Living with a Developmental Disability: A Family's Perspective

by Barb Barton, MSW, CQ Manager

In 1961, Neil Vogel waited alone in the designated ‘Father’s Waiting Room’, excitedly anticipating word on his fourth child. His wife, Rayda’s, OB/GYN came in and announced: “Congratulations, you have a son. But I have bad news. He’s Mongoloid.” Rayda was not notified until a day later. Mongoloidism was the euphemism for what is now known as Down Syndrome, a chromosomal disorder.

Diagnosis and Definition

The Vogels describe their reactions upon diagnosis as shock, devastation, and tears. “What does all this mean and what will the future hold? Who will take care of him when we are gone?” Neil wondered if he would be able to afford to keep his job as a schoolteacher, and they didn’t know how their traditional family camping trips would be possible.

According to the Association for Retarded Citizens (ARC), 2.5 to 3 percent of the general population has various diagnoses of mental retardation. The 1990 census estimates that 6.2 to 7.5 million people have mental retardation, affecting one out of ten families. A diagnosis of mental retardation is based on three criteria: 1) intellectual functioning (IQ) is below 70-75; 2) significant limitations exist in two or more adaptive skill areas; and 3) the condition is present from childhood (defined as age 18 or younger). (American Association for Mental Retardation, 1992) Causes are generally attributable to five categories:

1. Genetic (such as PKU)/chromosomal (such as Down Syndrome) conditions
2. Problems during pregnancy, such as alcohol/drug use, maternal illness or malnutrition, or HIV
3. Problems at birth like low birth weight or prematurity
4. Problems after birth, such as childhood diseases, anoxic injuries, and lead or other environmental toxins
5. Poverty and cultural deprivation. Children in poor families are at high risk for malnutrition, disease-producing conditions, inadequate medical and pre-natal care, and environmental health hazards. Research also suggests that deprivation of common cultural, peer and structured day-to-day life experiences can produce under-stimulation and result in developmental delays.

The American Association for Mental Retardation (AAMR) process for diagnosing and classifying a person as having mental retardation contains three steps and describes the system of supports a person needs to overcome limits in adaptive skills:

1. Administration of standardized intelligence tests and a standardized adaptive skills test.
2. A description of the person’s strengths and weaknesses across four dimensions: Intellectual and adaptive behavior skills, psychological/emotional considerations, physical/ health/etiological issues, and environmental considerations. This information is gathered through formal testing, observation, interviewing key people in the person’s life, interviewing the individual, or interacting with the person in his/her daily life.
3. An interdisciplinary team determines needed supports across the above four dimensions and determines the level of service intensity- intermittent, limited, extensive, pervasive. Frequently, agencies funded through the state, such as Community Mental Health Agencies, provide case managers to assist families through this process.

Specific criteria for the State of Michigan exist for the diagnosis of a ‘developmental disability’. If applied to an individual older than five years, a severe, chronic condition must exist that meets all of the following criteria:

1. Is attributable to a mental and/ or physical impairment.
2. Is manifested before the individual is 22 years old.
3. Is likely to continue indefinitely.
4. Results in substantial functional limitations in three or more areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, economic self-sufficiency, individual needs for a combination and sequence of special, interdisciplinary, or generic care, treatment or other services that are of lifelong duration and are individually planned and coordinated.
5. If applied to a minor from birth to age five, a substantial developmental delay or a specific congenital or acquired condition with a high probability resulting in a developmental disability if services aren’t provided.

Developmental disabilities cut across the lines of racial, ethnic, educational, social and economic backgrounds. Of those diagnosed, 87% will be mildly impaired and many will be able to live supported in the community with successful vocational and social experiences. The remaining 13%, those with IQ’s under 50, will most likely have serious limitations in functioning. However, with early intervention, educational planning, and appropriate supports as adults, all can lead satisfying lives in the community.

Coming to Terms

When the Vogels received their son Ron’s diagnosis, very little information was available. Educational support legislation had not been passed. Professionals seemed uninformed. They just did not know what to expect. They were told Ron wouldn’t live past his teen years, and that he would have sparse hair. He would have substantial medical complications for which no drugs were available.

