An estimated five percent of children born in the U.S. each year who survive at birth have some form of disability.
As Jennifer and Alden Drake awaited the birth of their first child, they made all the arrangements typical of expectant parents: fixing up a nursery, buying baby furniture and picking out a name. They thought they were fully prepared for her arrival, but when Rebecca Drake was born and diagnosed with Down syndrome, they realized things were going to be very different from what they had planned.
“I was devastated. Alden and I cried buckets of tears. “We weren’t sure we were up to the task,” Jennifer recalls of their first reaction to the news. The Drake’s response to Rebecca’s condition has been shared by countless families across the country. An estimated five percent of all children born in the United States who survive birth have some form of disability. From Shock to Acceptance Social worker Lisa Harris, a family counselor in an early intervention program, describes how parents feel when they first learn their child is afflicted.
“Parents go through different stages at different times depending on their lives and the child’s health,” Harris says. “The usual progression, though, is shock and disbelief, anger, sadness, guilt and finally, the toughest one to get to, acceptance.” According to Harris, many parents direct their anger at the medical profession, particularly questioning why a doctor did not detect problems sooner. They turn on themselves as well, wondering if there was something they did to contribute to the child’s problem.
Fathers often experience more of a sense of helplessness than mothers since they are usually not involved in the child’s day-to-day activities. Harris explains, “Fathers feel out of control. The usual things aren’t fitting together. They are faced with something they can’t fix. They feel hurt because they want to make things better and they can’t.” The Drakes each have a unique perspective on their daughter’s situation. Jennifer finds herself more concerned about Rebecca’s actual development: “If she doesn’t learn, it’s because of me.” Alden, however, is more optimistic and focuses on what Rebecca can do now. Reach for the Positives Having a child with special needs can put a strain on a marriage.
Published statistics attest to the fact that four out of five couples with disabled children separate. Although Harris agrees that there may be added tension in such families, she has seen more cases of husbands and wives being pulled closer together. Counseling is an option sought by some. One family found it helpful in opening up the lines of communication to resolve some of the tougher issues. Most agree the daily pressures are trying for both partners. Kathy and Chip Sanders often struggle with the inequality of the burden of care for their daughter, Julia, who has muscular dystrophy.
“At first we were drawn closer together as we shared the common pain and questions about Julia’s condition,” explains Kathy. “But as time goes on, Julia’s needs have become more of my responsibility, and I sometimes feel a distance from my husband.” Last spring, Julia required foot surgery, and it was Chip who stayed with her in the hospital. “Chip doesn’t think of Julia as having problems until something happens to hit him in the face, such as her surgery last year,” reflects Kathy. “It brought him back into the pain.” As families learn to accept their child’s limitations they begin to reach for the positives. For some, it is the fact that their child has survived. For others, it is the development of a new perspective on life.
“He makes us appreciate simple, everyday things more because they are more difficult for him to achieve,” shares one local parent, about her son. The Sibling Situation An additional component exists for families with more than one child. Much depends on where the special needs child is in the birth order. Lisa Harris describes some of the effects on older brothers and sisters, “Parents expect a lot from older siblings: to be good, not to rock the boat, to do well at school. The older child is often needed to help with the care of the disabled sibling and becomes parentified.”
Some children feel guilty for being healthy and ask why they were not the one affected. They also find it difficult when the disabled child requires therapy at home. They want attention too and push to be part of what is going on. Sensitive therapists often bring extra toys along to entertain brothers and sisters. Younger siblings tend to be more willing to accept a special needs child. They have not had to make adjustments to accommodate a disabled child entering the home. Parents often find themselves struggling to give equal time to each child.
They may compensate by taking the siblings on private outings or adapting nap and bedtimes to allow for more personal attention. Reaching Out For many families of special needs kids, relationships with extended family and friends can be difficult. A sense of isolation develops for both parties as they wrestle with how to maintain the relationship. The fact that a child with special needs often looks different can cause a family to feel that they do not “fit in” socially. Many parents find it helpful to join a support group with others who are in similar situations.
Barbara Bean, a social worker for the special needs program at an HMO, offers these suggestions to friends of families of special needs kids: “Be there for the family. Don’t offer condolences; offer support and assistance.” Harris adds, “Be sensitive to how the family is coping. Ask how you can help. Be honest about how tough it is for you.” Parents need to know that friends are there to listen. Harris advises, “Take a step back. Give them a chance to say what they want. Learn how to handle the quietness.” Kathy Sanders says the best help her friends provide is “to listen and ask how we are really doing.
Enjoy Julia for who she is. Pray for us and let us know you are.” All-too-easy solutions and denials are not helpful. Some families resent being told to be thankful for all the progress their child is making. If a child dies as a result of his disabilities, Harris urges that friends try not to comfort the family by saying, “isn’t this a blessing? It was for the best.”
Bean and Harris both encourage families to expose their children with special needs to as many normal experiences as possible. Birthday parties, picnics and trips to the zoo are fun for all children. Families of special needs kids long for their child to be accepted as any other child is: a human being with strengths and weaknesses.
Bean hopes “people will see beyond the disability to the child’s abilities and enhance and support these.”
Susan Solomen Yem is a mother and freelance writer.