Impact of Cognitive or Sensory Impairment on the Child and Family

 Infection and intoxication, such as congenital rubella, syphilis, maternal drug consumption (e.g., fetal alcohol syndrome), chronic lead ingestion, or kernicterus

 Trauma or physical agent (i.e., injury to the brain suffered during the prenatal, perinatal, or postnatal period)

 Inadequate nutrition and metabolic disorders, such as phenylketonuria or congenital hypothyroidism

 Gross postnatal brain disease, such as neurofibromatosis and tuberous sclerosis

 Unknown prenatal influence, including cerebral and cranial malformations, such as microcephaly and hydrocephalus

 Chromosomal abnormalities resulting from radiation; viruses; chemicals; parental age; and genetic mutations, such as Down syndrome and fragile X syndrome

 Gestational disorders, including prematurity, low birth weight, and postmaturity

 Psychiatric disorders that have their onset during the child’s developmental period up to age 18 years, such as autism spectrum disorders

 Environmental influences, including evidence of a deprived environment associated with a history of intellectual disability among parents and siblings

Educate Child and Family.: To teach children with CI, it is necessary to investigate their learning abilities and deficits. This is important for the nurse who may be involved in a home care program or who may be caring for the child in a health care setting. The nurse who understands how these children learn can effectively teach them basic skills or prepare them for various health-related procedures.

Children with CI have a marked deficit in their ability to discriminate between two or more stimuli because of difficulty in recognizing the relevance of specific cues. However, these children can learn to discriminate if the cues are presented in an exaggerated, concrete form and if all extraneous stimuli are eliminated. For example, the use of colors to emphasize visual cues or the use of singing or rhymes to stress auditory cues can help them learn. Their deficit in discrimination also implies that concrete ideas are learned much more effectively than abstract ideas. Therefore demonstration is preferable to verbal explanation, and learning should be directed toward mastering a skill rather than understanding the scientific principles underlying a procedure.

Another cognitive deficit is in short-term memory. Whereas children of average intelligence can remember several words, numbers, or directions at one time, children with CI are less able to do so. Therefore they need simple, one-step directions. Learning through a step-by-step process requires a task analysis, in which each task is separated into its necessary components and each step is taught completely before proceeding to the next activity.

One critical area of learning that has had a tremendous impact on education for cognitively impaired individuals is motivation. Programs based on the motivational principles of behavior modification, employing positive reinforcement for specific tasks or behaviors, have demonstrated marked improvement in children’s ability to learn. Advances in technology have greatly aided in providing reinforcement, especially in children who are severely disabled and who may have physical disabilities that limit their range of capabilities. For example, with the use of specially designed switches, children are given control of some event in the environment, such as turning on the television (Fig. 19-1). The television picture becomes reinforcement for activating the switch. Repetitive use of these switches provides an early, simplistic association with a technical device that may progress to increasingly complex aids.

Early intervention program is a systematic program of therapy, exercises, and activities designed to address developmental delays in disabled children to help achieve their full potentials (American Academy of Pediatrics, 2001; National Down Syndrome Society, 2006). There is considerable evidence that these programs are valuable for cognitively impaired children. Nurses working with these families need to be aware of the types of programs in their community. Under the Individuals with Disabilities Education Act (IDEA) of 1990 (Public Law 101–476), states are encouraged to provide full early intervention services and are required to provide educational opportunities for all children with disabilities from birth to 21 years of age. Services may be provided under statePrograms for Children with Special Health Needs or Head Start, or by private organizations such as National Down Syndrome Society,^* Easter Seals,† or the Arc of the United States.‡ Parents should inquire about these programs by contacting the appropriate agencies. The child’s education should begin as soon as possible. As children grow older, their education should be directed toward vocational training that prepares them for as independent a lifestyle as possible within their scope of abilities.

Teach Child Self-Care Skills.: When a child with CI is born, parents need assistance in promoting normal developmental skills that are almost automatically learned by other children. These include self-care skills such as feeding, toileting, dressing, and grooming. Teaching these skills requires a basic knowledge of the developmental sequence in learning the skills demonstrated by children of average intelligence. For example, children with subaverage intelligence would not be expected to dress themselves as early as unaffected youngsters.

Teaching self-care skills also necessitates a working knowledge of the individual steps needed to master a skill. For example, before beginning a self-feeding program, the nurse performs a task analysis. After a task analysis, the child is observed in a particular situation, such as eating, to determine what skills are possessed and the child’s developmental readiness to learn the task. Family members are included in this process because their “readiness” is as important as the child’s. Numerous self-help aids are available to facilitate independence and can help eliminate some of the difficulties of learning, such as using a plate with suction cups to prevent accidental spills.§

Promote Child’s Optimal Development.: Optimal development involves more than achieving independence. It requires appropriate guidance for establishing acceptable social behavior and personal feelings of self-esteem, worth, and security. These attributes are not simply learned through a stimulation program. Rather, they must arise from the genuine love and caring that exist among family members. However, families need guidance in providing an environment that fosters optimal development. Often it is the nurse who can provide assistance in these areas of childrearing.

Another important area for promoting optimal development and self-esteem is ensuring the child’s physical well-being. Any congenital defects, such as cardiac, gastrointestinal, or orthopedic anomalies, should be repaired. Plastic surgery may be considered when the child’s appearance can be substantially improved. Dental health is significant, and orthodontic and restorative procedures can improve facial appearance immensely.

Encourage Play and Exercise.: Children who are cognitively impaired have the same needs for recreation and exercise as other children. However, because of the children’s slower development, parents may be less aware of the need to provide such activities. Therefore the nurse guides parents toward selection of suitable play and exercise activities. Because play has been discussed for children in each age-group in earlier chapters, only the exceptions are presented here (Fig. 19-2).

The type of play is based on the child’s developmental age, although the need for sensorimotor play may be prolonged for several years. Parents should use every opportunity to expose the child to as many different sounds, sights, and sensations as possible. Appropriate play includes musical mobiles, stuffed toys, water play, floating toys, a rocking chair or horse, a swing, bells, and rattles. The child should be taken on outings, such as trips to the grocery store or shopping center; other people should be encouraged to visit in the home; and the child should be related to directly, such as by cuddling, holding, rocking, talking to the child in the en face (face-to-face) position, and giving “rides” on the parents’ shoulders.

