures) that results in muscle weakness. These myopathies have associated complications that can include seizures, sensory issues, diabetes, migraines, and cardiac disease.

Mitochondrial myopathies also referred to as MITO or MM may cause several problems in children. Problems include gastrointestinal problems that can result in inadequate nutrition. Other issues include epilepsy, drooping eyelids (ptosis) that can interfere with visual function, fatigue, and poor balance. Muscle weakness can result in respiratory problems and the child may require a ventilator to breathe. Some of the more common (though extremely rare) mitochrondrial myopathies are Kearns-Sayre syndrome, Leigh's syndrome, mitochondrial deletion syndrome (MDS), and mitochondrial encephalopathy.

As with all muscular dystrophies the main goals on an intervention plan would be to ensure

  1. full integration into the community
  2. maximization of functional capacities
  3. maintaining and prolonging function and locomotion
  4. decreasing or preventing a deformity

Anterior Horn Cell

Peripheral nerves originate in anterior horn cells that control movement. When they degenerate there are motor deficits; yet the sensory functions may still be intact. One of the most famous of the anterior horn cell degenerative conditions is Amyotrophic Lateral Sclerosis (ALS also known as Lou Gehrig's Disease). The condition usually affects individuals much later in life; however, infants and toddlers may have anterior horn cell damage related to a myelomeningocele that will affect their motor abilities. Spinal muscular atrophy or Werdnig-Hoffmann Disease also involves anterior horn cell dysfunction. It is a congenital neuromuscular disorder associated with progressive muscular atrophy, weakness and loss of motor skills. Spinal muscular atrophy types 1 and 2 are autosomal recessive genetic conditions. Both are fatal conditions; although with good medical treatment and care persons who have type 2 can survive into the third decade of life.

Polio is a viral infection of the spinal cord that affects the anterior horn cells and causes an asymmetrical ascending paralysis. Polio, once common, is now almost eradicated worldwide due to vaccination.

Motor End Plate

The motor end plate of a nerve cell sends signals from the neuron to the associated skeletal muscle. Motor end plate diseases occur when there is a failure of motor nerve impulses to cross to the muscle end plate at the neuromuscular junction. It includes such diseases as infantile botulism, toxic-metabolic disturbances, and Myasthenia Gravis.

Myasthenia Gravis is characterized by progressive fatigue and weakening of the skeletal muscles caused by impaired transmission of nerve impulses caused by an autoimmune attack on nerve cells called acetylcholine receptors. The condition is very rare in children; although it can occur. The condition may show improvement with a medicine called mestinon or immune therapy as it is an autoimmune disorder.

Muscle Diseases that Affect the Skeletal System

Muscle diseases include muscular dystrophies such as Duchenne and Becker's previously described as well as the mitochondrial myopathies.

Intrinsic Disorders of Bone

Intrinsic disorders of the bones that result in brittle bones include osteopetrosis and osteogenesis imperfecta (OI). Other causes of brittle bones are osteopenia of prematurity, medications taken for the control of seizures, and brittle bones that occur in children who are non-ambulatory. Non-ambulatory children who might have brittle bones include some who have cerebral palsy and neural tube defects.

  • Osteopetrosis is a genetic disorder. In this disorder, there is a build-up of bony tissue that results in death.
  • Achondroplasia is a genetic disorder that results in extremely short stature, large head, and short limbs. Cognition is usually not affected however, there are usually delays in motor skills. There are also medical risks for apnea, compressed spinal cord, and sometimes hydrocephalus. Professionals who often attend to this condition include a primary pediatrician, developmental pediatrician and a pediatric nutritionist.
  • Osteogenesis Imperfecta (OI) is a genetic disorder resulting in very brittle bones whereby even normal activity and pressure can result in breaks. Osteogenesis imperfecta varies from mild to very severe. In extreme cases, a child may have several bone breaks while still in utero. A cough or rolling over in bed may cause a break. In these severe cases, a family may need to put special padding on the floors of their home, eliminate or pad metal doorjambs, create roll under counters, and make numerous other modifications to protect their child. The condition is a result of either too much or too little collagen (elastic substance) in the bones. The condition may be treated with medications such as bisphosphonates and forteo to make the bones stronger.

Joint Problems

Another type of orthopedic condition is joint problems. Joint problems in toddlers include arthritis, and those acquired through maladaptive postures and movements associated with cerebral palsy, arthrogryposis, developmental hip dysplasia, and joint laxity.

