I can't tell you what it was like to grow up with a disability. I only know what it was like to grow up as me, Marty. I know that I was not as strong as other children. The doctors called it "Benign Congenital Hypotonia", an unusual kind of Muscular Dystrophy. It just meant that I was weaker than the other children. I went to a pre-school for the handicapped a long time ago, and I remember seeing children there with cerebral palsy and other types of problems. I had weak muscles in my mouth and they made it a little hard for me to talk, so I went to a speech class to learn how to speak more clearly. When I went to school in the morning, it was hard for me to climb those big steps to get on the bus. When I arrived at the school, the bus would back up to a big platform, so it was easier for everybody to just walk off the back. But I didn't stay in that school for long.
After pre-school, my family moved out of the city and I went to regular schools from then on. Things were harder for me in "regular" schools. I had to climb up and down those big school bus steps both to get on and off the bus, twice a day. And I had to walk farther to get to my room. One of the scariest things was if the bus was late, everybody else would already be inside the school. I would have to try to open those giant heavy school-building doors all by myself. What if I couldn't get one open? I worried about that. I knew that I would be in big trouble for not going to school, even if, really, I was just trapped on the wrong side of the door.
Sometimes I would do what everybody else did in gym class, and sometimes I would just watch. I could barely run or kick, so of course nobody ever wanted me on their kickball team. Whenever they had a race or a contest of any kind I would lose, so I just stopped trying. The gym teacher had never been taught how to teach children with physical differences, so he didn't know what to do with me.
Luckily, I did very well in science class. I really liked the week in second grade when we studied the planets: Mercury, Venus, Earth, Mars, Jupiter, Saturn, Uranus, Neptune, and Pluto. I've remembered them ever since. I read a lot of books, like the Encyclopedia Brown and the Danny Dunn series, and science fiction by authors like Isaac Asimov and Ray Bradbury. When I was growing up, calculators had big glowing red numbers on them. I remember trying to stay up late and read under my covers by the light of the number "8888888". Until the batteries wore out.
My mouth was another problem. If I didn't pay attention, it would fall open. Not a lot, like a yawn, but enough so that people would keep telling me I should close my mouth. So I would. And then a few minutes later I would be thinking about something else and it would open again. Another few minutes later I might drool a little on my shirt. So most of the time I had a wet spot on my chest. It didn't bother me too much, except sometimes when I went outside on a cold day it would make me even colder.
My classmates used to tease me a lot and call me names. I couldn't run fast or jump, and I drooled a lot. Sometimes they called me a "teacher's pet" because they thought the teacher was being extra nice to me. I always had "cooties" or was "it" -- but I could never go fast enough to tag anyone. They would make fun of me by running away and then walking real slow until just before I caught up. Other children thought it was fun to steal my hat and play keep-away. I hated my classmates, and hated everything they liked. When they tried to be nice, I wouldn't trust them. So I didn't have a lot of friends.
After about fourth grade, I started having trouble with many of my classes. They were boring, so I didn't do the homework. I got really good grades in the classes I was interested in, like science and math, and really bad grades in classes I wasn't interested in, like English and Social Studies. Everybody said I was a smart child, and it was true, but nobody understood why I didn't do well in school. The teachers had never been taught how to teach someone as differently-smart as I was, so they didn't know what to do.
In high school, I became really interested in computers. My father gave me my very own computer which I spent all my time programming. By the time I graduated, I knew a lot about them, and I knew I wanted to be a programmer. In fact, I already was one!
My life was much better after I left high school. I tried a "regular" college, but it was just as bad as high school. But then I found a college that was much better at teaching me things that were interesting. I learned lots of neat stuff, including some of the same stuff they had tried to teach me in high school.
I'm much stronger now, and I don't drool any more, but I'm still not as strong as other people. I would still lose a race or an arm-wrestle. When you become an adult though, the contest changes. Instead of having to use your muscles, you have to use your brains. When it comes to that kind of contest, I can usually win. But I don't tease the losers!