Wednesday, November 19, 2014

Uneven- How my brain works

Last Wednesday I went before our state board of education to speak along with our state's disability rights center about the current lack of enforceable regulations regarding seclusion, and restraint complaints in our state. There are regulations in place, but no real way for the board to enforce them if a parent files a complaint. The complaint process is really a meaningless gesture the way it's all set up at the moment. I strongly feel that needs to change.

As passionate as I am about having strong laws that protect vulnerable children I almost as terrified of public speaking. I don't like being the center of attention, and I don't like speaking in front of groups of people. This combined with news cameras, and closed circuit television really was my idea of anxiety hell. It was so many of my fears rolled into one event.

I sat there listening until it was my turn. The people that went before me were better at public speaking, but not necessarily in getting to a point that makes sense, and is action oriented. You only have three minutes to speak. One needs to make their point quickly, buy effectively, as well. There needs to be a directive at the end of what, and or how you'd like to see your idea implemented into public education.

I heard some good ideas from educators, and parents. One in particular spoke about the need for movement breaks being implemented into the classroom environment, Those of us familiar with autism, and sensory processing disorder call these sensory breaks. All kids (and arguably adults, as well) need these breaks. It's important to our whole mind, and body system to give our bodies the opportunity to rebalance after sitting for a prolonged time. Children especially are not built for long periods of inactivity. I loved her idea, and that she did a demonstration. What I waited for, and didn't hear was how to implement this activity in every class period. What I waited for, and didn't hear was how there have been numerous studies recently about the need for more movement being incorporated in children's school days, or even what solutions she is specifically asking the board to implement.

I noticed that many were pretty good at speaking while looking at the board members, and really just having fluid body language that I didn't have. It was taking all I had to read without losing my place. I also thought I might throw up. My voice shook, but the words came out as I wrote them. I was told I did a great job, and my testimony seemed to really make a big impression. I was approached by a few of the board members who had questions, and who wanted to get my contact info.

It occurred to me as I was on my way home what impression I left on all those people in that room. A willowy,  thin, well dressed woman who was was well spoken, and capable. That was something, wasn't it? I'd never thought of myself that way, and never thought others did, but in this moment I saw a glimpse of what I can look like in a small sliver of time to others. Strong, and educated. Privileged, even. The only way I could get through the entire ordeal was to tell myself that I was just as good as anyone else there. I had just as much right to speak, and be heard as anyone. That was a novel thought to me. It truly was. I repeated it over, and over in my head as I awaited my turn to speak until I almost believed it.

What they couldn't know was that I could never have gone if my husband hadn't driven me from two hours away. Driving on the interstate to unfamiliar places is not something I can do. It may as well be located in outer space if it were left to me to get there from far away. It's not laziness, or just anxiety. It really is beyond my capability to drive that far away, and find my way around without getting lost, or so completely overwhelmed that I couldn't function. All the little steps of traveling seem so hard for me. I feel like a child. These are the times that I know I am not capable, and am not strong.

But, you know what? This is a big part of what autism is.

What I am good at I am really good at it, but for everything that I excel there is that one everyday thing that others do all the time without thinking about that I need help with. Where others stay in this zone of average learning, and skills autistic people's scores on the same activities would be all over the place zooming way above average to way under in some places.

This is especially hard for me to get Bubby's school staff to understand. Here were have a a 13 year old young man that memorizes a ton of trivia, and facts. He's always eager to share his knowledge. He's able to set his own bedtime, alarm, and make his own hot breakfast in the morning. He makes his own chore charts, and tracks his own chores done through the week independently. Yet, he just learned to tie his shoes last month, and still needs help sometimes. Despite being in 7th grade math he cannot count money very well, and can't calculate change at all. He can't send a text, or email on his own. So many things that one would assume he could, but can't.

But, that word there. Assume. That is where so much misunderstanding comes from between neurotypicals, and autistics come from. They assume because we can X, we can Y when abilities for us aren't that simple, or straightforward.

Neither is learning. I see the same mistake being done with IEP goals. Educators believe that one must possess a certain skill to move to the next level. Our learning process is not linear. We jump, skip, and sometimes never attain some skills. Others come from thin air as if we attained them in our sleep without effort. I know that is how it has been for me. I know what I know, and learn what I learn when I do. No amount of trying to force information, or skills has been successful. It's like my brain is a big computer that is constantly downloading information behind the scenes, Sometimes, something that has been stalling for years will click, and I will suddenly be able to do, or understand it. There really is no rhyme or reason as to why it suddenly all clicked into place. It just did, and there is no way to know when it was going to happen. No amount of repetitive learning would have hurried it along.


  1. I laughed at your comment about counting change - I can't say that it has anything to do with autism - have you ever been to a fast food place and the cash register was broken so the person behind the counter had to count out the change on their own? You would be surprised at how many times they can't do it - unfortunately it is becoming a lost art.

    As for a list of things our special kids don't do at the same time as other kids, well why bother - our kids learn skills on their own schedule and comparing them to others is not productive. My daughter didn't learn to rid a 2 wheel bike until she was in 3rd grade and she still doesn't do well with tying shoes at age 15 - God bless whoever invented Velcro

    Never give up - you are a great mom

  2. I don't mean that my son can't count back change to the dollar. I mean if he gave the cashier a $20 bill for a purchase amount of say $1.35, and the cashier gave him back a dollar he'd not think twice. He has no concept of how much money things cost, vs how much he has. He can't count money very much at all. Most people could at least estimate cost. I always worry people will take advantage of him. He gets allowance every week, and b-day money, which means he makes purchases at least once a week on his own. I let him go in, and buy stuff on his own, and just hope people will be kind to him, because it's important he practice, and build confidence.

    It's not really important to compare skills other than to figure out what a person might need in the way of accommodations. However, just because someone might need help with one thing that doesn't mean they can't do another thing well.

    I don't have that competitive mindset most moms seem to have when it comes to kids. I'm not saying it's a bad thing, so don't get me wrong. I'm not judging others for having strong feelings about wanting their child to do well. I just have never really cared if my kids outdid anyone else's. I don't put any personal stock into my kid's achievements It doesn't make me feel bad that my kids need help with things their peers don't. I don't see it as a personal reflection on me. I always get comments like yours where people try to make me feel better. I wasn't feeling bad to begin with. They'll do what they can when they can. No worries on my end, other than to make sure they have to proper supports to be successful.

  3. I completely agree with this and experience it all...including the counting change and driving...yet on the outset I also look very privileged put together and educated but my day to day is a whole other story! thanks for sharing!

    1. I think it is maybe a bit harder for ladies on the spectrum in this regard. We tend to have a lot of masking behaviors that we employ to cover up times when we are just getting by, and about to fall apart. If anyone ever saw how cobbled my coping skills are they'd know what a mess I can be sometimes. I am just very good at concealing my less than stellar moments.


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