  • Arthritis is an inflammatory disease of joints.
  • Arthrogryposis is a non-progressive disorder that is manifest with symptoms of joint contractures that begin prenatally with resulting muscle weakness around the involved joints.
  • Developmental Hip Dysplasia is very amenable to treatment if detected early. In layman's terms, developmental hip dysplasia is a condition where the hip bones slip in and out of their sockets. This can lead to severe orthopedic problems if not detected. Newborns are screened for the condition by physical examination, but diagnosis is often not made until later in infancy because it would be inappropriate to routinely screen newborns with MRIs and other methods that might be used with an older child. The ITDS can learn more about the early detection of developmental dysplasia of the hip and the difficulty that the primary medical provider has in making this diagnosis.
  • Joint Laxity is a looseness of the joints sometimes associated with certain syndromes such as Ehlers-Danlos syndrome. Ehlers-Danlos is a rare defect of the connective tissue that may be found in skin, muscles, joints and ligaments. The main characteristics of the syndrome are loose joints, hyperextensibility, dislocations, and fragile skin. There are ten distinct forms of the syndrome dependent on signs and symptoms (Jones, 1997). The disorder is rare, occurring in 1:10,000 individuals.

Limb Problems

Limb malformations and amputated limbs are other types of orthopedic conditions seen in infants and toddlers. A limb malformation is defined as a deformity of a limb and includes webbed fingers or toes. The malformation may be as small as a misshaped thumb or missing digits (fingers or toes) or a loss or partial loss of an arm or leg. Infants and toddlers who are born with malformed limbs often have other associated conditions, particularly if they have certain rare syndromes. A team approach to treatment is needed. The child will see an orthopedist and also specialists who make orthotic or prosthetic devices. An orthotic device is a device that increases the child's independent functioning. A prosthetic device (prosthesis) is an artificial limb. Please note that the child with an uncomplicated malformation may not qualify for Early Steps.


Some infants and toddlers may need surgical removal of all or part of a limb. This is called amputation and the child is referred to as an amputee. The child will need support of their medical team that may include a child life specialist. The child life specialist is a person who has special training and who works in the hospital to help children cope during hospitalizations and stressful events. Children need support to adapt to a body image that is changed. The family also will need support to make decisions regarding the amputation and to cope with feelings about the altered appearance of their child.

Consider how the ITDS can help families who are coping with the altered appearance of their child due to limb loss? Can you give at least one idea?

Traumatic Brain Injury

A traumatic brain injury is a trauma that is sufficient to result in a change in level of consciousness and /or anatomical abnormality. Both the neurological and the orthopedic systems may be affected dependent on the severity of the trauma. Approximately one in twenty-five children each year will have a head injury, including scalp lacerations. One in 500 children will have a significant traumatic brain injury that results in altered consciousness. Children, birth to 5 years of age, represent a high-risk group because of their continuing motor and cognitive development.

A brain trauma may be mild, moderate, or severe.

  • Mild trauma - an example of a mild head injury is a concussion. There is usually a brief loss of consciousness, confusion, or amnesia. Concrete neurological findings are generally not present and the effects of the injury are temporary. There may be a behavior change, irritability, and change in cognitive functioning, and an increase in learning problems after a concussion, but these are relatively brief in duration.
  • Moderate to severe trauma - this may result in coma. A coma usually is a sign of diffuse axonal (nerve) injury, but the coma may also be the result of a focal injury. Coma is evaluated on scales that rate eye, motor, and verbal responses.

Head injury is often local in effect, but this depends on the nature of the forces that create the injury. Inertial forces tend to cause more diffuse damage and more internal injury. Forces such as those that may occur in high-speed automobile accidents may also cause spinal cord injury, deep organ involvement, and orthopedic problems.

Child Abuse and Neglect: Reporting Requirements

Child abuse and neglect is behavior outside the norm of conduct by a caregiver and entails a substantial risk of causing physical or emotional harm to a child, including traumatic brain injury. Child abuse and/or neglect can lead to a physical or emotional disability. The ITDS needs to know the signs and symptoms of child abuse and neglect in order that appropriate reporting is made and interventions instituted.

There are three recognized types of abuse: physical, sexual, and emotional. There are four types of neglect: physical, medical, educational, and emotional. The incidence of abuse and neglect by report is an overall rate of 23/1000 children: physical abuse, 3 – 6/1000 children; sexual, 3/1000 children, and neglect, 13/1000 children. The rate is increased 5 – 10 times when parents are surveyed retrospectively.

