Olive Background

Sunday, March 15, 2009

Information and the Digestion of It

I was in pretty deep thought for most of last week.

At Jared's appointment with the mental health clinic, I learned a couple of things. Number 1, I learned that Jared is classified as disabled. The name that has been given to classify his level of Autism is PDD-NOS. In long form that means Pervasive Developmental Disorder - Not Otherwise Specified. In more simple terms it means he's got more going on than just some trouble with social situations but he's not Rainman. Number 2, because of his disability I have acquired a new way to claim an extra tax credit and qualify for community support for our family. I have access to workers who can take Jared out and teach him social skills and I have access to respite care for him so that our "family can have a break" once in a while.

This is quite a brick of information to be dropped on someone's head during a one hour appointment. It threw me to say the least.

It was difficult to hear someone tell me that my son was disabled. In my reading on Autism sites and comments from parents of such children, many argue that this is not a disability; that their children actually have abilities us regular folk don't. They say that their children are amazing and they wouldn't change them for the world.

I struggle with that idea of Jared being "disabled". He can walk. He can hear. He can see. He doesn't require machines to assist him with life. I see him as a boy with life long challenges, but not really disabled.

I also struggle with the idea of respite care. When I told Sean about it his first comment was, "Can they take the 13 year old too?" I think that sums up how I feel. Life with Jared is not always easy, but we don't long for a break from him any more than we do the other boys. I told the therapist that I didn't know if my guilt would allow me to send him away so that the rest of family could have some normal time. Our normal is with Jared and all that comes with it. I would also worry about how Jared would feel about getting shipped off for a few hours or over night while the rest of his family continued to hang out together.

We also saw Jared's psychiatrist last week and talked to him about it. I think he understood my concerns and assured me that while this was a service accessible to me, it was still my choice to use it or not. He also told me that while there was funding available to me, I also had the choice of where Jared could go. So if Sean and I needed to take time together for a few hours, Jared could go stay with a friend or with family and we could compensate them for that. I didn't need to put him in a home full of strangers. It made me feel better about the whole thing, though I don't know if and how we will take advantage of that support yet.

I am absolutely on board with the community worker taking Jared out to teach him social skills and functioning outside the walls of his home or school. While Sean and I can teach him many things, I have also found that a third party can be more effective at times.

I am still digesting and reflecting and wondering about this road we are on. I hope at some point I can reconcile the word disability. I realize it is a label that can help us get more of what we need for him and there is power in that. I am fully aware of the "business" of funding and the "politics" of medical and educational intervention.

I also realize that he needs constant supervision to complete the tasks of daily life. I wish I could say he can do it on his own, but I can't. I love him the way he is and would never want to lose the charm and character he possesses. But if I was guaranteed that those qualities would remain, I think I would want the Autistic stuff to go away. I wish he could have less struggle and less frustration. I wish his brain worked the way it should.

I hope that would not offend. I know there are some out there who would disagree with me. I am new to all of this although this has been my life for 9 years.

To his credit, Jared has been working very hard. He is having success in school again. We are so very fortunate to have such great support around us. His teacher has advocated and fought for him from the very beginning. At home he is also trying so hard. His tantrums are down. He is trying to settle himself more effectively. He really is the strongest kid I know. How lucky I am to get to be his mom.

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