From the archive: Originally posted 4/29/13
A thought that’s been weighing heavily on my mind lately is one that’s not going to be popular. It seems to go against things that are important to me and many others. But, if I’m going to be true to myself and to Josh, I have to say it. Out loud.
My son IS different.
Different is a good thing in lots of ways. It’s his extra chromosome that allows him to remain oblivious to certain things that make the rest of us miserable – taxes, politics, terrorism, money, peer pressure, prejudice, etc…
His biggest fear is when the next thunderstorm will be. And let me tell ya, when it comes, it is a BIG deal. It’s also that extra chromosome that makes it almost impossible to get him to go outside in the rain. Part of it is because the power could go out. Part of it is the loud noises. But he will be the first to tell you – “I HATE STORMS!”
So it’s my job, as his mom, to make adaptations and accommodations to his world, whenever I can. I can’t stop the rain, but I can make sure he has a flashlight beside his bed at all times. He also has a cell phone that he can use to call me if I’m away from him when it starts raining. (He doesn’t even like for me to be out in the rain.)
From the beginning, I’ve adapted our world to make it easier for him. The bottom shelf of the refrigerator has always been his. It’s where he can find the applesauce, yogurt, and fruit that are ‘his.’ It’s still that way to this day. Routine is also important to Josh. Everyday things like the snacks in the frig make him feel safe and in control.
Ok, so that’s different. Most people don’t care about where their snacks are. But is it impossible to deal with? No. Does it make him less of a person? No. It’s just different.
He does pretty well staying by himself for short periods of time. He enjoys the fact that I’ll go to the store without him and he’ll have some “peace and quiet.” But, any extended amount of time without supervision could be hazardous. His problem solving skills aren’t what you would call ‘normal’ for a twenty-six year old man. For example, he likes to be able to heat up his own food in the microwave. It allows him the freedom to set his own schedule. He often says “Look Mom, I did it. By myself. Nobody helped me.”
He NEEDS time to transition. And from what I’ve heard and read, that’s ‘typical’ for someone with an extra chromosome. We had that written in all of his IEPs. People in the schools were ‘trained’ to accommodate him with extra time to move from one activity to another. That didn’t stop a male aide from trying to rush him from the lunch table before he was ready. The aide was surprised to get an elbow in the leg. Just because people are aware of what accommodations are needed, doesn’t mean they will always provide them. (But that doesn’t stop me from trying. How many times have people who use a wheelchair had to fight for curb cuts or ramps in order to get access to a public building?) Josh was suspended for two days for “violence toward a teacher” after the lunch incident. His behavior did not conform to the accepted ‘normal’ and he was punished. At least as far as the school was concerned.
I’ve thought about this incident a lot in the past few months. It reminds me of the difference between equality and equity. I don’t want Josh to have ‘the same’ as everybody else. I want him to have what he needs in order to compete and to be accepted. I can’t say that Josh is just like everybody else and expect his needs to be met at the same time.
He is: a thinking, feeling adult.
He is: deserving of respect, love, and understanding.
He is: funny, stubborn, musical, and imaginative.
He is: difficult to understand, unless you know him.
He is: different.
And I love him exactly the way he is.