Physical abuse in infants and toddlers may be detected by the ITDS if the child has multiple unexplained bruises, scars, cuts, welts, or burns. However, sometimes the physical signs are not evident. In these cases, withdrawn or aggressive behaviors often become the first clue to the abuse.

Shaken Baby Syndrome is one of the most common forms of physical abuse. It is a form of head trauma in an infant or young toddler that can result in death or permanent disability. This occurs when a parent or other caregiver shakes the baby so hard that the head moves in a whiplash fashion. Often this is done in an attempt to quiet the baby. Most parents and caregivers who shake their babies do not know that the shaking action causes bleeding and swelling of the brain. The ITDS can assist this educational effort by providing information to caregivers about the effects of Shaken Baby Syndrome. This may save an infant's life or prevent a disability.

Sexual abuse may occur with infants and toddlers. If the ITDS suspects that a child is being exposed to sexual contact, activity, or behavior that is inappropriate for the child's age, she/he must report this to child protective services or the police.

Emotional or verbal abuse is hard to discern at an early age. Sometimes the behaviors of the child and the caregivers lend clues to the emotional abuse. A very young child may be overly passive or overly aggressive. The child may appear depressed or withdrawn. The infant or toddler may be hard to engage or may engage inappropriately with strangers; yet show little connection to their primary caregivers. The caregiver's behavior can include shouting, belittling comments to the child, lack of affection toward the child, and rejection of the child's attempts to engage. Because there are no physical signs of the abuse, emotional abuse may go untreated. If the ITDS suspects emotional abuse, the team may want to consider involving an early intervention mental health counselor or social worker as the primary provider for the child and family.

Physical Neglect: Child neglect may result in delays of physical, communicative, and cognitive development. Signs of physical neglect include malnutrition; repeated pica (eating of dirt, paint, clay, etc.), physical fatigue, and poor hygiene.

Medical Neglect: Signs of medical neglect include the persistence of treatable medical conditions such as failure to have a child immunized or provide dental care. Medical neglect can include the absence of necessary prostheses, such as eyeglasses and hearing aids, or protective gear such as helmets.

Educational Neglect: Educational neglect is the failure of caregivers to ensure appropriate instructional programs and schooling for a child.

Emotional Neglect: Emotional neglect occurs when the caregiver is not able to attend to a child's needs for love, acceptance, and esteem building. The caregiver may be unable to bond with an infant for various reasons including her/his own emotional issues. If the primary caregiver is unavailable emotionally, the team may need to explore other options to support the emotional needs of the child. The team may consider means for providing another adult caregiver in the child's life to support the child's emotional needs. The team may also want to consider a mental health counselor or licensed clinical social worker to work with the primary caregiver and the child as a dyad. (A dyad is two people who are treated together as a unit such as a caregiver and a child).

The ITDS should be aware that contributors to child neglect include parental depression, social isolation, intellectual impairments, financial problems, substance abuse, limited education, unemployment, marital stress, and mental illness. Child factors that may contribute to neglect include medical illness, developmental delay, emotional or behavioral disturbance, and a lack of fit between the temperament of the child and parent. Overall factors of abuse and neglect are poverty, lack of support systems and community resources, domestic and community violence.

All instances of suspected or observed abuse and neglect must be reported.

Pervasive Developmental Disorders

A National Dissemination Center for Children with Disabilities (NICHCY) briefing paper outlines five categories of pervasive developmental disorders (PDD) that are defined in the DSM-IV. These include:

  • Autism
  • Rett's syndrome
  • Childhood Disintegrative Disorder
  • Asperger's
  • Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS)

Intervention for these disorders targets strengths and deficit areas. Intervention is most effective when provided in the child's environment and focused on daily routines and activities. The ITDS works with the parent or other caregiver to assist them in identifying strategies and increasing skills that support the child's development.

Autism and Other Pervasive Developmental Disorders

Autism and other pervasive developmental disorders are lifelong neurological disabilities that affect a person's ability to communicate, understand language, play and socially interact with others. The first signs of developmental delays are often noted before the age of three.

The key characteristics, sometimes referred to as core deficits of autism, are those the child demonstrates. They include:

  • a disturbance in social interactions,
  • a disturbance in communication (language skills), and
  • rigid or repetitive or stereotypic behavior or thinking.

