Cerebral Palsy: “Justin”

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justinI remember so clearly the first time someone said that Justin had cerebral palsy. It was over the phone, not even to my face. She said, Don’t be upset, Mrs. Johnson, your son has cerebral palsy. When he was six-months-old, I read an article in a women’s magazine which described a child whose abilities, or lack there of, matched Justin’s perfectly. I knew what it was, but every time I said the words out loud, those around me became very uncomfortable, so I, like them, tried to deny what I knew to be true. Now, after ten months of begging for answers, I was given the diagnosis, the dreaded words, the life sentence. It was the most excruciating pain I have ever felt in my life, and I believe that nothing else will ever hurt me as much as those two words. So I threw up for two days.

So I did next what I believe everyone does. I took Justin back to my pediatrician, and told her what the neurologist had said. Her casual reaction to this diagnosis was unbelievable, as she calmly explained to me that cerebral palsy is a general term used for many things, and that I shouldn’t worry too much about it. Now, at that time, I was no expert, but I do remember replying to her that, while those words may not mean much to her, I was well aware that it meant that Justin had damage to the motor areas of the brain. By this time, I knew that any doctor who was either unable or unwilling to spot severe brain damage in my son was to be of no use to me in his recovery, so I left and never returned.

So, I did what the neurologist suggested: I began taking Justin to physical therapy twice a week. Each time, I watched the therapist manipulate Justin in the center of an open room, trying to get him to stand up, drape his body over a large plastic ball and tickle him so that he might do sit-ups off the ball, and other maneuvers which made little sense to me. All of this occurred with a child who was incapable of lifting his head. Anyway, I watched like a hawk, searching for that change in Justin which would validate the success of the therapy. It never came. During one visit to this therapist, I mentioned to her that Justin’s eyes rolled around in his head from time to time, and she commented that it would be interesting to find out what was causing that. Another time, she told my mother that if Justin ever walked at all, which she did not anticipate, it would only be with a walker. I was livid. All this time, I thought her goals were the same as mine; I was looking for the total cure, and realized that she never even considered that as an option. This therapist obviously had no answers for Justin; it was up to me.

I began researching. First, I scoured bookstores, buying any book which even contained a single mention of cerebral palsy. Then luck intervened. I met a mother who knew of NACD. She told me that Bob Doman came to Scottsdale every three months to evaluate children. I got an appointment that day. I told Justin’s therapist of my plans, and she told me that I was not accepting the reality of the situation, that this program would ruin my son. To this day, I believe that nothing is more damaging to an individual than prolonged lack of oxygen, and that her prognosis was not the ultimate truth. In fact, she was not accepting the reality very gracefully. So, Justin and I left.

Justin was 18-months-old when I took him to Bob Doman for the first time. He was cortically blind, with pupils barely responding to light, was unable to hold up his own head, and was so stiff that he used his right hand and arm to propel his body in order to roll from front to back, his only movement. And, he was unable to talk. However, he was beautiful, blond-haired with green eyes, had a contagious smile, and was so delightful to be with. I was happy he belonged to me. From the first evaluation on, Bob treated both Justin and me with courtesy and respect. He made no promises, only explained what helped based on his experiences, and how to do it. Justin’s first program took eight hours each day to complete, included vision therapy, physical therapy, patterning, taste and smell experiences, and much more I have by now forgotten. Fortunately, my family helped, as my husband had left right after Justin’s birth.

Two weeks after starting the program, I thought I was hallucinating, when, I saw Justin creep across the mattress of his crib. And then he did it again! That was the second most memorable day of my life.

At this time, I was involved in a malpractice suit, which resulted in other examinations for the purpose of the litigation. During one of these meetings, I was informed that my son was not only physically challenged, but mentally as well. This made little sense to me, as I knew he understood me, but the pain was once again immense. The next specialist explained to me that Justin was deaf. I knew this was wrong, because he was able to hear me tip toe on the carpeting when I checked on him in his crib. Fortunately, the next time we visited Bob, I mentioned these conditions, and Bob explained that Justin was, in fact, not deaf or mentally retarded. His hearing was hyperacute, which meant that Justin could hear the garage door down the street close. He also had above normal intelligence.

At this time, Justin is 13 years old and is going into the seventh grade in three weeks at the local middle school. Although he is one grade behind his chronological peers, he has had less years of schooling than they, having entered public school at age eight, he never attended kindergarten, first, or second grade. Justin is in the National Junior Honor Society, sings in the chorus, loves computers, and is a total sports nut. He is getting close to independent walking, and wants to play some sport in high school. At this time, I have no reason to doubt that possibility. He still does some vision therapy, although he reads quite well, there are some minor convergence issues to complete. He also has some fine motor skills to work on. Four days each week, Justin works out at the local gym with a personal trainer and former competitive bodybuilder (named Tom Martinelli) and loves pumping iron. He is very social and confident of himself and his future. I will never be able to thank Bob enough for what he has done and continues to do for Justin. In return, I try to share with parents who have children like Justin the notion that the prognosis for children with a diagnosis like cerebral palsy is what we as parents make it. All our children need is the opportunity for a normal life. That’s what Justin got from Bob: the opportunity. What I want for Justin is no different now than it was before he was born: the chance to be whatever he wants to be.

Because of Bob, Justin is getting that chance. I used to begin my explanation of Justin’s condition with the following quote. “Imagine that your child has just been diagnosed with a condition for which there is no cure and no one is looking.” That’s what it’s like in the world of conventional therapy. Bob Doman, however, is looking. That’s why he is different, and that’s why I continue to take Justin to him.

Reprinted by permission of The NACD Foundation, Volume 10 No. 11, 1996 ©NACD

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