The birth of a child with a disability, or the discovery that a child has a disability, can have profound effects on the family. In “You are Not Alone,” Patricia McGill Smith offers the insights that she and others have gained through their own experience of having a child with a disability. In this article, we will provide additional information to support the life cycle, health, and well-being of the family when a member has a disability.
It is with a great deal of humility that we are even attempting to describe what the future may hold for you and your family. On the one hand, we want you to be as prepared as possible so you can negotiate the challenges that may await your family. On the other hand, we recognize that individual variation and differences are the rule when a child has a disability. Researchers often base their findings on group data—what happens to the majority of people in a circumstance. However, what might be “true” in a research sense may not be at all true for your family. Therefore, while we hope this article will guide you to sources that are helpful, take from our discussion only what you need.
Growth is endless and our lives change and change us beyond anticipation. I do not forget the pain—it aches in a particular way when I look at Jessy’s friends (her paid companions), some of them just her age, and allow myself for a moment to think of all she cannot be. But we cannot sift experience and take only the part that does not hurt us. (1)
No parent wants his or her child to be sick, disabled, or harmed in any way. It is not an experience anyone expects to have; rather, it is a journey that is unplanned. The terrain families must travel is often rough in places. And yet, the majority of families are able to find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges that may accompany their child’s illness or disability.
Many parents have described the progression—and pendulum—of feelings they experienced upon learning that their child has an illness or a disability. Patty McGill Smith touched upon many of these emotions in her article—shock, denial, grief, guilt, anger, confusion. The type of emotions parents experience, as intense and overwhelming as they may be, are also normal and acceptable. Stability does return, both to the individual and to the family. Parents begin to search for needed information. Many report feelings of personal growth that are often, in retrospect, astounding to them. One mother, reflecting on life after the birth of a child with spina bifida and other disabilities, says:
I have learned, and grown, more since Dylan’s birth than any other time in my life. You learn patience, and you get to witness miracles that you otherwise would have been too busy to have noticed…You learn acceptance, you realize you have been wrong to judge, and you learn that there is a thing called unconditional love. (2)
Taken together, the many suggestions and insights offered by parents who have lived for years with the experience of disability in the family can provide parents who are new to the experience with much guidance and support. The remainder of this article will outline many of the ways that parents have helped themselves and those they love adjust to living with and caring for a child with special needs.
Access Information and Services
One of the first things you can do that may prove enormously helpful, now and in the future, is to collect information—information about your child’s disability, about the services that are available, and about the specific things you can do to help your child develop to the fullest extent possible. Collecting and using the information available on disability issues is a critical part of being a parent of a child with special needs. Fortunately, there is a great deal of information available on many disabilities and many disability issues.
NORTH COUNTRY SUPPORT AND INFORMATION RESOURCES:
Disabled Persons Action Organization - http://www.dpao.org/services.htm