These characteristics must be present before the age of five years even if the condition is not diagnosed until a later age. Parents are usually the first to notice unusual behaviors in their child. In some cases, the parents report that their baby seemed "different" from birth. When compared to a typically developing child, a young child with autism is often less responsive to people and does not engage in many of the typical nonverbal social behaviors. Autism is classified as a developmental disability because it interferes with the typical rates and patterns of childhood development. There are diagnoses closely related to autism such as pervasive development disorder not otherwise specified (PDDNOS), Asperger's syndrome, and Rett's syndrome that are included in the category of Pervasive Developmental Disorders (PDD).

The following sections will provide a discussion of the three core deficits often recognized for the child with autism or other pervasive developmental disorders. Sometimes pervasive developmental disorders are referred to as autism spectrum disorders, but they will be referred to as pervasive developmental disorders (PDD) in this lesson.

  1. Social Interactions

    This core deficit in reciprocal social interactions is one of the hallmark features of autism or other pervasive developmental disorders. Some of these social differences include a lack of showing, pointing or following objects, a lack of spontaneous seeking to share enjoyment with their caregiver, being non-responsive to their name, and poor to non-existent eye-contact. Children with pervasive developmental disorders such as autism may resist attention or passively accept hugs and cuddling. They may not seek comfort from others. The young child with autism often prefers to be left alone or to gaze at favorite objects for extended periods of time. To parents, it may seem as if their child is not bonding with them. Parents may feel crushed by this.

    Children with a pervasive developmental disorder such as autism do not understand social cues, such as tone of voice or facial expressions and have difficulty interpreting what others are thinking or feeling. They may initially appear to develop typically and then begin to withdraw or become indifferent to social interactions at age two or three.

  2. Communication

    Verbal and nonverbal communication is another core area of concern for children with a pervasive developmental disorder such as autism. Specifically, children with autism usually demonstrate a delay in, or total lack of, spoken language, and may refer to themselves by their name instead of "I" or "me." If they possess language, they usually demonstrate an inability to initiate or sustain even a simple conversation. They may engage in stereotypical or repetitive use of language such as immediate or delayed echolalia or use words in an idiosyncratic manner.

    Some children demonstrate unusual prosody such as speaking in a stiff, nasal, jerky or sing-song tone of voice. Their range of favorite topics is often very restricted, with little regard for the interests of the other person. While it can be hard to understand what children with autism are saying, their body language is also difficult to understand. Facial expressions, movements, and gestures rarely match what the child with autism is saying. Without meaningful gestures or language, children with autism are at a loss to let others know what they need. As a result, they may simply scream or grab what they want.

  3. Behavior

    Restricted and repetitive behaviors or interests are the third, and final, core deficit area for children with autism. Many children with autism engage in repetitive movements or posturing such as rocking or twirling, hand or finger-flapping and toe-walking. Some may also engage in self-abusive behaviors such as biting or head-banging.

    Young children with autism may demonstrate an inability to play with a variety of toys or will use the toys in non-functional or unconventional ways, such as lining up objects or spinning the wheels on a car rather than rolling it along the floor. Children with autism also have difficulty with the concept of fantasy or make-believe play and they are unable to play interactively with other children. Finally, children with autism often demonstrate an inflexible adherence to specific, nonfunctional routines and rituals and will become extremely upset if these routines or rituals are not strictly followed.

Sensory Concerns

In addition to the core deficit areas described above, many children with autism have a reduced sensitivity to pain, but are hyper sensitive to sensations such as sound, touch, or other sensory stimulation. These different sensitivities may contribute to behavioral symptoms such as a resistance to cuddling or hugging. A child with autism may fall and break an arm, yet never cry. Another may bash his head against a wall and not wince, but a light touch may make the child scream with alarm.

Each of the symptoms within the three core deficit areas, as well as the sensory issues, range on a continuum from mild to severe and will present differently in each child. However, all children with autism will display communication, social, and behavioral deficits to some degree.

Specific Intervention Strategies for Autism

There is no single "best treatment" for every child with autism. One point, on which most professionals agree, is the importance of early intervention. Another is that most individuals with autism respond well to highly structured, specialized programs.

The following are examples of a few intervention strategies proven to be effective for children with autism.