Due to advances in treatment, care, diagnosis, and early intervention, most people with developmental disabilities live a high quality of life, enjoying their favorite activities, working, and socializing with peers. However, due to issues regarding medical fragility, there can be a lifespan reduction of 10 to 20 years.

Wherever possible, it’s important to work with the family to present options for supporting their child, teen, or adult, which focus on strengths and abilities, enhance self-esteem, promote psychosocial functioning, provide needed support to the family unit, and enable the individual to live as independently as possible.

With the availability of increased information about developmental disabilities and enhanced disability awareness, families and professionals need to be conscious of the emotional impact such a diagnosis may have on a family. Unlike an acute illness, a developmental disability requires a lifelong commitment to family role modification and social adjustments. The process is often compared to the Grief Cycle, in which parents can rotate between any stage:

1. Denial and Isolation. When parents are first handed their newborn son or daughter who has a developmental disability, feelings of shock and disbelief can be overwhelming. They may go to multiple specialists, certain there has been a mistake. Careful evaluation and assessment should be encouraged, even involving other professionals; but providers should be aware that the family is looking for hope at this stage. This is also the stage where families tend to receive good educational information about the diagnosis.
2. Anger. “Why me? Why us?” are the questions frequently asked. The parents are looking for causes and for someone to blame. Frequently, the rage is directed at professionals who they believe are not giving them timely or accurate information. The family is feeling a sense of urgency to do something, anything, now. They may start examining their own patterns of behavior, such as smoking or alcohol use. Marital discord and blame can surface, and unless intervention is provided, the couple will have a difficult time being allies, advocates and partners in the care of their child.
3. Bargaining. There is a heavy spiritual shift in this stage. Parents may recommit to formerly held, but sublimated, spiritual beliefs. They may enhance their spiritual commitment, promising to fully dedicate their life to living out the purest of religious beliefs and tenets ‘…if only’ the diagnosis could be changed.
4. Depression. There are many losses associated with the shattered dreams of the birth of a less-than-perfect child. Parents are concerned about the child’s future. Family finances. Sibling and family relationships, and changing family roles. Educational, social and community supports. Where to get the most current treatment and diagnosis information. Providers need to be sure that appropriate assessment and treatment are provided and that the whole family receives sufficient levels of support.
5. Acceptance. Positive adjustment occurs when a family feels a sense of control over the diagnosis and confidence that they can manage the many unknowns of raising a child with a developmental disability. This could mean finding a secure residential placement, a caring school environment, connections with other families in similar situations, and trusting relationships with treatment professionals. Throughout their son’s or daughter’s developmental stages, his or her skills and abilities emerge and his or her place in the family is more easily defined. Expectations are set and routines emerge that promote healthy family adjustment.

For the Vogels, they gradually learned what was helpful, what caused disruptive behavior in Ron, and what enjoyable activities they could do as a family. With some modifications, they kept their camping outings, and Ron learned to play Frisbee from his siblings. The family discovered the best way to cope with what Neil refers to as Ron’s “stubbornness” is through cajoling rather than making demands. Ron and Neil enjoy walks together when Ron returns home from Pine Rest’s Southwood Cottage, where he has resided since 1993. (Prior to that, Ron attended Pine Rest’s former Retreat School while he lived at home.) The Vogels utilized family and friends to provide respite.

What is it like for the siblings?

According to Neil and Rayda Vogel, their other three children grew “ more sensitive to others with disabilities. For a while they didn’t realize their brother was particularly different and took things in stride.” Unlike many children with developmental disabilities, Ron wasn’t teased by others his age, but his siblings were asked what ‘happened’, or what was ‘wrong’ with Ron. For other families, however, sibling issues do develop. In those families where one of the children is disabled, the following concerns have been reported (Meyer and Vadasy 1994):

1. Guilt about not having a disability. Some siblings may even feel they are to blame for the disability.
2. Embarrassment of the sibling’s behavior or appearance. Contact may be avoided and friends might not be invited over to the family’s home.
3. Fear that they might develop the disability, and that it is contagious.
4. Anger or jealousy over the amount of attention their brother or sister receives, especially if special care is needed.
5. Isolation and feeling like no one else knows what it is like to have a sibling with a disability.
6. Pressure to achieve in order to “make up for” a brother or sister’s inabilities.
7. Caregiving, especially if it conflicts with plans with friends or the responsibility becomes burdensome.
8. Information about the disability itself: Why did he or she get it? How will it affect us as a family? How can I help?