Toys are selected for their recreational and educational value. For example, a large inflatable beach ball is a good water toy; it encourages interactive play and can be used to learn motor skills, such as balance, rocking, kicking, and throwing. A doll with removable clothes and different types of closures can help the child learn dressing skills. Musical toys that mimic animal sounds or respond with social phrases are excellent ways of encouraging speech. Toys should be simple in design so that the child can learn to manipulate them without help. For children with severe cognitive and physical impairment, electronic switches can be used to allow them to operate toys (Fig. 19-3).

Suitable activities for physical activity are based on the child’s size, coordination, physical fitness and maturity, motivation, and health (Fig. 19-4). Some children may have physical problems that prevent participation in certain sports, suchas atlantoaxial instability in children with Down syndrome (p. 619). These children often have greater success in individual and dual sports than in team sports and enjoy themselves most with children of the same developmental level. The Special Olympics^* provides these children with a unique competitive opportunity.

Safety is a major consideration in selecting recreational and exercise activities. For example, toys that may be appropriate developmentally may present dangers to a child who is strong enough to break them or use them incorrectly.

Provide Means of Communication.: Verbal skills are typically delayed more than other physical skills. Speech requires hearing and interpretation (receptive skills) and facial muscle coordination (expressive skills). Because both types of skills may be impaired, these children need frequent audiometric testing and should be fitted with hearing aids if indicated. In addition, they may need help in learning to control their facial muscles. For example, some children may need tongue exercises to correct the tongue thrust or gentle reminders to keep the lips closed.

Nonverbal communication may be appropriate for some of these children, and various devices are available. For the child without associated physical disabilities, a talking picture board is helpful. For children with physical limitations, several adaptations or types of communication devices are available to facilitate selection of the appropriate picture or word (Fig. 19-5). Some children may be taught sign language or Blissymbols—a highly stylized system of graphic symbols that represent words, ideas, and concepts. Although the symbols require education to learn their meaning, no reading skill is needed. The symbols are usually arranged on a board, and the person points or uses some type of selector to convey a message.

Establish Discipline.: Discipline must begin early. Limit-setting measures need to be simple, consistently applied, and appropriate for the child’s mental age. Control measures are based primarily on teaching a specific behavior rather than on understanding the reasons behind it. Stressing moral lessons is of little value to a child who lacks the cognitive skills to learn from self-criticism or from a lesson based on previous wrong-doing. Behavior modification, especially reinforcement of desired actions, and time-out are appropriate forms of behavior control.

Encourage Socialization.: Acquiring social skills is a complex task, as is learning self-care procedures. Active rehearsal with role-playing and practice sessions and positive reinforcement for desired behavior have been the most successful approaches. Parents should be encouraged early to teach their child socially acceptable behavior: waving goodbye, saying “hello” and “thank you,” responding to his or her name, greeting visitors, and sitting modestly. The teaching of socially acceptable sexual behavior is especially important to minimize sexual exploitation. Parents also need to expose the child to strangers so that he or she can practice manners, since there is no automatic transfer of learning from one situation to another.

Dressing and grooming are also important aspects of socialization. A child who is dressed in age-appropriate clothing and is well groomed is much more likely to be accepted and to develop good self-esteem. Clothes should be clean, up-to-date, and well fitted. Many attractive outfits can be adapted with self-adhering fasteners and elastic openings to facilitate self-dressing.

As soon as possible, parents should enroll the child in appropriate preschool programs. Not only do these programs provide education and training, but they also offer an opportunity for social experiences among the children. As children grow older, they should have peer experiences similar to those of other children, including group outings, sports, and organized activities such as scouts and Special Olympics. Nurses can assess the child’s abilities and encourage others (e.g., parents, teachers) to promote developmentally appropriate peer interaction (Johnson and Walker, 2006; Rehm and Bradley, 2006).

Provide Information on Sexuality.: Adolescence may be a particularly difficult time for the family, especially in terms of the child’s sexual behavior, possibility of pregnancy, future plans to marry, and ability to be independent. Frequently, little anticipatory guidance has been offered parents to prepare the child for physical and sexual maturation. The nurse can help in this area by providing parents with information about sexuality education that is geared to the child’s developmental level. For example, the adolescent girl needs a simple explanation of menstruation and instructions on personal hygiene during the menstrual cycle.

These adolescents also need practical sexual information regarding anatomy, physical development, and conception.^* Because of their easy persuasion and lack of judgment, they need a well-defined, concrete code of conduct. The subtleties of social sexual behavior are less beneficial than specific instructions for handling certain situations. For example, an adolescent should be firmly told never to go alone anywhere with any person she does not know well. To protect him or her from abusive sexual activities, parents must closely observe their teenager’s activities and associates. The question of contraceptive protection for these adolescents is often a parental concern.

Parents of these adolescents are often concerned about the advisability of marriage between two individuals with an intellectual disability. There is no conclusive answer; each situation must be judged individually. In some instances marriage is possible, but parenthood may not be desirable because of the complexity of childrearing and the potential problem of perpetuating mental deficiency. The nurse should discuss this topic with parents and with the prospective couple, stressing suitable living accommodations and contraceptive methods to prevent pregnancy. If children are conceived, these parents require specialized assistance in learning to meet the needs of their offspring (Johnson and Walker, 2006).

Help Family Adjust to Future Care.: Not all families are able to cope with home care of their affected child, especially one who is severely or profoundly impaired or has multiple disabilities. Older parents may not be able to assume care responsibilities after they reach retirement or older age. For these parents, the decision regarding residential placement is a difficult one, and the availability of such facilities varies widely. The nurse working with a family should help them investigate and evaluate various programs, in addition to assisting them in adjusting to the decision for placement.

Care for Child During Hospitalization.: Caring for the child during hospitalization can be a special challenge. Frequently, nurses are unfamiliar with children who are cognitively impaired, and they may cope with their feelings of insecurity and fear by ignoring or isolating the child. Not only is this approach nonsupportive, but it may also be destructive for the child’s sense of self-esteem and optimal development, and it may hamper the parents’ ability to cope with the stress of the experience. One method that successfully avoids this nontherapeutic approach is the use of the mutual participation model in planning the child’s care. Parents are encouraged to stay with their child but should not be made to feel as if the responsibility is totally theirs.