Positive Behavior Support

Positive Behavior Support (PBS) is a process for understanding and resolving the problem behavior of children that is based on values and empirical research. It offers an approach for developing an understanding of why the child engages in problem behavior and strategies for preventing the occurrence of problem behavior while teaching the child new skills. Positive behavior support offers a holistic approach that considers all factors that impact on a child and the child's behavior. It can be used to address problem behaviors that range from aggression, tantrums, and property destruction to social withdrawal. PBS contains the following components:

  • Behavior Hypothesis Statements - Statements that include a description of the behavior; triggers or antecedents for the behavior, maintaining consequences, and purpose of the problem behavior.
  • Prevention Strategies - Strategies that may be used to reduce the likelihood the child will have problem behavior. These may include environmental arrangements, personal support, and changes in activity; new ways to prompt a child, changes in expectations, etc
  • Replacement Skills - Skills that will replace the problem behavior.
  • Consequence Strategies - Guidelines for how adults will respond to problem behaviors in ways that will not maintain the behavior. In addition, this part of the plan may include positive reinforcement strategies for promoting the child's use of new skills or appropriate behavior
  • Long Term Strategies - Includes strategies that will assist the child and family in meeting their long-term goals.

Applied Behavior Analysis

Applied behavior analysis (ABA) has become widely accepted as an effective treatment strategy for children with autism. Many years of research demonstrate the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones. An effective treatment program will build on the child's strengths and interests. It will offer a predictable schedule, teach tasks as a series of simple steps, actively engage the child's attention in highly structured activities, and provide regular reinforcement of behavior.

Parental involvement has emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that parents are the child's earliest teachers, more programs are beginning to offer training to parents so they may continue the therapy at home.

Effective programs will teach early communication and social interaction skills. In children younger than 3 years, appropriate interventions usually take place in the home or a child care center. These interventions target specific deficits in learning, language, imitation, attention, motivation, compliance, and initiative of interaction.

Visual Supports and Environmental Strategies

Visual tools and supports help create an environment that is predictable and understandable to the child with autism. This will make communication, social, and behavioral difficulties less likely to occur. The purpose of using these aids is to enhance the child's understanding of what is happening and what is expected. Although the primary purpose of these tools is to support communication, they are also used to give information, provide structure, etc.

Children with autism tend to be visual learners living in a very auditory world. Visual supports focus on the strength of the child. Thus children with autism often learn more if the ITDS and caregivers use visual rather than auditory teaching strategies. These techniques work for verbal, as well as non-verbal, children. Implementing a system of visual tools and supports significantly reduces various behavior problems and increases effective communication and interactions. Some examples of visual supports and environmental strategies include daily activity schedules, task analysis visual aids, checklists, mini-schedules, choice boards, and 'First-Then' choice boards.

Integrated Play Groups

Integrated play groups, first developed by Pamela Wolfberg (1987, 2004), are an effective means for teaching appropriate social interactions and play skills with peers. During the process of functional play groups, the adult mirrors the child's play and directly teaches play imitations with the toys. The situations are highly structured to assure attending and practice, using carefully planned themes and materials. Other strategies within the realm of functional play might include Pivotal Response Training (PRT) and Incidental Teaching.

Social Skill Strategies

Strategies for teaching and enhancing social skills have been found to be effective for some children. One of the best strategies to teach social skills is through the use of Social Stories, which were developed by Carol Gray (1996, 2004). These scenarios describe social situations along with their relevant social cues. Social Stories provide information on what is occurring and why. They explain the perspective and experiences or behavior of others. Power Cards, developed by Elisa Gagnon (2001), are another social skill strategy. These consist of small, visual aids that use the child's special or unique interest to motivate and teach appropriate social interactions. A final strategy is the use of visual scripts. These clarify choices in social situations, provide an actual 'script' of upcoming events or conversations and reduce the child's anxiety by assisting with conversation starters.


Autism can be complex, severe and frightening. But, it is not hopeless. With the help of good intervention and services, many individuals with autism can make excellent progress and achieve integration within their community.

Miscellaneous Medical Conditions

Sickle Cell Disease

Sickle Cell Disease is the most common genetic cause of a structural abnormality of hemoglobin, producing anemia in people of African and Caribbean descent. The disease causes an amino acid substitution during synthesis of food thus resulting in abnormal hemoglobin in the blood stream.

