Friday, January 13, 2012

Some things about life with Aspergers

I have been spending a fair bit of time recently writing a little document to give to L's Year Advisor when school starts this year. She asked for it so she can get to know L better and share it with each of his teachers so they can gain some insight about what will be helpful for him in terms of settling in to High School.

It's hard to write, for a few reasons.
Firstly, it is hard to try to sum up all that I have learned about how L copes in school and how he learns best in one page.
Secondly, I find myself feeling self conscious about how I will be perceived through what I write.
And lastly, having to do this sort of thing invariably brings on a time of grief. This time it is not too bad. But it is there, the thought that this sucks and I shouldn't have to do it. It sucks that it takes this much preparation for L to be able to navigate a change in his life. It sucks for me. And it sucks more for him.

This is what I have written so far....

"L has Apergers Syndrome (AS). AS can show itself quite differently in different people.
The problems L experiences are largely social (understanding verbal and non verbal communication) and sensory (noise sensitivity mostly, with a bit of touch sensitivity).

I will list below some things about L that will help you understand him better:

1. L can find it difficult to make eye contact with people even when he is not feeling stressed. If he avoids looking you in the eye he is not being intentionally rude.
2. L’s speech can be somewhat mumbled. This is more noticeable when he is tired (toward the end of the day) or if he is anxious or upset about something.
3. If L is significantly stressed he may “lose his words” for a while and be unable to express what he is thinking or feeling verbally.
4. L goes through phases of significant interest in one particular topic. He will want to talk about that topic all the time, and may not realise that everyone else does not find it as interesting as he does. For example, he may answer questions like ‘how are you today’ with a story about his current favourite computer game (at the moment “Minecraft”), or other favourite pasttime (at the moment a very complicated roleplay/board game he invented called “Maul”)!

Some things that have been known to cause L problems in the class room and some things that have helped manage them:

1. Too much noise- L often comments to me that it was a hard day at school because the kids were really noisy that day. This is due to audio sensitivities. There is often nothing that can be done to prevent this but it is handy for his teachers to know that he finds it difficult. L also finds teachers yelling very upsetting. This is for 2 reasons. The first is simply the noise levels. The second is that L takes things personally! L likes rules and will rarely do anything knowingly that will get him in trouble (so far anyway!) So if a teacher is yelling at the whole class L gets very upset that he was yelled at when he wasn’t doing anything wrong! This is also something that not much can be done about, but is useful information. I spend a fair bit of time talking with L about things like this and my approach is to encourage him to reason things out logically (he likes logic) and decide if he needs to take on board what is being said and change his behaviour or if he can see that he has not done anything he shouldn’t and so can disregard the message and not worry about the yelling.
2. Unexpected changes in routine- L relies very heavily on routine to get through the day. Knowing what to expect helps reduce the impact of other minor sensory variations and allows him to concentrate on the task at hand instead of worrying about what will be coming up next. In the past a plan of the day on the board has been useful, but is not relevant in High School. A brief outline of the lesson on the board may be helpful for him. I will make sure I go through the timetable with him each morning before school, and if his roll call teacher can do the same that would be beneficial (although I acknowledge probably not consistently possible!). It is worth his teachers knowing that if there is something coming up later in L’s day that he is not looking forward to he will likely not be able to concentrate on much else until the “unpleasant” event has passed. "

I am not finished yet, and I have run out of room. I am struggling to know how much to include. I want to give helpful information, without putting so much in there that they just won't read it. Every parent wants to advocate for their child, but I don't want to be seen as overbearing or overprotective. Where is the balance between being helpful and being painful?

So I will keep working on it until it is ready, then I will be the in-your-face-mother, because I have no choice if he is to have a chance at making this transition well, and I will hand it in and attend meetings with the teachers and the support staff. And I will do everything I can to help him. Because interpreting the world when you have Aspergers Syndrome is hard and confusing and I will continue to do whatever I can to help L work through each change until he has the tools he needs to do it without me. I am his greatest advocate and I have to be OK with being seen as pushy or overprotective, or whatever! This is my Job. My Life. My Privilege.

No comments:

Post a Comment

You can read my comment policy by clicking on the link at the top right of the page.