When the child is admitted, a detailed history is taken (see Chapter 21), especially in terms of all self-care activity. During the interview the child’s developmental age is assessed. It is best to avoid asking directly about IQ levels, since this may make the parents uncomfortable and often tells little about the child’s actual abilities. Questions are approached positively. For example, rather than asking, “Is your child toilet trained yet?” the nurse may state, “Tell me about your child’s toileting habits.” The assessment should also focus on any special devices the child uses, effective measures of limit setting, unusual or favorite routines, and any behaviors that may require intervention. If the parent states that the child engages in self-injurious activities (such as head banging or self-biting), the nurse should inquire about events that precipitate them and techniques that the parents use to manage them (Bosch and Ringdahl, 2001;Walker and Johnson, 2006).

The nurse also assesses the child’s functional level of eating and playing; ability to express needs verbally; progress in toilet training; and relationship with objects, toys, and other children. The child is encouraged to be as independent as possible in the hospital.

Realizing that the child may be lonely in the hospital, the nurse makes certain that toys and other activities are provided. The child is placed in a room with other children of approximately the same developmental age, preferably a room with only two beds to avoid overstimulation. The nurse discusses with the other parents the child’s abilities and introduces the parents and children to each other. By the nurse’s example of treating the child with dignity and respect, others who may be fearful of what they do not understand are encouraged to accept the child.

Procedures are explained to the child through methods of communication that are at the appropriate cognitive level. Generally, explanations should be simple, short, and concrete, emphasizing what the child will experience physically. Demonstration either through actual practice or with visual aids is always preferable to verbal explanation. The nurse repeats instructions often and evaluates the child’s understanding by asking questions such as “What will it feel like?” “Show me how you must lie,” or “Where will the dressing be?” Parents are included in preprocedural teaching for their own learning and to help the nurse learn effective methods of communicating with the child.

During hospitalization the nurse should also focus on growth-promoting experiences for the child. For example, hospitalization may be an excellent opportunity to emphasize to parents abilities that the child does have but has not had the opportunity to practice, such as self-dressing. It may also be an opportunity for social experiences with peers, group play, or new educational and recreational activities. For example, one child who had the habit of screaming and kicking demonstrated a definite decrease in those behaviors after he learned to pound pegs and use a punching bag. Through social services the parents may become aware of specialized programs for the child. Hospitalization may also offer parents a respite from everyday care responsibilities and an opportunity to discuss their feelings with a concerned professional.

Assist in Measures to Prevent Cognitive Impairment: Besides having a responsibility to families with a child with CI, nurses also need to be involved in programs aimed at preventing CI. Many of the familial, social, and environmental factors known to cause mild impairment are preventable. Counseling and education can reduce or eliminate such factors (e.g., poor nutrition, cigarette smoking, chemical abuse), which increase the risk of prematurity and intrauterine growth restriction. Interventions are directed toward improving maternal health by educating women regarding the dangers of chemicals, including prenatal alcohol exposure, which affects organogenesis, craniofacial development, and cognitive ability (Wilton and Plane, 2006). Other preventive strategies that play an important role include adequate prenatal care; optimal medical care of high-risk newborns; rubella immunization; genetic counseling and prenatal screening, especially in terms of Down or fragile X syndrome; use of folic acid supplements to prevent neural tube defects during pregnancy and during the childbearing years; newborn screening for treatable inborn errors of metabolism, such as congenital hypothyroidism, phenylketonuria, and galactosemia; and early appropriate therapies and rehabilitation services for children with developmental disabilities.

Prognosis.: Life expectancy for those with Down syndrome has improved in recent years but remains lower than for the general population. More than 80% survive to age 55 years and beyond. As the prognosis continues to improve for these individuals, it will be important to provide for their long-term health care, social, and leisure needs (National Down Syndrome Society, 2006; Van Riper, 2003). (See Ethical Case Study.)

Support Family at Time of Diagnosis.: Because of the unique physical characteristics, the infant with Down syndrome is usually diagnosed at birth, and parents should be informed of the diagnosis at this time. Parents usually prefer that both of them be present during the informing interview so that they can support one another emotionally. They appreciate receiving reading material about the syndrome^* and being referred to others for help or advice, such as parent groups or professional counseling.

After parents are aware of the diagnosis, they are confronted with the crisis of losing their perfect or dream child and grieving for and accepting their reality child. Consequently, the parents’ responses to the child may greatly influence decisions regarding future care. Whereas some families willingly take the child home, others consider immediate residential placement. The nurse must carefully answer questions regarding developmental potential. Institutionalization is no longer an option. For families unable or unready to choose taking the newborn home, specialized foster care or adoption are other options (see Critical Thinking Exercise).

Assist Family in Preventing Physical Problems.: Many of the physical characteristics of Down syndrome present nursing problems. The hypotonicity of muscles and hyperextensibility of joints complicate positioning. The limp, flaccid extremities resemble the posture of a rag doll; as a result, holding the infant is difficult and cumbersome. Sometimes parents perceive this lack of molding to their bodies as evidence of inadequate parenting. The extended body position promotes heat loss because more surface area is exposed to the environment. Parents are encouraged to swaddle or wrap the infant tightly in a blanket before picking up the child to provide security and warmth. The nurse also discusses with parents their feelings concerning attachment to the child, emphasizing that the child’s lack of clinging or molding is a physical characteristic, not a sign of detachment or rejection.

Decreased muscle tone compromises respiratory expansion. In addition, the underdeveloped nasal bone causes a chronic problem of inadequate drainage of mucus. The constant stuffy nose forces the child to breathe by mouth, which dries the oropharyngeal membranes, increasing the susceptibility to upper respiratory tract infections. Measures to lessen these problems include clearing the nose with a bulb-type syringe, rinsing the mouth with water after feedings, increasing fluid intake, and using a cool-mist vaporizer to keep the mucous membranes moist and the secretions liquefied. Other helpful measures include changing the child’s position frequently, performing postural drainage with percussion if necessary, practicing good hand washing, and properly disposing of soiled articles such as tissues. If antibiotics are ordered, the nurse stresses the importance of completing the full course of therapy for successful eradication of the infection and prevention of growth of resistant organisms.

Inadequate drainage resulting in pooling of mucus in the nose also interferes with feeding. Because the child breathes by mouth, sucking for any length of time is difficult. When eating solids, the child may gag on the food because of mucus in the oropharynx. Parents are advised to clear the nose before each feeding; give small, frequent feedings; and allow opportunities for rest during mealtime.

The protruding tongue also interferes with feeding, especially of solid foods. Parents need to know that the tongue thrust is not an indication of refusal to feed, but a physiologic response. Parents are advised to use a small but long, straight-handled spoon to push the food toward the back and side of the mouth. If food is thrust out, it should be refed.

