Tuesday, September 11, 2012

When Your Child Has a Disability– Three Things to Remember

Guest post by Stephen Gallup

(The Kikay Mom note: I initially published this guest post last year on my now-defunct blog. At that time, my own Wonder Boy was still less than two years old and it got me thinking how blessed I was that he turned out so healthy, so intelligent, and so loving. Steve is the author of the book What About the Boy? A Father’s Pledge to His Disabled Son; I will be republishing my review of the book next week because I still feel then, as I do now, that it was a good read, containing interesting insights in between gritty anecdotes of a family dealing with a special child.)

Sooner or later, all parents deal with unexpected crises. Worry is just part of the adventure of raising kids. However, a surprisingly large number of parents also discover, usually sometime in the first three years of their child’s life, that a developmental disability is also part of the picture. Their child could be given a label like Down syndrome, cerebral palsy, ADHD, or autism. Or perhaps no diagnosis is offered, despite obvious problems.

My son Joseph was one of those who with no useful diagnosis. His birth in 1985 started our family on a very long odyssey in search of help. Here are a few lessons I learned along the way.
Steve with son Joseph at 3

A child who is disabled is, first and foremost, still a child.
 There are two ways to go wrong here. When a scary label is affixed to a child, or when it becomes known in the family that the child “is not quite right,” some relatives begin acting as if that child doesn’t really exist. When they phone, they chat about everything else but avoid asking about the one topic that very likely consumes all your thoughts. When you talk about your child anyway, they show signs of discomfort. I have no solution to that. Be patient with them. They are likely in denial and with a little gentle education, they may come around.

The other error is for you to become so focused on the unexpected challenges your child’s condition presents that you forget that underneath it all he is, still, the same child he would be if there were no unusual issues. He still needs and deserves to be cherished and given the same kind of attention.

My son spent the first eighteen months of his life crying, vomiting, and giving every indication that he was in distress. His mom and I spent that time chasing from one doctor to another, trying to find somebody who understood what was going on with him. It wasn’t until halfway through the second year of his life that we found a doctor who knew how to help him. She said he had spent his life thus far in almost constant pain, resulting from birth trauma. I recall that, at about this time, I happened to establish eye contact with him one day as he sat in his high chair. Spontaneously, I blurted out, “Joseph, you are my son. I love you.” And the expression on his face took my breath away. He looked so relieved!

Now, I’m sure I had never said or done anything to give the impression that I did not love him. However, his mom and I had both been so anxious and emotionally rattled that it’s likely we had failed to demonstrate enough of the warmth and affirmation that all children need.

Trust your doctor, but be prepared to think for yourself.
With the passage of time, medical science has more to offer to families wrestling with disability. I think it is safe to say that the likelihood of finding someone who’s able to provide real help is better today than it was when Joseph was young.

Regardless of the condition you’re dealing with, board-certified physicians are the first place to turn for guidance and, hopefully, treatment.

But what should you do if, instead of offering treatment, the doctor simply tells you wait? “Come back in six months,” he says. “We’ll run this test, and I’ll call you if there’s anything to be alarmed about. In the mean time, try to be patient.” There is no debate that early intervention is a good thing in these matters, so just how long is it reasonable for a family to wait?

My wife was the one who finally lost patience with the pediatricians and insisted on broadening our search. I argued in favor of staying with mainstream doctors. I learned that I had been too conservative.

Don’t let your heart betray your mind.
Providing what a disabled child needs is a process, not a single event. Families fortunate enough to find a good healthcare provider often discover after a period of time that they have enjoyed all the benefit they are likely to see with that specialist. A point may come when they need to move on and try something else.
Now, everything we did for our son was motivated by the belief that wellness and potential are every kid’s birthright. We didn’t know that our son’s disability could be completely removed, but we wanted to give that effort our very best try. Other families may not feel that it is appropriate or possible to reach that high. Still, whatever the objective, when working on behalf of a disabled child, nothing is certain.

Joseph needed more than relief from the discomfort resulting from his birth. He’d missed a lot of developmental milestones, such as learning to crawl and walk. A second alternative provider helped him achieve those goals. But we weren’t done yet. He still couldn’t talk, and by this point he was five years old.
Over the years, we found a great many alternative providers who claimed to be able to help in one way or another. Each new idea required the investment of at least a lot of time and energy and generally also a substantial amount of money.

I still firmly believe that every kid deserves wellness and options in life. Unfortunately, lofty concepts do not necessarily mean that we can rely on everyone offering to support them. I found this out the hard way.
One physician whom I consulted freely admitted that there is a definite financial advantage in being a provider outside the mainstream: he never has to justify his charges to insurance companies or wait for their payments, because desperate patients are all too happy to pay him the full amount at the time of service. 

I’ve had others who avoided me when it became apparent that their treatment was not going to work, or who betrayed surprise when told that it did help. Worst of all is the extreme jealousy I observed many times, in which competing alternative providers denigrate one another, enlist hopeful patients to promote their own advertising, and, in one instance I recall, engage in Internet sock puppetry (pretending to be a satisfied patient of their own practice). No, I take that back. What’s even worse is giving up limited resources precious time and money in a treatment that sounds good when you don’t even know precisely what problem needs to be treated.

Sometimes, we don’t know something will have value unless we try it. And to be honest I cannot bring myself to regret trying anything that we tried. On the other hand, let’s not forget the first point I made above. We have a real child here, not just a case of this, that, or another condition. The child needs to be honored, loved, and given a balanced home life. Having that is a big part of wellness, too.

Stephen Gallup is the author of a memoir, What About the Boy? A Father’s Pledge to His Disabled Son. Please visit www.fatherspledge.com for more information.

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