Signs and Symptoms

The diagnosis is determined after a thorough study by a team of experts, including a pediatrician, psychologist, psychiatrist, nurse, and social worker. Conditions such as epilepsy, cerebral palsy, severe malnutrition, emotional disturbances, blindness, deafness, and speech disorders must be ruled out. Severe intellectual disability might be noticeable at birth (see Did You Know?), and the nursery nurse must be alert to cues. Early recognition in certain cases can lessen the disability. For example, routine testing of newborns for conditions such as PKU and congenital hypothyroidism allows for early treatment and facilitates normal intelligence.

Developmental delays with failure to meet milestones at a particular age may be an indication of intellectual disability. A child who does not smile, sit, climb stairs, stand, or walk within the usual age limits might have an intellectual disability, although these signs can be caused by other problems. A child may also be slow in speech, in learning self-care, or in toilet training. Unusual clumsiness and failure to respond to stimuli are early indications. Sometimes this disability is not discovered until the child enters school.

Even though children with intellectual disabilities are often categorized by IQ levels, each child must be frequently reevaluated according to individual progress. Many children who have received early intervention beginning in infancy outperform all expectations. A plan for each child should be devised to maximize the child’s potential.

Treatment and Nursing Care

Nurses need to recognize that the pace of development is slower than that for the child without a disability. These children also lack the ability to think abstractly, so they have difficulty transferring learning from one situation to another. They learn by habit formation, which involves routine, repetition, and relaxation. Nurses working with these children must have a good understanding of the growth and developmental process. It is important that the child show a readiness for the task, whether it is toilet training, feeding self, or dressing. The atmosphere should be one of friendliness, and directions should be kept simple.

The nurse caring for developmentally disabled children in the hospital needs to know each child’s stage of maturation and abilities. A detailed history, including a habit and care sheet, is completed. Self-help activities are documented.

While communicating with the child may be difficult, it is important to follow home routines as closely as possible. The progress the child has made should not be allowed to slip during hospitalization. Good communication between parents and nurse helps make the transition from home to hospital as smooth as possible for the child.

Developmentally and intellectually disabled children are referred for early intervention as soon as possible after diagnosis. The American Association on Intellectual and Developmental Disabilities (AAIDD) “Supports approach” evaluates the specific needs of the individual and focuses on strategies and services that optimize individual functioning. Supports are defined as the resources and individual strategies necessary to promote individual development of the person with developmental disabilities. Support areas include home living, education, human development, community living, employment, health and safety, behavior, social, and protection and advocacy (AAIDD, 2010).

In 1975, the U.S. Congress passed the Education for All Handicapped Children Act (PL 94-142), which guarantees the right of developmentally disabled persons and other disabled persons to receive appropriate education at public expense. Recent amendments include a change in name to Individuals with Disabilities Education Act (IDEA). The amendments include 14 specific primary terms that guide how States define disability and who is eligible for free public education. Included are early intervention services for infants and toddlers (birth to 2 years of age). Developmentally disabled children who are being educated in the public schools have individual educational plans (IEP) that delineate services and specific educational adaptations to meet their needs. Many communities also have sheltered workshops in which developmentally disabled adults can work. These centers provide an opportunity for individuals to be more independent and increase their self-esteem.

Like other children, developmentally disabled children must have limits set on behavior. The adult must be firm and consistent. Correction must directly follow any offense. Love, liberal praise, respect, and infinite patience are essential in helping developmentally disabled children to develop to fullest capacity.

The parents of a developmentally disabled child need support, compassion, and understanding, not pity. For nurses to work effectively with the child and the family, they must face their own feelings and develop a positive attitude. Sharing ideas and feelings with experienced professionals who work with developmentally disabled individuals helps nurses acquire enthusiasm for what these children and families can accomplish.

The problems confronting the parents usually become more complicated as the child develops physically and chronologically but still requires constant supervision. Puberty can be a particularly difficult period. Some parents make the decision that they are no longer able to care for their child adequately at home. The decision to institutionalize the child is a difficult one. Many things must be taken into consideration, such as the health of the parents, the effect on other children in the family, the community services available, and the financial status of the family. Even when the decision is made, there are long waiting lists in many places. Facilities are overcrowded, and the tendency is to take those who are most severely developmentally disabled first.

It is important that nurses be familiar with the resources in their communities so that they can direct the family to them. The local chapter of The Arc (www.thearc.org) can provide information and support. The child guidance clinic or the psychological services of a nearby college or hospital may provide beneficial assistance. The visits of the public health nurse are invaluable in many cases. Children also may be eligible to obtain help from their local vocational and rehabilitation agency. Respite care workers afford needed rest and increased mobility for parents. In some communities, parent groups meet to discuss mutual problems. Arrangements for proper dental health must be made.

Developmentally disabled children can participate readily in recreational programs with supervision. The Special Olympics program, for example, facilitates participation in various individual and team sports. The enthusiasm of the children and volunteers in this program is overwhelming.

Signs and Symptoms

The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders has repeatedly tried to precisely define and categorize symptoms of ADHD. With its most current DSM-IV-TR criteria, the Association identifies three major patterns of the disorder: (1) ADHD, predominantly inattentive type; (2) ADHD, predominantly hyperactive-impulsive type; and (3) ADHD, combined (American Psychiatric Association, 2004). Symptoms must be present for at least 6 months, must have appeared before 7 years of age, must be identified in more than one setting (home, school), and must cause significant impairment in psychosocial or educational adjustment and functioning (American Psychiatric Association, 2004). In addition, other causes for the behavior must be ruled out before a diagnosis can be made.