Dietary intake needs supervision. Decreased muscle tone affects gastric motility, predisposing the child to constipation. Dietary measures such as increased fiber and fluid promote evacuation. The child’s eating habits may need careful scrutiny to prevent obesity. Height and weight measurements should be obtained on a serial basis, especially during infancy. Because these children grow more slowly than the general pediatric population’s trends, special growth charts developed for these children should be used (American Academy of Pediatrics, 2001).

During infancy the child’s skin is pliable and soft. However, it gradually becomes rough and dry and is prone to cracking and infection. Skin care involves the use of minimum soap and application of lubricants. Lip balm is applied to the lips, especially when the child is outdoors, to prevent excessive chapping.

Assist in Prenatal Diagnosis and Genetic Counseling.: Prenatal diagnosis of Down syndrome is possible through chorionic villus sampling and amniocentesis, since chromosome analysis of fetal cells can detect the presence of trisomy or translocation. However, analysis will not identify sporadic cases in young women when there is no indication for prenatal testing. Testing for low maternal serum α-fetoprotein, high chorionic gonadotropin, low unconjugated estriol levels, and maternal serum fetal cell markers may identify an affected fetus in women, who can then undergo amniocentesis (National Down Syndrome Society, 2006; Peterson, 2006; Hall, 2004).

Prenatal testing and genetic counseling should be offered to women of advanced maternal age or those who have a family history of the disorder. If prenatal testing indicates the fetus is affected, the nurse must allow the parents to express their feelings concerning elective abortion and support their decision to terminate or proceed with the pregnancy.

Prognosis.: Individuals with fragile X syndrome are expected to live a normal life span. Their CI may be improved by behavioral and educational interventions.

Etiology.: Hearing loss may be caused by a number of prenatal and postnatal conditions. These include a family history of childhood hearing impairment, anatomic malformations of the head or neck, low birth weight, severe perinatal asphyxia, perinatal infection (cytomegalovirus, rubella, herpes, syphilis, toxoplasmosis, bacterial meningitis), chronic ear infection, cerebral palsy, Down syndrome, or administration of ototoxic drugs (Smith, Bale, and White, 2005; Gregg, Wiorek, and Arvedson, 2004).

In addition, high-risk neonates who survive formerly fatal prenatal or perinatal conditions may be susceptible to hearing loss from the disorder or its treatment. For example, sensorineural hearing loss may be a result of continuous humming noises or high noise levels associated with incubators, oxygen hoods, or intensive care units, especially when combined with the use of potentially ototoxic antibiotics.

Environmental noise is a special concern. Sounds loud enough to damage sensitive hair cells of the inner ear can produce irreversible hearing loss. Very loud, brief noise, such as gunfire, can cause immediate, severe, and permanent loss of hearing. Longer exposure to less intense but still hazardous sounds, such as loud persistent music via headphones, sound systems, concerts, or industrial noises, can also produce hearing loss (Daniel, 2007; Kenna, 2004; Segal, Eviatar, Lapinsky, and others, 2003). Loud noises combined with the toxic substances of smoking produces a synergistic effect on hearing that causes hearing loss (Mizoue, Miyamoto, and Shimizu, 2003).

Pathology.: Disorders of hearing are divided according to the location of the defect. Conductive or middle-ear hearing loss results from interference of transmission of sound to the middle ear. It is the most common of all types of hearing loss and most frequently a result of recurrent serous otitis media. Conductive hearing impairment involves mainly interference with loudness of sound.

Sensorineural hearing loss, also called perceptive or nerve deafness, involves damage to the inner ear structures or the auditory nerve. The most common causes are congenital defects of inner ear structures or consequences of acquired conditions, such as kernicterus, infection, administration of ototoxic drugs, or exposure to excessive noise. Sensorineural hearing loss results in distortion of sound and problems in discrimination. Although the child hears some of everything going on around him or her, the sounds are distorted, severely affecting discrimination and comprehension.

Mixed conductive-sensorineural hearing loss results from interference with transmission of sound in the middle ear and along neural pathways. It frequently results from recurrent otitis media and its complications.

Central auditory imperception includes all hearing losses that are not linked to defects in the conductive or sensorineural structures. They are usually divided into organic or functional losses. In the organic type of central auditory imperception, the defect involves the reception of auditory stimuli along the central pathways and the expression of the message into meaningful communication. Examples are aphasia, the inability to express ideas in any form, either written or verbal; agnosia, the inability to interpret sound correctly; and dysacusis, difficulty in processing details or discriminating among sounds. In the functional type of hearing loss, no organic lesion exists to explain a central auditory loss. Examples of functional hearing loss are conversion hysteria (an unconscious withdrawal from hearing to block remembrance of a traumatic event), infantile autism, and childhood schizophrenia.

Symptom Severity.: Hearing impairment is expressed in terms of a decibel (dB), a unit of loudness (Table 19-2); hearing is measured at various frequencies, such as 500, 1000, and 2000 cycles/sec, the critical listening speech range. Hearing impairment can be classified according to hearing threshold level (the measurement of an individual’s hearing threshold by means of an audiometer) and the degree of symptom severity as it affects speech (Table 19-3). These classifications offer only general guidelines regarding the effect of the impairment on any individual child, since children differ greatly in their ability to use residual hearing.

Conductive Hearing Loss.: Treatment of hearing loss depends on the cause and type of hearing impairment. Many conductive hearing defects respond to medical or surgical treatment, such as antibiotic therapy for acute otitis media or insertion of tympanostomy tubes for chronic otitis media. When the conductive loss is permanent, hearing can be improved with the use of a hearing aid to amplify sound.

The nurse should be familiar with the types, basic care, and handling of hearing aids, especially when the child is hospitalized.^* Types of aids include those worn in or behind the ear, models incorporated into an eyeglass frame, or types worn on the body with a wire connection to the ear (Fig. 19-7). One of the most common problems with a hearing aid is acoustic feedback, an annoying whistling sound usually caused by improper fit of the ear mold. Sometimes the whistling may be at a frequency that the child cannot hear but that is annoying to others. In this case, if children are old enough, they are told of the noise and asked to readjust the aid.

As children grow older, they may be self-conscious about the device. Every effort is made to make the aid inconspicuous, such as an appropriate hairstyle to cover behind-the-ear or in-the-ear models; attractive frames for glasses; and placement of the on-the-body type where it is not seen, such as under a blouse or sweater. Children are given responsibility for the care of the device as soon as they are able, since fostering independence is a primary goal of rehabilitation.