Although newborns with sickle cell disease appear to be normal at birth, by 4 to 6 months of age, the infants become anemic and some of their red blood cells appear to have a sickle shape rather than the nicely rounded edges of normal red blood cells. The sickled cells can cause vasoocclusion (blockages in the blood vessels). The infants show signs of swelling in their digits (fingers and toes) that is quite painful, and enlarged organs (organomegaly). These young children are at risk for overwhelming infections but, when detected, can be protected against certain bacterial organisms with antibiotic prophylaxis, and vaccination.

The vasoocclusion can cause local tissue hypoxia (lack of oxygen), and at times ischemia (disruption of blood flow in any area of the body that can lead to tissue death) and infarction (rupture of a blood vessel that prevents blood flow and can lead to tissue death). Infarction produces pain in the form of vasoocclusive crises, especially in the extremities. A person who has sickle cell disease is prone to leg ulcers later in life. The kidneys can have infarction resulting in blood in the urine. An infarction in the brain may result in a stroke. This is a devastating complication for children. Retinopathy with resulting visual loss can occur; though this is rare in young children.

An occlusion may occur in the gastro-intestinal tract and cause severe pain. An excessive breakdown of the red blood cells leads to "bilirubin" gallstones. This condition contributes to hepatomegaly (enlarged liver) and also enlarged spleen. The liver is also enlarged because more red cells are produced.

The spleen becomes enlarged early in the disease, but as time goes on, the spleen quits functioning due to infarctions and shrinks. With a nonfunctioning spleen, the child becomes very susceptible to bacterial infections that are very resistant to antibiotics. Very rarely, the spleen will fill itself with a large quantity of circulating blood in a condition known as a "sequestration" crisis. This results in shock and the child requires immediate resuscitation.

Usually, the sickle cell disease is detected with newborn screening for abnormal hemoglobin. Early identification assists in the early planning for medical management and genetic counseling.

Clotting Disorders

Severe problems with bleeding do not occur with every child with a clotting disorder. However, in the most widely known clotting disorder, hemophilia A (Factor VIII deficiency), bleeding can occur several times a month, and require visits to the hospital or acute care clinic for clotting factor therapy.

A major issue for a child who has a clotting disorder is trauma. Trauma can produce major bleeding into the joints (hemarthroses). When the blood is reabsorbed, the joint lining is broken down and this leads to joint degeneration. Movement becomes painful and limited. Rehabilitation is uncomfortable, but necessary to prevent further debilitation.

Bleeds into the brain can destroy both gray and white matter. There is an increased risk of seizures leading to an increased incidence of learning difficulties.

The use of blood derived products for the treatment of hemophilia brings with it the risk of infections such as hepatitis B, hepatitis C, and Human Immuneodeficiency Virus (HIV). This is a major concern for both parents and other caregivers.

Parents and caregivers must be constantly vigilant to safeguard the young child from injury. It is hard for parents to allow their children with hemophilia to be independent. Parents and caregivers must be aware that the use of corporal punishment or even grabbing a child's hand can result in a bleed.

Consider how the ITDS can help the family of a child with a clotting disorder. Name at least two ways.

Immune Deficiency and HIV

To understand immune deficiency, the ITDS must first understand immunity. Immunity involves cellular and chemical elements. The mark of a healthy immune system is the ability of the body to respond to foreign material through the process of inflammation.

The signs of inflammation are: redness (rubor), heat (calor), pain or tenderness (dolor), swelling (tumor), and functio laesa (loss of function). These inflammatory symptoms are present in the blood vessels or adjacent tissues when a foreign agent is introduced into the body or when an injury to the body has occurred. The process of inflammation is part of a healthy body's natural protection and repair mechanism. In this process, cellular elements, such as white blood cells in the blood stream and tissues, and chemical elements, such as immunoglobulins, work to repair and protect the affected area. Immunoglobulins produce antibodies that are part of the body's natural defense against infection.

Pathophysiology is when the body's natural immune processes are not working properly. The processes may be out of balance and the immune system overreacts (autoimmune) and actually fights its own cells or certain elements are missing or lacking (immune deficiency) and the body cannot fight infection. Immune deficiencies include allergies, cancers, and isolated blood disorders. Many of the conditions are genetic in origin.

Unlike the genetic immune deficiencies, human immunodeficiency virus or HIV infection is an acquired immunodeficiency. Millions of people have been infected with HIV worldwide. There are approximately 1.4 million children infected and about 34 million adults. Perinatal transmission (vertical transmission from mother to baby during the birth process) accounts for 90% of HIV infections in children. The risk of perinatal transmission drops from 25% to 1- 2 % with proper medical care in both the prenatal and postnatal period. Screening of pregnant women is essential.

