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How Do I Cope with Childhood Disability?


by Stephen Gallup A


ll parents are well acquainted with challenges. Even when nothing out of the ordinary is going on, we cope with issues every day. However, in families where a child has a developmental disability, the


challenges can escalate to overwhelming levels. The only way to manage them successfully, on a daily basis, is to have an underlying philosophy for managing the disability itself. A child who is helpless, and who may always be helpless,


can inspire love of ferocious intensity. I’ve seen hundreds of parents demonstrate that truth. Their love and dedication is beautiful. However,


over time it can be extraordinarily wearing


on the parents when a child has hard seizures or requires constant monitoring. It can also hurt simply to see birthdays roll around when each one means his peers are leaving him further behind. Syrupy bromides might sound good, but they’re not likely to keep anyone going for the long haul. The first step toward being able to respond effectively is simply understanding and coming to terms with what you’re up against, and that process takes time. At the first indication that a child might have a disability, families are confused. There’s the hope that it’s a false alarm, a mistake, a temporary glitch. Doubt gets in the way of action. In my own family’s case, a year or more passed before my wife Judy and I told friends or relatives what we feared, because we didn’t want people reacting to our baby differently than they would have if everything had been perfect. Also, since the doctors were offering no prognosis,


we wanted to hope that things might turn out just fine. When that initial period passes, assuming the condi- tion becomes undeniable, families then generally as- sume one of two basic positions. Some accept the hand they and their child have been dealt as an unchangeable fact of life. Others make up their minds that they’re going to beat this thing. Both responses have merit. Neither, in itself, is a final answer. Acceptance looks like the reasonable option when a family cannot see themselves taking any other course of action. Some doubt their capacity to change anything. Certainly, pediatricians discourage explora- tion of therapies that have not been endorsed by the mainstream medical community. Sometimes they point out (accurately) that alternative providers tend to over- promise, or that it’s possible to spend a lot of money and have nothing to show for it.


Many parents of children with developmental issues


accept that view and never seriously consider another. I’m often asked for suggestions to help younger fami-


continued on page 19


The first step toward being able to respond effectively is simply


understanding and coming to terms with what you’re up against, and that process takes time.


familyworks.org Spring 2012 3


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