Sensorineural Hearing Loss.: Treatment for sensorineural hearing loss is much less satisfactory. Because the defect is not one of intensity of sound, hearing aids are of less value in this type of defect. The use of cochlear implants^* (a surgically implanted prosthetic device) provides a sensation of hearing for individuals who have severe or profound hearing loss (Zeng and Liu, 2006; Downs and Buchman, 2005). Children with sensorineural hearing loss have lost or damaged some or all of their hair cells or auditory nerve fibers. Often these children cannot benefit from conventional hearing aids because they only amplify sound that cannot be processed by a damaged inner ear. A cochlear implant bypasses the hair cells to directly stimulate surviving auditory nerve fibers so that they can send signals to the brain. These signals can be interpreted by the brain to produce sound and sensations (Zeng and Liu, 2006; Gregg, Wiorek, and Arvedson, 2004).

Multichanneled implants are now available. This more sophisticated device stimulates the auditory nerve at a number of locations with differently processed signals. This type of stimulation allows a person to use the pitch information present in speech signals, leading to better understanding ofspeech. The trend is toward early use of cochlear implants, usually by 18 months of age, to give the child maximum opportunity to develop listening, language, and speaking skills.

Infancy.: At birth the nurse can observe the neonate’s response to auditory stimuli, as evidenced by the startle reflex, head turning, eye blinking, and cessation of body movement. The infant may vary in the intensity of the response, depending on the state of alertness. However, a consistent absence of a reaction should lead to suspicion of hearing loss. Box 19-5 summarizes other clinical manifestations of hearing impairment in the infant.

Childhood.: The child who is profoundly deaf is much more likely to be diagnosed during infancy than the less severely affected one. If the defect is not detected during early childhood, it likely will become evident during entry into school, when the child has difficulty learning. Unfortunately, some of these children are mistakenly placed in special classes for students with learning disabilities or CI. Therefore it is essential that the nurse suspect a hearing impairment in any child who demonstrates the behaviors listed in Box 19-5.

Of primary importance is the effect of hearing impairment on speech development.^* A child with a mild conductive hearing loss may speak fairly clearly but in a loud, monotone voice. A child with a sensorineural defect usually has difficulty in articulation. For example, inability to hear higher frequencies may result in the word spoon being pronounced “poon.” Children with articulation problems need to have their hearing tested.

Lipreading.: Even though the child may become an expert at lipreading, only about 40% of the spoken word is understood, and less if the speaker has an accent, mustache, or beard. Exaggerating pronunciation or speaking in an altered rhythm further reduces comprehension. Parents can help the child understand the spoken word by using the suggestions in the Nursing Care Guidelines box. The child learns to supplement the spoken word with sensitivity to visual cues, primarily body language and facial expression (e.g., tightening the lips, muscle tension, eye contact).

Cued Speech.: This method of communication is an adjunct to straight lipreading. It uses hand signals to help the child with a hearing impairment distinguish between words that look alike when formed by the lips (e.g., mat, bat). It is most often used by children with hearing impairments who are using speech rather than those who are nonverbal.

Sign Language.: Sign language, such as American Sign Language (ASL) or British Sign Language (BSL), is a visual gestural language that uses hand signals that roughly correspond to specific words and concepts in the English language. Family members are encouraged to learn signing because using or watching hands requires much less concentration than lipreading or talking. Also, a symbol method enables some children to learn more and to learn faster.

Speech Language Therapy.: The most formidable task in the education of a child who is profoundly hearing impaired is learning to speak. Speech is learned through a multisensory approach, using visual, tactile, kinesthetic, and auditory stimulation. Parents are encouraged to participate fully in the learning process.

Additional Aids.: Everyday activities present problems for older children with hearing impairment. For example, they may not be able to hear the telephone, doorbell, or alarm clock. Several commercial devices are available to help them adjust to these dilemmas. Flashing lights can be attached to a telephone or doorbell to signal its ringing. Trained hearing ear dogs can provide great assistance because they alert the person to sounds, such as someone approaching, a moving car, a signal to wake up, or a child’s cry. Special teletypewriters or telecommunications devices for the deaf (TDD or TTY) help people with impaired hearing communicate with each other over the telephone; the typed message is conveyed via the telephone lines and displayed on a small screen.^*

Any audiovisual medium presents dilemmas for these children, who can see the picture but cannot hear the message. However, with closed captioning a special decoding device is attached to the television, and the audio portion of a program is translated into subtitles that appear on the screen.^†

Socialization.: As children learn to compensate for their lack of hearing, they become extremely perceptive to visual and vibratory changes. Children often know when another person wants to talk to them because the person will walk close by but not pass. They learn to be alert to other people approaching them by seeing their shadows or feeling the vibrations of their footsteps. They are acutely aware of facial expressions and may comprehend unspoken messages more quickly than the spoken word.

Because socialization is extremely important to the child’s development, the nurse discusses with the family methods of fostering social contact. If children attend a special school for the deaf, they are able to socialize with peers in that setting. Classmates become a potential source of close friendships because they communicate more easily among themselves. Parents are encouraged to promote these relationships whenever possible.

Children with a hearing impairment may need special help with school or social activities. For children wearing hearing aids, background noise should be kept to a minimum. Because many of these children are able to attend regular classes, the teacher may need assistance in adapting methods of teaching for the child’s benefit. The school nurse is often in an optimal position to emphasize methods of facilitated communication, such as lipreading (see Nursing Care Guidelines box, p. 626). Because group projects and audiovisual teaching aids may hinder the child’s learning, these educational methods should be carefully evaluated.

In a group setting it is helpful for the other members to sit in a semicircle in front of the child. Because one of the difficulties in following a group discussion is that the child is unaware of who will speak next, someone should point out each speaker. Speakers can also be given numbers, or their names can be written down as each person talks. If one person writes down the main topic of the discussion, the child is able to follow lipreading more closely. Such suggestions can increase the child’s ability to participate in sports, organizations such as Boy Scouts or Girl Scouts, and group projects.

Support Child and Family.: After the diagnosis of hearing impairment is made, parents need extensive support to adjust to the shock of learning about their child’s disability and an opportunity to realize the extent of the hearing loss. If the hearing loss occurs during childhood, the child also requires sensitive, supportive care during the long and often difficult adjustment to this sensory loss. Early rehabilitation is one of the best strategies for fostering adjustment. However, progress in learning communication may not always coincide with emotional adjustment. Depression or anger is common, and such feelings are a normal part of the grieving process. (See also Chapter 18 for an extensive discussion of the emotional support of the child and family.)

