Parenting a Child with a Disability

by Katherine Schneider

[Reprinted with permission from the book To the Left of Inspiration: Adventures in Living with Disabilities by Katherine Schnieder; Copyright © 2005 Katherine Schneider (published by Dog Ear Publishing; $13.95US; 1-59858-131-7). Available through online booksellers and the National Library Service for the Blind and Physically Handicapped.]

When you decided to sign up for having a child, chances are great that you didn't special-order a child with a disability.

 In fact, one of the reasons often given for keeping abortion legal in the US is, "What if tests reveal the fetus has disabilities?" On the other hand, some parents do knowingly adopt a child with a disability.

Children always bring surprises into their parents' lives but children with disabilities bring more than their fair share of growth opportunities to their parents.

The first set of challenges is likely to involve lots of contact with the medical professions. What can be done about the disability or illness? Can I have a second opinion? What is the future going to be like for my child, and how long will they live? So many questions and such a scary time! My parents took me to several university hospitals to hear the latest thinking on what's now called retinopathy of prematurity. Now many parents will also jump on the Internet to research their child's condition.

Soon after the initial medical flurry comes the next issue: educating the child.

 The alphabet soup of IEPs (individualized education plans), Public Law 94-142, Americans with Disabilities Act (ADA)-mandated accommodations, etc., is added to the newly mastered medical jargon of medical conditions and medications and treatments. Local, national, and online support groups of people with and parents of children with the disability become the new mentors in navigating school and life with disability mazes.

But as you deal with the medical, educational, and day-to-day crises of raising a child with a disability, don't forget your emotional responses and those of your spouse and other children. The grief you feel because your child is not perfect, "normal," or whatever you call it, is completely natural. All parents worry about their children's futures, but those raising a child with a disability worry more. Some parents grieve by going through stages like those faced by people grieving a death: denial, anger, bargaining, depression, and acceptance. If the grieving process is not allowed to proceed at its own pace the process may get stuck. If the medical condition is progressive, you may go through the grieving process many times. Different people grieve differently and it is common for the disability of a child to highlight differences between two parents. One parent may be trapped in denial and the other may take over parenting entirely. A child with a disability can put much stress on a marriage and the marriage may dissolve or at least flounder for a while. In my parents' case, because of my mother's experience teaching the deaf, she dedicated herself to raising me; my father retreated to his work.

What about the other kids? Not surprisingly, they may feel resentment toward the child with the disability for getting all the attention, having less expected of them, etc., and may feel ashamed of being seen with their disabled sib. Of course, having a sibling with a disability can also bring many positives to the child without a disability, including appreciation of human differences, empathy, compassion, and pride in being a helper. There may also be conflicted feelings like gratitude for not having the disability, but fear they could catch it, and guilt for being glad they don't have it. To make the positive outcomes happen, the parents need to give the siblings plenty of information about the disability so the child can answer their own questions and their friends' questions.

 "Is it catching?" "Can someone fix it?" "Why do they act that way?" are common questions.

The non-disabled child also needs to know from the parents that they are not the disabled child's keeper and that they do not have to be a superkid to make up for what the child with a disability cannot do. Time alone with each child and talking honestly about the child's concerns about unfairness, etc. can go a long way toward creating the kind of family where the disability is just one part of family life. It may take center stage sometimes; usually, it can be on the back burner, but not ignored. Nowadays there are support groups and books both for children with disabilities and for their siblings as well.

So what's a parent to do? Three key pieces of advice:

  • At first the disability has to become your new hobby. Learn all you can, join support groups, track down adults with it.
  • Realize that your family will no longer be anonymous like "normal" families. The equipment you have to carry, the visibility of the disability, etc. make quick trips to the mall or last-minute getaways with your spouse with a babysitter holding down the fort things of the past. Your organizational and planning skills, as well as your public speaking and advocating skills, will grow by leaps and bounds.
  • Take time for yourself and your spouse. Like any crisis, a child with a disability can cause you to pull together as a team or pull apart. Use respite care, babysitting offers from extended family, etc., to get couple time even if it's only for breakfast at the corner diner to celebrate the last week's survival and plan for the next week. When your child with a disability can go to summer camp, make sure they go even if everyone is scared. Both you and they need the time apart.

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