All parents respond to challenges on a daily basis. However, in families where a child has a developmental disability, challenges can escalate to overwhelming levels. To manage them successfully, on a daily basis, we need a philosophy for managing the disability itself.
In 1985, I became the father of a baby who had mysterious problems. The doctors had no diagnosis for him, and only a wait-and-see attitude regarding the future.
After the first year, my wife Judy and I could no longer bear to wait passively. Our son was in distress, and we felt certain that anything done on his behalf would be more effective if it were done soon. Our own emotional distress had reached acute levels by that time, but we believed that the primary issue was the need to discover a way of helping our son. If we could do that, we reasoned, everyone would benefit.
A year later, a treatment program was in place and our son was making progress. Consequently, Judy and I felt optimistic. This is important because confidence enabled us to face with enthusiasm the challenges that continued to arise each day.
Many years have passed since then, during which I have attempted to understand what we did right and what might have been handled with greater wisdom. I’m often asked for suggestions to help younger families confronted with developmental disability, and have distilled my observations into a few basic concepts:
1. Remember that the child is not the condition. 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, I do not think they love whatever it is that limits the child.
2. Trust your doctor, but be prepared to think for yourself. For any number of reasons, the pediatrician you see may not know what your child needs. If you believe your child has developmental issues that are not being addressed, find another doctor.
3. Try. It’s good to fight for a cause that’s important. Even aside from the degree of success ultimately achieved, that fight is mentally satisfying.
4. Be good to yourself. There’s a tendency to tell ourselves we won’t be happy until we get this problem resolved. But we need to be happy now, too! I think this involves finding a way of enjoying the process, as opposed to deferring all satisfaction for some future time. Your child will not benefit if your own life is ruined while trying to help them.
5. Remember that your disabled child is still a child. When my son was very small, his problems preoccupied me to the extent that I put more energy into seeking answers than into relating to him as his daddy. He had to teach me, by the feedback he gave when I did something right, that he needed more than that. He also needed me to play with him and express love for him. All kids need that! Those struggling with a disability probably need it more than anyone else. Providing it is healthy for us adults, as well.
6. Don’t let your heart betray your mind. You want your child to improve. So it’s possible for just about anything to make sense if it’s presented as a means of achieving that goal. Now, unconventional ideas may indeed help. They helped in my family’s case. But you always need your common sense. If, for the moment, no intervention looks reasonable, wait until you find one that does. Until then, see step 5.
Stephen is the author of a memoir, What About the Boy? A Father’s Pledge to His Disabled Son. For more information, visit www.fatherspledge.com.
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