Care for Child During Hospitalization.: The needs of the hospitalized child with impaired hearing are the same as those of any other child, but the disability presents special challenges to the nurse (see Critical Thinking Exercise). For example, verbal explanations must be supplemented by tactile and visual aids, such as books or actual demonstration and practice. Children’s understanding of the explanation needs to be constantly reassessed. If their verbal skills are poorly developed, they can answer questions through drawing, writing, or gesturing. For example, if the nurse is attempting to clarify where a spinal tap is done, the child is asked to point to where the procedure will be done on the body. Because these children often need more time to grasp the full meaning of an explanation, the nurse needs to be patient, allowing ample time for understanding.

When communicating with the child, the nurse should use the same principles as those outlined for facilitating lipreading. Ideally, nurses without foreign accents should be assigned to the child. The child’s hearing aid is checked to ensure that it is working properly. If it is necessary to awaken the child at night, the nurse gently shakes the child or turns on the hearing aid before arousing the child. The nurse always makes certain that the child can see him or her before any procedures, even routine ones such as changing a diaper or regulating an infusion. It is important to remember that the child may not be aware of one’s presence until alerted through visual or tactile cues.

Ideally, parents are encouraged to room with the child. However, it must be conveyed to them that this is not to serve as a convenience to the nurse but as a benefit to the child. Although the parents’ aid can be enlisted in familiarizing the child with the hospital and explaining procedures, the nurse also talks directly to the youngster, encouraging expression of feelings about the experience. If the child’s speech is difficult to understand, the nurse makes an effort to become familiar with his or her pronunciation of words. Parents often can be helpful by explaining the child’s usual speech habits. Nonverbal communication devices that employ pictures or words that the child can point to are also available. Such boards can also be made by drawing pictures or writing the words of common needs on cardboard, such as parent, food, water, or toilet.

The nurse has a special role as child advocate and is in a strategic position to alert other health team members and other patients to the child’s special needs regarding communication. For example, the nurse should accompany other practitioners on visits to the child’s room to ensure that they speak to the child and that the child understands what is said. Caregivers sometimes forget that the child has the abilities to perceive and learn despite a hearing loss, and consequently they communicate only with the parents. As a result, the child’s needs and feelings remain unrecognized and unmet.

Because children with impaired hearing may have difficulty forming social relationships with other children, the child is introduced to roommates and encouraged to engage in play activities. The hospital setting can provide growth-promoting opportunities for social relationships. With the assistance of a child life specialist, the child can learn new recreational activities, experiment with group games, and engage in therapeutic play. The use of puppets, dollhouses, role-playing with dress-up clothes, building with a hammer and nails, finger painting, and water play can help the child express feelings that previously were suppressed.

Assist in Measures to Prevent Hearing Impairment.: A primary nursing role is prevention of hearing loss. Because the most common cause of impaired hearing is chronic otitis media, it is essential that appropriate measures be instituted to treat existing infections and prevent recurrences (see Chapter 23). Children with a history of ear or respiratory infections or any other condition known to increase the risk of hearing impairment should receive periodic auditory testing.

To prevent the causes of hearing loss that begin prenatally and perinatally, pregnant women need counseling regarding the necessity of early prenatal care, including genetic counseling for known familial disorders; avoidance of all ototoxic drugs, especially during the first trimester; tests to rule out syphilis, rubella, or blood incompatibility; medical management of maternal diabetes; strict control of alcohol intake; adequate dietary intake; and avoidance of smoke exposure. The necessity of routine immunization during childhood to eliminate the possibility of acquired sensorineural hearing loss from rubella, mumps, or measles (encephalitis) is stressed.

Excessive noise pollution with or without smoke exposure causes sensorineural hearing loss (Daniel, 2007). The nurse should routinely assess the possibility of environmental pollution (e.g., loud noise and smoking) and advise children and parents of the potential danger of hearing loss. When individuals engage in activities associated with high-intensity noise, such as flying model airplanes, target shooting, or snowmobiling, they should wear ear protection such as earmuffs or earplugs. Even common household equipment, such as lawn mowers, vacuum cleaners, and cordless telephones, may cause noise-induced hearing loss.

Trauma.: Trauma is a common cause of blindness in children. Injuries to the eyeball and adnexa (supporting or accessory structures, such as eyelids, conjunctiva, or lacrimal glands) can be classified as penetrating or nonpenetrating. Penetrating wounds are most often a result of sharp instruments, such as sticks, knives, or scissors; propulsive objects, such as firecrackers, guns, arrows, or slingshots; or a powerful contusion by a blunt object, which may occur during a fight or from a serious car accident. Nonpenetrating injuries may be a result of foreign objects in the eyes, lacerations, a blow from a blunt object such as a ball (baseball, softball, basketball, racquet sports) or fist, or thermal or chemical burns.

Treatment is aimed at preventing further ocular damage and is primarily the responsibility of the ophthalmologist. It involves adequate examination of the injured eye (with the child sedated or anesthetized in severe injuries); appropriate immediate intervention, such as removal of the foreign body or suturing of the laceration; and prevention of complications, such as administration of antibiotics or steroids and complete bed rest to allow the eye to heal and blood to reabsorb (see Emergency Treatment box). The prognosis varies according to the type of injury. It is usually guarded in all cases of penetrating wounds because of the high risk of serious complications.

Infections.: Infections of the adnexa and structures of the eyeball or globe may occur in children. The most common eye infection is conjunctivitis (see Chapter 14). Treatment is usually with ophthalmic antibiotics. Severe infections may require systemic antibiotic therapy. Steroids are used cautiously because they exacerbate viral infections such as herpes simplex, increasing the risk of damage to the involved structures.

Infancy.: At birth the nurse should observe the neonate’s response to visual stimuli, such as following a light or object and cessation of body movement. The infant may vary in the intensity of the response, depending on the state of alertness.

Of special importance in detecting visual impairment during infancy are the parents’ concerns regarding visual responsiveness in their child. Their concerns, such as lack of eye contact from the infant, must be taken seriously. During infancy the child should be tested for strabismus. Lack of binocularity after 4 months of age is considered abnormal and must be treated to prevent amblyopia.

