Sunday, June 13, 2010

The most important things I have to remember by heart

Some will say that giving birth to and living with a child with Asperger's Syndrome is a curse. Imagine teaching someone how to look at people in the eye, or, how to crack a simple joke, better yet, understand one. Or think of how you can work on conjuring an "acceptable" smile, or teaching him how to pause between sentences as "normal" people would. Let me tell you, it's hard. Most parents are concerned with their child's bad behavior, worrying about peer pressure, or being too independent, too early. Parents of kids with AS worry about totally different things.

I've consulted several books on how to understand, help, and live harmoniously with my child who has AS. The books all helped but I believe the best way to go about it is to listen, observe, and remember. You have to listen to him and try to "get" him. He doesn't talk like other normal/neuro-typical people. He talks like he was reading off an encyclopedia in a monotonous voice which makes it difficult to appear interested in whatever he's saying. You also have to observe him and see what ticks him off, what excites him and what calms him down. It may be sights, sounds, smells or textures which gets him ticked off. He may be excited about a certain activity, person, video game or toy. A mother's job is to remember by heart all these things so it can be avoided, dampened or enhanced.

One entry about this is really too short. To better understand what my son is like let me quote a part of one book I'm reading right now: THE ASPERGER'S ANSWER BOOK by Susan Ashley PH.D.

What your child with Asperger's Syndrome wants you to know: (Part 1)
  • I may overreact for no apparent reason, but usually I have a reason, I just can't say yet.
  • Just because I was able to control myself for several days doesn't mean I can today
  • I don't misbehave on purpose, and I am not trying to defy or annoy you
  • Don't expect me to be smart in every subject just because I have a great vocabulary
  • Please don't tell me to "work it out" with my classmates, I have no idea how to do that
  • I love to talk and do not know when to stop. Gently remind me to "hold that thought."
  • I am at my best when every day goes predictably. Please try to have a routine in class.
  • Please warn me in advance of upcoming changes since I do not cope well with change.
  • Keep a close eye on me in group activities because I do not do well in groups
  • I am slow to respond if you ask me a question so please give me time to answer
  • My brain does not work well when I am interrupted. I usually insist on starting over again.
  • Please do not insist that I look you in the eye. I am very uncomfortable with eye contact.
  • I don't understand jokes or sarcasm so you might have to explain them to me.
  • Even though nothing anyone does can cure me, I need your support every day, all year.
It's a 24/7 job, and I'm happy to be doing it, for him. He's a wonderful person. Compassionate, sensitive, and loving. It's unfortunate that not everyone who crosses his path will understand him. But, I'm excited for the few who will get to know him and realize what a good person he truly is. And for that I'm truly blessed.

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