There are measures that significantly reduce the risk of the baby becoming infected from a mother who has HIV. Pretreatment of both the mother and the baby with a drug known as AZT before and after delivery greatly reduce the risk of infection in the infant. Proper nutrition is of paramount importance to assist in fighting off infection. HIV in children is identified by 1 month of age or excluded by 6 months of age with final confirmation of exclusion by 18 months of age.

Consider interventions that the medical and developmental team are aware of when treating a child with HIV. Remember that the ITDS will be working with doctors, nurses, and social workers.

Consider the most important intervention that all team members must remember when providing care for a child with HIV in order to reduce the risk of infection.


Cancer is the result of a failure of the body to regulate cell production. The result is a proliferation of abnormal cells in abnormal numbers and places. In the United States, there are 8,000 - 9,000 children diagnosed with cancer each year.

Common sites for cancers in children include muscle and bone (sarcomas), blood (leukemias), lymph nodes (lymphomas), the brain and nervous system (neuroblastomas), the kidneys (renal tumors), the eyes, and other soft tissues. A cancer may be diagnosed by the presence of a mass lesion or by the symptoms that are associated with the lesion. For example, a bone lesion may cause bone pain and limping as the first symptoms. Cancers of the blood may manifest through unexplained bleeding, bruising, or pallor. Cancers of the brain and/or central nervous system may cause headaches and vomiting. Kidney (renal) cancers may result in blood in the urine, pallor, and urinary tract obstruction.

There may be swelling of the affected part of the body such as the face or neck when the cancer is present in soft tissue. There may also be obstructions in the airway. Cancers of the eye may first be detected seeing what appears to be a white spot on the pupil. Non-specific symptoms can include weight loss, diarrhea, low-grade fevers, malaise, and failure to thrive.

Cancer Treatments

Treatment of the child's cancer is overseen by a pediatric oncologist, a doctor who is a specialist in cancers, together with the child's primary medical doctor. Treatments can include surgery, chemotherapy, radiation therapy, bone marrow or blood stem cell transplants, and immunotherapy. Treatment is determined by three factors:

  • type of cancer,
  • extent of the disease at the time of diagnosis, and
  • balance of the efficacy of the treatment with the toxicity associated with the treatment.

Purposes of surgery include obtaining a specimen to determine the extent of the disease and to specify the type of cancer, removing the tumor mass to relieve symptoms, and inserting intravenous lines. The purpose of chemotherapy is to interrupt the cell cycle of proliferation of the abnormal cells while also minimizing the damage to normal cells. Most of the commonly used chemotherapeutic agents interrupt the cell cycle and cause breakage to the DNA strands to interrupt cell division. Often chemotherapy and radiation therapy are used in combination.

Transplantation is used to assist the body to grow more normal cells while reducing the number of abnormal cells. Immunotherapy is the administration of medicines that use the immune system to fight the cancer.

What family issues should the ITDS remember when working with a family of a child who is undergoing treatment for cancer?

What important information should the ITDS remember about the prognosis for children who have various forms of cancers?

Congenital Heart Disease

The normal heart has four chambers that pump oxygenated blood from the lungs to all parts of the body and return blood that contains carbon dioxide from the tissues back to the lungs for excretion. This process is necessary for cell maintenance and repair.

Infants may be born with a defect of the heart. Some common defects include a Ventricular Septal Defect (VSD), Patent Ductus Arteriosus (PDA), Tetralogy of Fallot, coarctation of the aorta, Atrial Septal Defect (ASD), pulmonary stenosis, transposition of the great arteries, and hypoplastic left heart syndrome. Less common is a defect where an infant is born with only two or three chambers in the heart rather than four.

The following few sections will provide a detailed discussion of defects of the heart. The ITDS needs basic information about these conditions.

  • Endocardial Cushion Defect (Atrioventricular or A-V Canal Defect) is a large hole in the center of the heart where the wall between the upper chambers join the lower chambers. The defect also involves the heart valves. Instead of two separate valves, there is a single valve. The defect causes a mixing of oxygenated blood with un-oxygenated blood. Blood is pumped back into the body without an adequate supply of oxygen. The condition may result in high blood pressure and heart value regurgitation (blood leaking backward from the lower to the upper chambers).