Childhood.: Because the most common visual impairment during childhood is refractive errors, testing for visual acuity is essential. The school nurse usually assumes major responsibility for vision testing in schoolchildren. Besides refractive errors, the nurse should be aware of signs and symptoms that indicate other ocular problems. If a referral is made to the family requesting further eye testing, the nurse is responsible for follow-up concerning the recommendation.

The shock of learning that their child is blind or partially sighted is an immense crisis for families. The family is encouraged to investigate appropriate stimulation and educational programs for their child as soon as possible. Sources of information include state commissions for the blind, local schools for the blind, American Foundation for the Blind,^* National Federation of the Blind,^† National Association for Parents of Children with Visual Impairments,^‡ National Association for Visually Handicapped,^§ American Council of the Blind, and CNIB.^¶

Promote Parent-Child Attachment.: A crucial time in the life of blind infants is when they and their parents are getting acquainted with each other. Pleasurable patterns of interaction between the infant and parents may be lacking if there is not enough reciprocity. For example, if the parent gazes fondly at the infant’s face and seeks eye contact but the infant fails to respond because he or she cannot see the parent, a troubled cycle of responses may occur. The nurse can help parents learn to look for other cues that indicate the infant is responding to them, such as whether the eyelids blink; whether the activity level accelerates or slows; whether respiratory patterns change, such as faster or slower breathing, when the parents come near; and whether the infant makes throaty sounds when they speak to the infant. In time parents learn that the infant has unique ways of relating to them. They are encouraged to show affection using nonvisual methods, such as talking or reading, cuddling, and walking the child.

Promote Child’s Optimal Development.: Promoting the child’s optimum development requires rehabilitation in a number of important areas. These include learning self-help skills and appropriate communication techniques to become independent. Although nurses may not be directly involved in such programs, they can provide direction and guidance to families regarding the availability of programs and the need to promote these activities in their child.

Development and Independence.: Motor development depends on sight almost as much as verbal communication depends on hearing. From earliest infancy, parents are encouraged to expose the infant to as many visual-motor experiences as possible, such as sitting supported in an infant seat or swing and being given opportunities for holding up the head, sitting unsupported, reaching for objects, and crawling.

Despite visual impairment, the child can become independent in all aspects of self-care. The same principles used for promoting independence in sighted children apply, with additional emphasis on nonvisual cues. For example, the child may need help in dressing, such as special arrangement of clothing for style coordination and braille tags to distinguish colors and prints.

The blind child also must learn to become independent in navigational skills. The two main techniques are the tapping method (use of a cane to survey the environment for direction and to avoid obstacles) and guides, such as a sighted human guide or a dog guide, such as a Seeing Eye dog. Children who are partially sighted may benefit from ocular aids, such as a monocular telescope.

Play and Socialization.: Blind children do not learn to play automatically. Because they cannot imitate others or actively explore the environment as sighted children do, they depend much more on others to stimulate and teach them how to play. Parents need help in selecting appropriate play material, especially those that encourage fine and gross motor development and stimulate the senses of hearing, touch, and smell. Toys with educational value are especially useful, such as dolls with various clothing closures.

Blind children have the same needs for socialization as sighted children. Because they have little difficulty in learning verbal skills, they are able to communicate with age-mates and participate in suitable activities. The nurse discusses with parents opportunities for socialization outside the home, especially regular preschools. The trend is to include these children with sighted children to help them adjust to the outside world for eventual independence.

To compensate for inadequate stimulation, these children may develop blindisms (self-stimulatory activities, such as body rocking, finger flicking, or arm twirling). Such habits restrict the child’s social acceptance and are discouraged. Behavior modification is often successful in reducing or eliminating blindisms.

Education.: The main obstacle to learning is the child’s total dependence on nonvisual cues. Although the child can learn via verbal lecturing, he or she is unable to read the written word or to write without special education. Therefore the child must rely on braille, a system that uses raised dots to represent letters and numbers. The child can then read the braille with the fingers and can write a message using a braille writer. However, unless others read braille, this system is not useful for communicating with others. A more portable system for written communication is the use of a braille slate and stylus or a microcassette tape recorder. A recorder is especially helpful for leaving messages for others and taking notes during classroom lectures. For mathematic calculations, portable calculators with voice synthesizers are available.^*

Records and tapes are significant sources of reading material other than braille books, which are large and cumbersome. The Library of Congress^† has talking books, braille books, and a special records program, which are available at many local and state libraries and directly from the Library of Congress. The talking book machine and tape player are provided at no cost to families, and there is no postage fee for returning the materials. Recording for the Blind and Dyslexic^‡ also provides texts and tapes of books, which are helpful for secondary and college students who are blind.

Learning to use a regular typewriter is another form of writing but has the disadvantage of the blind person’s being unable to check what he or she has written. Computers eliminate this drawback; a home computer with a voice synthesizer can be adapted to speak each letter or word that has been typed.

The child with partial sight benefits from specialized visual aids that produce a magnified retinal image. The basic devices are accommodation (e.g., bringing the object closer), special plus lenses, handheld and stand magnifiers, telescopes, video projection systems, and large print. Special equipment is available to enlarge print. Information about services for the partially sighted is available from the National Association for Visually Handicapped and American Foundation for the Blind. Children with diminished vision often prefer to do close work without their glasses and compensate by bringing the object very near to their eyes. This should be allowed. The exception is the child with vision in only one eye, who should always wear glasses for protection.

Care for the Child During Hospitalization.: Because nurses are more likely to care for children who are hospitalized for procedures that involve temporary loss of vision than for children who are blind, the following discussion concentrates primarily on the needs of such children. The nursing care objectives in either situation are to (1) reassure the child and family throughout every phase of treatment, (2) orient the child to the surroundings, (3) provide a safe environment, and (4) encourage independence. Whenever possible, the same nurse should care for the child to ensure consistency in the approach.

When sighted children temporarily lose their vision, almost every aspect of the environment becomes bewildering and frightening. They are forced to rely on nonvisual senses for help in adjusting to the blindness without the benefit of any special training. Nurses have a major role in minimizing the effects of temporary loss of vision. They need to talk to the child about everything that is occurring, emphasizing aspects of procedures that are felt or heard. They should approach the child by always identifying themselves as soon as they enter the room. Because unfamiliar sounds are especially frightening, these are explained. Parents are encouraged to room with their child and participate in the care. Familiar objects, such as a teddy bear or doll, should be brought from home to help lessen the strangeness of the hospital. As soon as the child is able to be out of bed, he or she is oriented to the immediate surroundings. If the child is able to see on admission, this opportunity is taken to point out significant aspects of the room. The child is encouraged to practice ambulating with the eyes closed to become accustomed to this experience.

