Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Tuesday, October 21, 2008

Behavior Modification

This post was actually a reply to a discussion about ADHD and autism. They wanted to know what we had done that gave us success over the disorder.

Having a 16-year old who has overcome so many obstacles in this life, I gave some background on how I raised my son. It was not easy, by any means. And, I had very little help, except for the internet, which back in 1992-1996, was not the big, beautiful web we have today. Most of what I did is trial and error and whatever worked. Here is my response and take on behavior modification.

Hello, All,I will try to remember what I did because he is now 16 and it is hard to think back so many years.

When he was a baby, we swaddled. Without it, he would hit the walls of the bassinet every other minute and no one got any sleep. Actually, the first six weeks, he slept in a stroller, swaddled in the basement. Now, before you call me cruel, it was the only place with no light and no noise. We used a baby monitor to know when he "really" woke up.

I learned very early on that he needed a routine or we would have a basketcase on our hands. I went back to work early and had a babysitter. Thing was, I walked in with a schedule of two pages! Everything was listed down there from when he would eat to when he probably made a bowel movement. She thought I was crazy, but after two days, she was amazed that everything I wrote down, complete with times, was accurate. If you followed the schedule, he would be fine. If not, screeching baby at ten o'clock.

His food has to be a certain temperature. The bottle nipples had to be a certain size. Too big and he would choke, too small and you got screeches. He couldn't figure out breast feeding, so I didn't. Of course, he had favorite foods and that was it.Life took on a very ordered tone. He has more autism/ADD than ADHD. Not very hyper, though he rocked and flapped regularly. He hated loud noises, crowds (no birthday parties or movie theaters to this day), bright lights and certain materials.

I am saying all of that to say this. The more I kept to a schedule, the calmer he was and then we could do some work together. Change had to be brought in very slowly. Everything had to be introduced. Foods, people, places, school, toys, holidays, etc. For example, a new person was never just brought into the room. He had to hear their voice somewhere in the house and we would wait to see if he would get curious. Most times, not. When he was around 5, it took him a year to speak directly to my best friend who was over almost every day.

As for language, he started talking around 12 months and then stopped. He didn't use regular language again until school. He made up his own language and used sounds. I didn't care what it was, it was communication and we responded. We called it Andrewisms. He still does it to this day, creating language. An old one was Fuf-fuf, it meant cartoons. We figured out later that I kept calling silly cartoons "fluff" and he made up the word to use when he wanted to watch them. Today, we have "linner." It means the meal between lunch and dinner, like brunch is the meal between breakfast and lunch. Whatever it is, we use it.

I am sorry this is long, but I feel very strongly about this. We hardly had any help. I once had a director of an autism center ask me how we taught my son humor. I told her, we laugh a lot and love comics, cartoons and jokes. If he didn't get it, we explained it. We even taught him what laughter sounded like. After many years (like around 10 years) he finally understood. The first time he laughed out loud, I cried. Most of his childhood, he hardly even smiled. Now, all his teachers remark about his cynical, sardonic wit. It is not a "monkey," but his own take on what we taught. EVERYTHING he does today, came that way. As he got better, I built in change and flexibility. Now, at 16, he can accept change on a dime; something almost miraculous in the world of autism.

I don't want anyone to get the idea it was easy. Many times homework was finally finished at 10pm. Or just not finished. He didn't get an aide in school until 5th grade and they promptly took it away in high school. He has the smallest amount of accomodations and hardly any speech and language help. He hardly ever get an A in a class, but his Cs are golden to me. We hardly ever went anywhere, including church. I didn't see the inside of a movie theater for nearly 12 years. And, he was not with me.

I am thoroughly with McDannells on this. We have to teach these kids to be confident in themselves and that they will find a place in this world. Excuses don't matter to the world at all.

Other than that, I give this piece of advice. Do what works. If you have to empty the cupboards and teach fractions using bells, whistles, every measuring cup and spoon, and food coloring (my personal favorite!), do it.

And don't make a monkey out of anyone. I would rather my son be eclectic and innovative than a drugged zombie working in a factory somewhere.