    Infants with this condition, which is common in Down syndrome, usually have an enlarged heart. They breathe rapidly and have upper respiratory infections. They tend to have poor appetites and are undernourished. Surgery is required to correct the defect. Even after sugery, the child needs to be followed by a cardiologist. A child with an erndocardial cushion defect needs prophylactic antibiotics prior to dental work to prevent infection.

  • Ventricular Septal Defect (VSD) is the most common heart lesion. This is a hole in the wall between the ventricles, the two bottom pumping chambers. Some occur in isolation and some occur in combination with other conditions. VSDs usually do not present symptoms at birth. If the defect is large, it can result in congestive heart failure by 6 - 8 weeks of age because the blood is shunted from the left to the right ventricle producing an overload on the right side of the heart. The condition can result in a failure of the heart to pump enough blood into the tissues. Fluid becomes backed up in the heart and also into the lungs causing difficulty breathing.

    Many small VSDs spontaneously close and only present with a murmur. Moderate to large defects may need surgical correction. However, non-invasive procedures for repair are more often used today including "stents" and "umbrella patches". If treated promptly, there is minimal to no long-term sequalae. Infants are the most ill when they are very young and must be under the care of a pediatric cardiologist who will assist the family with nutrition and monitor appropriate activity levels.

  • What medical professions will be available to the ITDS for consultation when the ITDS is working with a child who has VSD?

    When should developmental stimulation activities be initiated by the ITDS for a child who has a VSD?

  • Patent Ductus is the persistent patency of the blood vessel connecting the aorta and the pulmonary artery that normally closes at birth. However, for some infants it remains open and can cause congestive heart failure. A medicine, indomethacin, may be used to facilitate the closing of the patent ductus. If the defect does not respond to this medicine, then surgery may be required and usually effectively corrects the problem.
  • Tetralogy of Fallot is a combination of four lesions: a VSD, pulmonary stenosis, an overriding aortic valve, and right ventricular hypertrophy. The condition causes cyanosis (blueness due to lack of oxygen in the tissues). The infant might need a shunt to improve oxygenation. Other surgery to repair the defect is delayed until the infant is a little older.
  • What considerations for intervention would the ITDS need to consider for a child who has a Tetralogy of Fallot?

  • Coarctation of the Aorta or narrowing of the aorta, when present in combination with other heart problems or when severe can present in the newborn period with cyanosis and heart failure. However, it usually presents later with a murmur and discrepant blood pressures when the blood pressure is taken in both arms and legs of the child. The condition causes hypertension. Surgical repair is determined based on the location of the lesion and whether or not other anomalous structures are present.
  • Atrial Septal Defects (ASD) often go undiagnosed because everyone is born with a small opening between the two upper chambers of the heart, a patent foramen ovale that closes right after birth when the patent ductus closes. However, some reopen or stay open. In addition, there can be defects in other places in the atrial septum (between the two top chambers of the heart). These defects can usually be closed with a procedure called an "umbrella" patch.
  • Pulmonary Stenosis is a narrowing of the pulmonary valve. This valve allows blood to flow from the right ventricle of the heart to the pulmonary artery so that the body's blood can be re-oxygenated. When the opening is too narrow, the body does not receive enough oxygenated blood to maintain cellular function. Pulmonary stenosis is a congenital defect and can often be corrected with surgery. Severe pulmonary stenosis causes a child to be very ill.
  • Transposition of the Great Arteries is when the aorta and the pulmonary artery come out of the wrong ventricles of the heart. The blood that is returned to the body is not re-oxygenated and the baby appears very blue. The oxygenated blood that should go to the body is returned to the lungs. The baby is given a medicine called “prostaglandin” to keep the ductus open so that the body receives at least a small mixture of oxygenated blood with the blood that is pumped from the heart. Surgery is required to correct the defect.
  • Hypoplastic Left Heart Syndrome is very rare, but is very serious. The whole left side of the heart is underdeveloped. This includes the aorta, the aortic valve, the left ventricle and the mitral valve. An infant who has this rare condition often dies in the first week of life. The treatment for the condition is a heart transplant. BBS Approved Continuing Education Course, Developmental Issues From Infancy to Old Age, Online Course to Board of Behavioral Science Requirement for licensure and prelicensure.

Some heart defects are treated with patching, a micro-surgical procedure that has reduced the risk to a child for open-heart surgery. However, open-heart surgery is still required in some circumstances. For a very small number of children, the only option for treatment is a heart transplant.



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