The room is arranged with safety in mind. For example, a stool or chair is placed next to the bed to help the child climb in and out of bed. The furniture is always placed in the same position to prevent collisions. Cleaning personnel are reminded of the need to keep the room in order. If the child has difficulty navigating by feeling the walls, a rope can be attached from the bed to the point of destination, such as the bathroom. Attention to details such as well-fitting slippers or robes that do not drag on the floor is important in preventing tripping. Unlike the child who is blind, these children are not familiar with navigating with a cane.

The child is encouraged to be independent in self-care activities, especially if the visual loss may be prolonged or potentially permanent. For example, during bathing the nurse sets up all the equipment and encourages the child to participate. At mealtime the nurse explains where each food item is on the tray, opens any special containers, prepares cereal or toast, and encourages the child in self-feeding. Favorite finger foods, such as sandwiches, hamburgers, hot dogs, or pizza, may be good selections. The child is praised for efforts at being cooperative and independent. Any improvements made in self-care, no matter how small, are stressed.

Appropriate recreational activities are provided, and if a child life specialist is available, such planning is done jointly. Because children with temporary blindness have a wide variety of play experiences to draw on, they are encouraged to select activities. For example, if they like to read, they may enjoy being read to. If they prefer manual activity, they may appreciate playing with clay or building blocks or feeling different textures and naming them. If they need an outlet for aggression, activities such as pounding or banging on a drum can be helpful. Simple board and card games can be played with a “seeing partner” or an opponent who helps with the game. They should have familiar toys from home to play with, since familiar items are more easily manipulated than new ones. If parents want to bring presents, they should be objects that stimulate hearing and touch, such as a radio, music box, or stuffed animal.

Occasionally, children who are blind come to the hospital for procedures to restore their vision. Although this is an extremely happy time, it also requires intervention to help them adjust to sight. They need an opportunity to take in all that they see. They should not be bombarded with visual stimuli. They may need to concentrate on people’s faces or their own to become accustomed to this experience. They often need to talk about what they see and to compare the visual images with their mental ones. The children may also go through a period of depression, which must be respected and supported. The nurse or parents should refrain from statements such as “How can you be so sad when you can see again?” Instead the children should be encouraged to discuss how it feels to see, especially in terms of seeing themselves.

Newly sighted children also need time to adjust to the ability to engage in activities that were impossible before. For example, they may prefer to use braille to read, rather than learning a new “visual approach,” because of familiarity with the touch system. Eventually, as they learn to recognize letters and numbers, they will integrate these new skills into reading and writing. However, parents and teachers must be careful not to push them before they are ready. This applies to social relationships and physical activities as well as learning situations.

Assist in Measures to Prevent Visual Impairment.: An essential nursing goal is to prevent visual impairment. This involves many of the same interventions discussed under hearing impairments:

After detection of eye problems, the nurse has a responsibility to prevent further ocular damage by ensuring that corrective treatment is used. For the child with strabismus, this often necessitates occlusion patching of the stronger eye. Compliance with the procedure is greatest during the early preschool years. It is more difficult to encourage school-age children to wear the occlusive patch because the poor visual acuity of the uncovered weaker eye interferes with school work and the patch sets them apart from their peers. In school they benefit from being positioned favorably (closer to the chalkboard or other visual media) and allowed extra time to read or complete an assignment. If treatment of the eye disorder requires instillation of ophthalmic medication, the family is taught the correct procedure (see Chapter 22).

For the child with refractive errors, the nurse helps the child adjust to wearing glasses. Young children who often pull glasses off benefit from temporal pieces that wrap around the ears or an elastic strap attached to the frames and around the back of the head to hold the glasses on securely. After children appreciate the value of clear vision, they are more likely to wear the corrective lenses.

Glasses should not interfere with any activity. Special protective guards are available during contact sports to prevent accidental injury, and all corrective lenses should be made from safety glass, which is shatterproof. Often, corrective lenses improve visual acuity so dramatically that children are able to compete more effectively in sports. This in itself is a tremendous inducement to continue wearing glasses.

Contact lenses are a popular alternative, especially for adolescents. Several types are available, such as hard lenses, including gas-permeable ones, and soft lenses, which may be designed for daily or extended wear. Contact lenses offer several advantages over glasses, such as greater visual acuity, total corrected field of vision, convenience (especially with the extended-wear type), and optimal cosmetic benefit. Unfortunately, they are usually more expensive and require much more care than glasses, including considerable practice to learn techniques for insertion and removal. If they are prescribed, the nurse can be helpful in teaching parents or older children how to care for the lenses.

Because trauma is the leading cause of blindness, the nurse has the major responsibility of preventing further eye injury until specific treatment is instituted. The major principles to follow when caring for an eye injury are outlined in the Emergency Treatment box on p. 630. Because patients with a serious eye injury fear blindness, the nurse should stay with the child and family to provide support and reassurance.

Prognosis.: The overall prognosis for retinoblastoma is favorable, with a survival rate of nearly 90% for both unilateral and bilateral tumors. Retinoblastoma is one of the tumors that may spontaneously regress. Of major concern in long-term survivors is the development of decreased visual acuity, facial disfiguration, and secondary tumors—especially osteogenic sarcoma, other sarcomas, and melanoma. Children with bilateral disease (hereditary form) are more likely to develop secondary cancers than are children with unilateral disease. It is thought that these individuals are predisposed to developing cancer and that radiation increases their risk.

Family Support.: ASD, as with so may other chronic conditions, involves the entire family and often becomes “a family disease.” Nurses can help alleviate the guilt and shame often associated with this disorder by stressing what is known from a biologic standpoint and provide family support. It is imperative to help parents understand that they are not the cause of the child’s condition.

Parents need expert counseling early in the course of the disorder and should be referred to the Autism Society of America.^* The society provides information about education, treatment programs and techniques, and facilities such as camps and group homes. Other helpful resources for parents of children with ASD are the local and state departments of mental health and developmental disabilities; these organizations provide important programs for ASD children and in-school programs throughout the United States.

As much as possible, the family is encouraged to care for the child in the home. With the help of family support programs in many states, families are often able to provide home care and assist with the educational services the child needs. As the child approaches adulthood and parents become older, the family may require assistance in locating a long-term placement facility.