The diagnosis is difficult to establish because sometimes symptoms are subtle, and the diagnosis has become a “catch-all” for children with behavioral problems that might be the result of other causes. The diagnosis is made primarily from the child’s history and interviews with family and teachers. Several screening tests are available to help with data collection.

The following are some manifestations that suggest ADHD:

A child with these characteristics may have difficulties in school and in social situations. Children with ADHD are a challenge for parents, family members, and school professionals.

Treatment and Nursing Care

Children with ADHD should be managed by a multidisciplinary team consisting of a nurse, physician, social worker, psychologist, and special education teacher. Parents need support and should be referred to support groups. Family counseling may be warranted. Parents should be aware that only a physician can prescribe medication.

The ideal approach to ADHD is a combination of medications and behavioral treatment. Medications are appropriate first-line treatment for children except for preschoolers (ages 4 to 6). Behavioral therapy or parent-training programs should be considered for the preschooler. There are four categories of medications that are approved for use in children. Stimulants, selective norepinephrine reuptake inhibitors (SNRIs), alpha-2 agonists, and tricyclic antidepressants (TCAs) are all FDA-approved (Table 20-1).

In addition to medications, the American Academy of Pediatrics recommends the use of behavior therapy. Programs may use training sessions with a trained therapist in behavior modification. The goal of this approach is to assist the parents in understanding the child’s behavior and learning specific techniques for altering behavior (Katragadda and Schubiner, 2007).

Initially, a careful medical history and neurologic examination are indicated. Intelligence and psychological testing may aid in determining the specific assets and liabilities of the child so that an individual learning plan can be outlined. Many schools today have special learning disability classes in which the children are helped to establish self-discipline by consistent controls, elimination of distractions, and recognition and appreciation of accomplishments. Many children with ADHD function well in the regular classroom with certain educational and behavioral modifications. These methods are reinforced by the thoughtful nurse when such a child is hospitalized.

A priority in the care of these children is a careful nursing admission history, a most useful tool in dealing with children who have problems of this nature. Nurses observe the child’s behavior alone and in interaction with the family. They document what they see, but they do not analyze. For example, a nurse would write, “Eric threw four crayons on the floor,” not “Eric appeared distraught and misbehaved this morning.” Careful attention is given to the child’s attitude toward school. Other responsibilities might include education in parenting, and assisting with screening and psychological testing. Functions pertinent to the nurse’s work setting might also include referral to appropriate agencies and assessment of the home and school environment.

Listening to the child and the parents and providing support are particularly important. If the child is hyperactive, opportunities for gross-motor play and screaming to externalize feelings, which can be encouraged at home, are limited in the hospital. The use of puppets, finger paints, and singing may be used to offset this imbalance.

When medications are necessary, the child and the family must understand the reasons for their use and their possible side effects. Periodic evaluation by the physician is essential. It is helpful if a behavior chart is kept and is submitted to the doctor before prescriptions are renewed. The child with a learning disability should not become a “sacrificial lamb” to the educational process, and the emphasis on education should not be disproportionate to the child’s innate capabilities. Personal growth and self-esteem should be emphasized. Parents should be aware that other opportunities exist that can be adjusted to the child’s abilities.

Signs and Symptoms

The signs of this condition, which are apparent at birth, are close-set and upward-slanting eyes, small head, round face, flat nose, mouth breathing, and a protruding tongue that interferes with sucking. The hands of the infant are short and thick, and the little finger is curved. In addition, there is a deep, straight line across the palm, called the simian crease (Figure 20-1). There is also a wide space between the first and second toes. Undeveloped muscles (hypotonia) and loose joints enable the child to assume unusual positions. Physical growth and development may be slower than normal (Table 20-2 and Home Care Considerations box). Most children are mildly to moderately intellectually challenged. Because of recent advances in medicine, education, and available resources, these children are able to progress further than previously possible. Many additional medical issues can accompany Down syndrome. Congenital heart deformities, gastrointestinal disorders (imperforate anus, esophageal atresia, celiac disease), pulmonary hypertension, ENT anomalies, endocrine disease (thyroid), immune dysfunction, hematologic disorders (polycythemia, leukemia), and psychiatric issues (dementia, Alzheimer’s) can all be issues for the child with Down syndrome. It is important to remember that no one child exhibits all the possible physical characteristics of Down syndrome.

Table 20-2

Developmental Milestones

MILESTONE	CHILDREN WITH DOWN SYNDROME		NORMAL CHILDREN
	AVERAGE (MO)	RANGE (MO)	AVERAGE (MO)	RANGE (MO)
Smiling	2	-3	1	-3
Rolling over	6	2-12	5	2-10
Sitting	9	6-18	7	5-9
Crawling	11	7-21	8	6-11
Creeping	13	8-25	10	7-13
Standing	10	10-32	11	8-16
Walking	20	2-45	13	8-18
Talking, words	14	9-30	10	6-14
Talking, sentences	24	18-46	21	14-32

From Carey W., Crocker, A., Elias, E., et al. (2009). Developmental-behavioral pediatrics (4th ed.). Philadelphia: Saunders, with permission.