Wednesday, December 12, 2007

A New Start and New Inspiration

Well, Ben was diagnosed with autism three and a half years ago. At that time, he had very little meaningful language, a few stimming behaviors, could not play functionally with toys on his own, was non compliant, but was generally easy going and non agressive. Fast forward three and a half years. He still has little to no meaningful language, many more stimming behaviors, still can not play functionally with toys on his own, is still non compliant often, not quite as easy going as he used to be and is growing more and more agressive. That said, he has learned a little sign language, and the basics of picture exchange. I've tried many, many supplements, vitamins and more than one special diet in the past three years. I've been doing speech therapy and occupational therapy since he was diagnosed. I've done ABA for the past year and a half. However, nothing has changed him in the way that I've hoped. He's gotten better in some ways, worse in others. He'll have a great week at school, and then, for no explainable reason, will deteriorate in the pinching and biting his teachers and aides, being unable to sit still and erupting into a fury of spitting. So this is where I stand in December of 2007. I'm reading a book right now. It's called "Let Me Hear Your Voice", by Catherine Maurice. Wow. It's very inspiring. I feel like that I'm at the point where either I keep fighting autism with everything I have at my disposal, or I make the decision to decide to cope with it and put in place measures for simply dealing with Ben while doing my best to help the rest of the family adjust. I'm sorry, but I'm not ready for the second option. As for the first option, I feel that in the past I've relied too heavily on the remote hope that I might find "THE" supplement that will calm him down, make him attend, recover him from this nightmare. Frankly, I'm quite confident that this is not going to happen. Ben has not been a huge responder to anything. Ben is ALWAYS going to have issues. My goal right now is to push through as much as I can and simply force him to comply. Catherine Maurice simply says she decided not to tolerate any autistic behavior from her two year old. Of course, Ben is six, so he's had lots of time to practice his autistic behavior to get it good and ingrained in his brain. It could be that his brain can't really be changed at this point. But I'm going to make my best effort. Right now I'm so fired up about it, I can't tolerate any opposing views. Ben is not allowed to walk away from me when he's at home. He will stay with me while I do laundry, clean the house, so that he has no opportunity to stim or spit. I am trying to incorporate ABA like teaching into playtime, everywhere. Perhaps if I had done this at two and a half we wouldn't be in this boat.

2 comments:

Chuck said...

Kristin -

I stumbled onto your blog trying to find some potty training help for my 6 year old nephew. It gave me great comfort to read your posts and know that my sister isn't alone in her struggle with this. I feel that too many stories on the news end with Jenny McCarthy-esque miracles... it has been nearly 4 years since he was diagnosed and we are just now really coming to grips with the reality that there is no silver bullet to "fix" this.

Ben sounds very much like my nephew - I was wondering if you managed to potty train him and if so how?

Best wishes for Ben and your entire family -

Kristin said...

Thank you so much for your nice comment! No, I haven't managed to potty train him yet, but that is coming very soon. I think the only way to do it is to put him in underwear and keep taking him to the potty- I'm afraid I'm just going to have to bite the bullet. I'll post how it goes.

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I'm a writer, calligrapher, bookseller, wife and mother to three teenagers.