So let me tell you a story about my childhood. More specifically, my brother’s childhood and how it impacted mine. David was born in 1976, the middle child, and he was born with cerebral palsy, and it was categorized as “severe.” He could move his arms and legs, but he couldn’t coordinate them. We were a poor preacher’s family, but we needed to care for David. My parents did some research, I have no idea how much or how, and settled on the Institutes for the Achievement of Human Potential in Philadelphia, PA. My parents had to get Institute certification that they were Human Developmentalists, and I can find certificates for each of them at Intermediate and Advanced levels, whatever that means. I can also find a receipt from one of our visits, the 1979 one, for a thousand dollars.
My parents went in 1977 for the initial visit, where they were accepted and trained (and paid more upfront), and then we visited every year for several days. I don’t remember how many years we did, but I’d guess at least three or four. They trained my parents, and we met with their doctors and specialists. We met all these other families, and I had a really open view of disability in children.
The Institutes has been controversial for a while, including criticism from the American Academy of Pediatrics, but I don’t remember any of that back then.
My parents tried to make it a little bit of a vacation each time, with them taking me to the Philadelphia zoo, the Liberty Bell, Independence Hall. I know there must have been other places, but those are the ones that I remember. I also remember dad taking me to see a movie there, and the theater we found had two screens. I had a choice between some old baseball movie called The Bad News Bears or this weird space opera called Star Wars. I didn’t like sports that much, so I chose the space opera, and it completely changed my life.
At home, they did therapy with my brother. I still have a photo album of information from then, and it paints the picture I remember. Dad helped as he could, but he was also the family paycheck. Mom carried it, and the schedule was huge. It started at 8 AM and ran through 9 PM every night, with an hour off for lunch and an hour for dinner. There were volunteers who came in daily, and I have a call list for the volunteers with warnings to let us know as soon as possible if they can’t make it so we can find a sub. I know I stepped in sometimes to help. I also remember times where someone would not show, and how mom would have to call people to come in on no notice to help out.
The basic schedule involved patterning several times a day, five minutes at a time and twice an hour, on a padded table that was made just for it. That was a three-person job, with one person moving his head back and forth, and the side people moving the arms and legs to show David’s brain (repeatedly, every day, for years) how to crawl. There was also a torso wrap with straps and a wooden pole on each side, so they could constrict his chest, to improve his lungs (respiratory sessions). Five minutes every hour was “loving time”; it’s nice to know it was scheduled. Also included were 30-second teaching sessions, where he was shown cards with answers and he was asked questions, with a swatting effort to choose the right card. With number problems, the answers were usually given as red dot stickers, and they tracked his right answers. Through that, we knew he was not affected mentally by his condition.
Later therapy, after the first couple of years, included all sorts of new devices. There was, at one point, a human-sized spindle, where David was strapped on, and it was gently rolled. There was a strap-covered chair to teach him to sit up. There was a suspended table that was swung around. There was a merry go round contraption, where David was strapped to it to teach his body equilibrium or some such. He was spun around on the floor, and then it was mounted to a wall and he was spun vertically (think Duran Duran’s “Wild Boys” video). There were straps, and his ankles were in them as he hung upside down and spun. It sounds kind of awful, but I remember him laughing a lot over these. There was a “gravitational device” which suspended David to show his body how to crawl on his hands and knees (he never developed crawling off his stomach). In some ways, therapy was like being on the playground merry-go-rounds regularly. I would also like to point out that the therapy table and other devices were all made specially for the therapies; lots of plywood and boards made just for the occasion. It was all just part of the furniture in our houses (we lived in Loretto and later moved to Abingdon when we did this).
I also remember that, a few years after we stopped therapy, we used to go to someone else’s house and do therapy for their child. I was forced to tag along, not to do the therapy but to be watched over rather than leave me at home, so I have clear memories of that. One of the other kids had a smaller dirt bike and a big back yard, so I got to ride that around for some of that time.
Did any of this help? David learned to crawl, and we worked hard to get him to crawl regularly, with a big early goal of him crawling over 1000 feet in one day, which we met. At the height of therapy, he was able to clearly say a few words, though when the respiratory therapy stopped, he lost that, going back to general sounds. There are multiple pages of things he learned from flash cards. It was intense, and there are so many pictures.
There are also a few newspaper articles, which were done by local papers to try to help us find volunteers. Good human interest stories, with pictures of the family and therapy. There’s also a question asked of my parents in those: “What has all this special attention for David been like for his eight-year-old brother Bill? ‘Bill will be alright,’ said Reverend Abbott. ‘We and the Institute have tried to make sure we don’t leave Bill out of anything. He understands we have to spend a lot of time with David, but that it will all one day be worthwhile.’” It goes on to talk about how helpful I was, and how I prayed for David every night.
It was a massive effort, and I know it improved David’s life some. I don’t believe it was as helpful as they’d hoped, but they really did a huge thing for years because they were trying to do the best they could for my brother. In the process, for much of the time, I was neglected, but as a friend pointed out, if they hadn’t been busy with David, they’d have turned their focus back to controlling me more regularly. I had friends and could entertain myself, either with toys or books. I spent a lot of time at my friend John’s house, or riding bikes and flying kites with him, out of the way of all of the people in my house.
David and I were extremely close. I was sleeping in bed next to him (there were rails to keep him from falling out of bed or getting on my side too much), and I kept him laughing anytime we were together. We stayed close, even though he was nonverbal, until I left for college.
There is so much story of my brother. David was a huge part of my life, and he changed what I expected from life in so many ways.
Bill Abbott, poet, web page 