Tuesday, May 7, 2013

No matter how you twist it, it ain't funny



My Kids: The reason I get 
up in the morning. The 
reason I drink at night.As parents, we are confronted with many things, be it the gross and nasty; finding assorted body fluids in places we're not used to finding them, semantically challenging; "just because I say bad words, ...", and the many crazy things that kids do;"Why is my ipod in the toaster?" They could have been upsetting at the time, but eventually we learned the lesson, drank the beer, and then found humor in it. 

However, when the principal calls and tells you that your kid has thrown chairs, pencils and hit a teacher, there is nothing funny about that, ever. In the world of Autism, bad, violent behavior is not part of the diagnosis. The behaviors most often stems from frustration. Many of us have felt this way  when we've asked a kid to complete a task they have chosen to ignore; "pick up your coat." And after several requests, the kid still hasn't done it, which causes you start screaming, "PICK UP THE COAT. I TOLD YOU A MILLION TIMES TO PICK UP THE COAT." And that is when we have to walk away and take a breath before we list our kids on Ebay. We all know what frustration feels like, but for many people with Autism who cannot voice their frustrations, and are not being understood, aggression is usually the next step.

#3 was guilty as charged for throwing a chair and hitting a teacher. But, with Autism, you just can't take actions at face value, there is usually a whole journey that they take to arrive at their actions.  As parents of children with Autism, we have to look for the triggers that caused the aggression in the first place. The scope of possible triggers is large. For some kids, it can be a humming light, for some, the pitch of someone's voice, for others, the smell of soap. On that day, I am sure #3 was overstimulated by the transition to library and then pushed over the top by a classmate. When he was disciplined for running around the library and instructed to sit in a chair, that was his breaking point. So instead of sitting and decompressing, he launched into his own version of Twisted Sister, "we're not going to take it anymore." He wasn't really capable of saying "excuse me, I need to be redirected with a little more pizazz and some sensory input."

When he was transitioning from pre-k to Kindergarten, we asked for an aide to accompany him throughout his school day. The team did an assessment on him and determined that he was too high functioning. He started Kindergarten independently and his teacher, who has an Aspy-son herself, was very in tune with him and kept data on his behavior. Throughout the year, he had bad days, good days and many great days. When his IEP meeting came up again, we voiced our concern about his attention seeking behavior and requested an aide for first grade. Once again, the team determined that there wasn't enough data to warrant it. As educators, the IEP team knew that he would benefit from having one, however,  there were many hoops to jump through to get one.  I wondered what needed to happen to make him qualify for an aide. And it made me angry to realize that he needed to fail before he would qualify to get the help he needed.

My friend Becky, a social worker and Autism sympathizer, managed to shift my paradigm on the situation. "Yes, he threw a chair, and yes, he physically abused the librarian. And if he had an aide with him, he would have been redirected long before the behavior could have manifested. You now have the data he needs to get the aid. It couldn't have happened at a better time." She was right. It's an awful feeling when you know your kid was set up for failure, and it's awful to hear that your kid did something to hurt another person. But because of that, the paperwork has been filed to provide him with an aide next year. 

As a mom dealing with so many temperamental personalities, I choose to be proactive instead of reactive. I prefer to make the necessary changes to avoid problems rather than deal with the problems after they have come. I remember a conversation I had with an assistant principal at #1's school when I was really angry about her lack of support for the special education teacher and aides, and I asked her, "This class is over-capacity. When you have too many special needs kids in a room, that is when things happen, kids escape and bad behaviors accelerate. What are you going to do here? Are you going to be proactive or are you going to be reactive? You better be prepared to take the blame for your choices." She chose to be reactive. But I guess that may be the policy in Baltimore county; "Don't fix it until I am forced to."

For many parents who have to fight this battle, it saddens us when our children are put into situations where they fail. We have adopted the ideology of not setting them up for failure, and try to encourage lessons in a positive controlled environment. But when we send them to school, we don't have a complete say. Their educational experience is a cooperative effort and sometimes they don't see the need for things we request just because they don't know our kids like we do. In many cases, over time, the team sees the validity in your comments and other times, that is when you have to go to mediation. 

Becky was right. He was allowed to fail in a controlled environment and the need for an aide was noted.  I just wish there was a better way. Vodka anyone?






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