Monday, December 10, 2012

Lean On Me

Pervasive Parenting
By Kodey Toney
Lean On Me
Another weekend with Partners in Policymaking means another great session of information. The problem is that there is so much data crammed into a small amount of time. However, I always come away with something that makes me reflect a little more and makes me think, “Oh, wow. That was awesome!”
One of those things this weekend was when guest speaker Guy Caruso, Western Coordinator for the Institute on Disabilities at Temple University, spoke to us about “Continuity Across the Lifespan”. His presentation was about helping people with disabilities transition from school to work, and to living on their own. The point was that they should have as little support as possible, but as much as they need. As he discussed this though I remembered a couple situations we have had with Konner recently that I felt go along with this idea.
So far, almost all the presenters have asked us what we want for our children. The main answers are: to be happy, to live independently, and to have as “normal” a life as possible. Of course this is what we want for any child, but especially those with a disability.
So in a recent IEP for Konner we discussed his teacher’s aide. The question was whether or not she should be in the classroom full-time or just come in and out throughout the day. My answer was, “No offense, but our ultimate goal is to get rid of the aide.” Isn’t that what we’re all working toward?
How many of you would say, “Hey I wish I had someone to follow my child around all day and make them stand out from the other children.” I would guess very few. Their obvious issues are enough to make them stand out so we don’t need to draw more unwanted attention. You might as well put a big sign on them saying, “Hey, I have a disability.”
There is also the fact that our children need to be independent in the classroom, or at least as interdependent as the other children. Other children look to the teacher and other students for help. They don’t have a person sitting in the corner to help them when they have outbursts or need redirection (at least most don’t). In a year or two I would like to see no aide in Konner’s classroom. That would mean that his current aide has done her job in helping him cope with issues he may have.
Interdependency is good. We all are interdependent. That doesn’t mean we have to rely on others as a crutch. That doesn’t mean that we have to have the person next to us sign our name on everything even though we know how. That means that we can work together to get to a certain goal. We all depend on our families to help us through tough times, or to watch our children when we have things to do. We depend on our friends to help us to give us a ride when our car breaks down, or to be there when we need support. We depend on our co-workers when we need help finishing a job, or when we need advice on how to deal with an issue. So why should our children not be interdependent on classmates and teachers?
The aides are like therapy if you think about it. They are used to help you move toward an ultimate goal which is to do things on your own. If you have physical therapy you are just using it to get to a point where you don’t have to use a wheelchair or crutch anymore. The occupational therapies are used to help your child deal with sensory and fine-motor issues so that someday they won’t have to have therapy anymore.
Aides are necessary, but they are also only meant to be temporary in most cases. I felt it interesting that one of my classmates in Partners who is a self-advocate said she always saw her Special Education teacher as a baby sitter. This was not the goal when we put these people in the classroom. They are a tool (no offense). They should be used sparingly, as little as possible, but as much as needed.
Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

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