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KODEY TONEY: Let it be

January 31, 2014

A couple weeks ago Jen and I went to the Wrightslaw Conference in Edmond. This is the second time we attended the event, and I’ve talked in the past about it, but I will briefly tell about it again for new readers. Attorney Pete Wright speaks to families, educators, and other professionals about education law. He gives advice and tips to help parents navigate the world of education and Individualized Education Plans. Something he said at that conference gave me an idea of what to discuss this week. It’s about labeling children with disabilities; especially those with autism.
Wright stated that most schools have the same mentality when it comes to coping with children on the spectrum. They think, “Give me a label and I’ll give you a place to put them.” Most of the time it’s, “Oh, he has autism we’ll send him to this room. Wait, he can’t speak? Well, we’ll send him over here. Oh, but he can speak he just has behavior issues? Well, then he needs to go over here.” Often they don’t even give the children a chance to perform in the mainstream classroom before just sending them away.
This is unfortunately a grandfathered concept that we have to break in order to give our children the best possible education. Why is this? Because the mentality has always been to do whatever is easiest for the school and not what is best for the child. The system has felt this way for years and they have to find a way to vacate that mentality.
It’s no wonder parents are afraid of labeling their child. When we label them they are usually sent away like the misfit toys. Nobody wants that for their child.
This very thing happened to a child I was advocating for last year. The school felt that the child, because he was non-verbal and had behavior issues, could not conform to the classroom. The problem was that because he had communication issues he had behavior issues. These things cause concern for him being in a classroom and disrupting the other children as well as lashing out at others. While these are legitimate concerns, it takes someone working with him to find ways to communicate to lower the behavior problems and in turn helping him to work better in the classroom.
Think about this: If you were in a foreign land and really needed to talk to someone about finding something as small as a bathroom, or as big as the airport, but you couldn’t speak their language how would you feel? Angry? Scared? Frustrated? Defeated? This is how these children spend their lives and they need an interpreter to help catch their flight and use the restroom.
Labels have good and bad qualities though. In order to get the services needed to help your child improve and succeed you have to have a label. However, if you label them it gives administrators something to use to “place” the kids and put them away from their peers.
We argued at one IEP meeting, in the early years, about whether or not to label Konner as having autism. One of the ladies in the room kept saying, “You don’t want to give him that label. You don’t want to put autism on his IEP.” Our response was always, “Yes we do. If we don’t we won’t get the services that we need to help him.” In fact she argued that she didn’t think he had autism despite the evaluation from a clinical psychologist sitting in front of her proving otherwise.
I’ve always said that we have been fortunate that Konner has been in the mainstream classroom from the beginning, but I know that many others have not because of their diagnosis. The fact is that many teachers don’t know how to handle having them in their classroom. Most have not had to and feel that they don’t have to. Others feel they could probably cope if they had an aide, but the school can’t afford to hire one. And there are others who feel that having a child in the classroom with a disability will take away from the education of the other students. I have discussed this in the past, and won’t hit on too much, but I will say that I feel everyone involved benefit in the end from having a child in the classroom; especially on the social side of things.
What we have to do is find a way to not “label” a child, but give them an identity to help them get further in life. We have to find their voice to help them be themselves and not their diagnosis.

Kodey Toney is a parent of a child with autism. E-mail him with questions or ideas at pervasiveparenting@hotmail.com. You also can find all columns archived at blogspot.com.

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