The Secret

The Special Education Coordinator had several conversations with me regarding Dear Son’s next placement. At issue, was finding the “appropriate” school for him. At that time, Dear Son’s primary disability was listed as physical since they didn’t make statements with regards to their mental disabilities until the children are a little older. I had asked to see the school they recommended as well as two classrooms (schools) above his level and two schools (classrooms) with lower functioning children than Dear Son so I could understand the difference. Then, I could see for myself as well as check out the classrooms to see how Dear Son would fit in. I was very new to the whole Individual Education Plan (IEP) and Multi-Disciplinary Conferences (MDC) that were required to place Special Needs children, so this exercise would be a good learning experience. Also, as Dear Son’s mother, I needed to be certain that this indeed was the right place for him. While I certainly didn’t have the expertise of the professionals, I did know my own Dear Son and I wasn’t about to take their recommendation without checking it out for myself.

I had toured a few classrooms when we met at a school for extremely lower functioning children. I thought I had seen it all until I got here. From the outside, there was nothing different about the school but inside, would be a different story. I had heard some things about this school, some of them negative, but inside, well, I wasn’t sure if I could handle it.

Up to this point, I had been somewhat sheltered, I would say. Dear Son was quite young and I had about zero experience with mentally and/or physically disabled children. In fact, my experience with Dear Son was about it. I had tried reading some of the books or “recommended” reading from the Easter Seals however I quickly learned that they scared me more than they helped. I abandoned that and figured I would just take things as they came up.

I walked into the school and they took me to a large gymnasium of sorts where there were umpteen kids. The children were doing all kinds of things, none of them structured, from what I could gather. The children were all severely mentally and/or physically disabled. It was the scariest group of children I have ever seen. To this day, I have never seen a group that frightened me as much as they did. I looked around and the whole room was extremely active. I had a hard time figuring out just where I should look since there were so many kids moving around. The children who were severely mentally disabled seemed to be mobile; some were in wheelchairs but most, from what I can recall, were ambulatory. I saw one or two standing on their heads and other children doing all kinds of things that just made you shudder. Most of them were not safe. I was worried some of them were going to get hurt but I didn’t know where to look or what to say. All I knew was that Dear Son didn’t belong here and I wanted to get out now. Suddenly, I felt a hand in my hand. I went to pull away quickly when I looked down and saw a pretty little girl there. She had grabbed my hand to hold it. I stopped pulling away and held her hand.

She began talking to me and soon I felt at ease. I don’t recall that she was mentally delayed although I am sure she had to be if she was there. The school seemed very short staffed and I was thankful that this was not an appropriate placement for Dear Son. I thought about this little girl and how she probably saw my fear when I came into the room. She read my face and immediately came over to me to hold my hand. She was a sweet little thing and I was soon embarrassed by my reaction.

It was just one of the things I learned about that year and over the years. There isn’t anything to be afraid of when people are mentally or physically disabled, it’s just different. I think back to my own pregnancy with Dear Son and when they did the prenatal testing for mental retardation. The test came out normal. I remember being relieved that I didn’t have to worry about that, as if that would be the worst thing that would ever happen to me. That’s how pregnant women think. That’s what we are taught to think.

I remember too going to Dear Son’s school these last few years. I met the kids in his classroom and used to talk to them when I came to pick him up for a medical appointment. They weren’t scary kids. All had varying degrees of mental disabilities and some of them had physical disabilities as well. They were friendly kids, they were nice kids, they were kids you’d be proud to know. I remember sitting in the front row at Dear Son’s eighth grade graduation when his classmate came down the front stairs after receiving his diploma. One of the high school kids behind me said to another adult, “I love that kid”.

I have learned over the years that children with mental and physical disabilities are not scary people. They aren’t too be feared. They are just kids. They are loving. They are happy. They are sweet. I never in a million years dreamed I would fall in love with them, but I did.

Society makes them scary. We perform all of these prenatal tests and when they aren’t perfect, we think our lives are over. Nobody bothers to tell us that it’s o.k., it just might be different.

To an outsider, it may appear that we got the raw end of the deal, that our lives as mothers are somehow shortchanged because we have children with disabilities. That would not be true. Motherhood has not been any less rewarding for me because I have a son that is severely disabled. It might even be more rewarding but I don’t know since this is the only life that I have.

I do know this though. We think that if our children are not born totally normal that their lives aren’t worth it. But the secret is, that it doesn’t matter in the end. Motherhood isn’t any less rewarding if your child is disabled. That doesn’t mean I wouldn’t want Dear Son’s life easier or that I would like my life to be easier at times. It doesn’t mean I wouldn’t want my child to be normal. It just means that life isn’t over when your children aren’t perfect. I am lucky I learned “the secret”.