Just like the Vogels’ children, researchers also have found that children who have a sibling with a disability can become more mature, responsible, self-confident, independent and patient. These siblings can also become more altruistic, more charitable, more sensitive to humanitarian efforts, and have a greater sense of closeness to family. (Lobato, 1990; Powell, 1993).

Suggestions for Parents

Becoming strong advocates for their child from the time of birth is critical for parents. Parents should thoroughly understand Federal programs such as Social Security and Medicare, State programs such as Medicaid and special education programming, and become comfortable contacting legislators and lawmakers regarding advocating for services. Information on Special Needs Legislation, which mandates the provision of educational and support services, should also be garnered to guarantee effective planning through the school’s Individual Educational Plan (IEP). Parents should gather information on Public Law 94-142 (1975), which guarantees that all children with disabilities are entitled to a free, appropriate education in the least restrictive environment. The Individuals with Disabilities Act of 1990 (IDEA), or public law 101-476, which expanded the definition of disability, requires IEP’s address transition services especially for those age 16 and older, and makes assistive technology provisions. The Vocational Act of 1973 (especially Section 504) and the Americans with Disabilities Act of 1990 both provide fairly comprehensive provisions for health and social services, and anti-discrimination clauses for people with disabilities.

Families often rely on their spiritual strength to work through the lifelong process of parenting a son or daughter with a developmental disability. Rayda Vogel’s faith is especially strong. “If you have faith, all things work together for good to those who love God. Everyone has a purpose on this earth. Everyone.”

Neil and Rayda Vogel also advise parents who face similar challenges, “Find out what help is available and learn all you can about the diagnosis. There wasn’t anything out there when Ron was born; we were so unaware.” The Association for Retarded Citizens also offers these suggestions to parents of children at any age:

1. Encourage independence and allow your child to explore his or her world.
2. Children need to learn that what they say or do is important and can influence others. Encourage your child to ask questions and express opinions.
3. Self-worth and self-confidence are important factors in developing self-determination. Tell your child often that he or she is important.
4. Don’t run away from your child’s questions about differences related to his or her disability.
5. Teach your child about working toward goals. Talk about the steps to complete the tasks.
6. Schedule opportunities for your child to interact with children of different ages and backgrounds.
7. Don’t become complacent about your child’s abilities. Undertake activities that challenge his or her current skills.
8. Allow your child to take responsibility for his or her actions, both positive and negative. Let him or her know why you took certain actions.
9. Take every opportunity for your child to make choices. This may be in what your child wears, eats, or even where you go on vacation.
10. Provide honest, positive feedback. Focus on behavior or tasks that need to be changed, but don’t make your child feel like a failure.

Families who have a son or daughter with a developmental disability can face tremendous challenges, but with the right tools - education, the support of family and friends, a strong faith, a supportive treatment team… and a belief in the discovery of abilities, life can be highly enriching.

Many thanks to the national organizations who provided information for this article.

Special appreciation to Rayda and Neil Vogel who graciously shared their personal story. Neil is a member of the Developmental Disabilities Subcommittee of PRCMHS Board of Directors, and the Chairman of the Developmental Disabilities Family Advisory Group.

Suggested Web Sites

American Association on Mental Retardation
National Association of Developmental Disabilities Council
The Arc
National Information Center for Children and Youth with Disabilities
Autism Society
Asperger’s Syndrome Support Network Home Page
The Center for the Study of Autism (autism research)
On-Line Asperger’s Syndrome Information and Support (O.A.S.I.S.)
Future Horizons (publishing company for autism literature)
President’s Committee on Mental Retardation