Saturday, September 15, 2012

Where's the manual??

After J was diagnosed as being on the autistic spectrum I felt as if I was thrown into a foreign land and I didn't speak the language. As I began researching the next step I was bombarded by acronyms - ASD, PDD-NOS, ABA, PRT, DIR, ST, OT, VBA, DAN!, GFCF, and on and on. My head was swimming trying to make sense of it all. Yes, knew that J had an ASD, but what I wasn't sure of was what to do about it. Doctors did a great job of making us aware of the red flags and of getting us a diagnosis, and our service coordiator was helpful with getting J's services increased. However, no one told us what to do next. Type autism into a search engine and you will get a seemingly endless amount of results. There are pages upon pages of articles on autism - what is it, what causes it, what therapy is the best, can it be "cured", etc. Much of the information is conflicting.  It is hard to make sense of it all. Everyone seems to have the "answer", yet none of the answers are the same. All I knew was that my son needed my help, but I felt unequipped to give it to him.  I begged our sevice coordinator to point me in the right direction, but he was unable to do so. He is able to help me get the services I want, but he is not allowed to recommend one over the other. The doctor that gave J his diagnosis didn't give us any course of action either. All I wanted was for someone to say do _________ and you will see ___________ results. Don't tell me there is something "wrong" with my baby and not tell me how to "fix" it. (Don't get me wrong, I don't think there is anything WRONG, with J, nor do I want to "fix" him. I do however want to give him every opportunity to succeded and be happy in life) I frequently complained that we should have been given a manual of instructions on what to do next. A little guidance would have been greatly appreciated.
I began to immerse myself in information. I researched various therapies and ordered several books on the topic. I became frustrated when my interest would be sparked in a certain therpy, only to find that there wasn't anyone practicing it in my area. I became consumed with trying to figure out what steps to take next. Just when I thought I had made a decision I would change my mind again. I felt as if this were one of the most important decsions I would have to make, and I wanted to be sure to make the right one. What I finally came to realize is that there isn't one correct answer. Every child is unique and has his or her own set of needs. What works for one child may not work for another. It may also take a combination of things to find out what will work. It is going to be a journey filled with trial and error. I need to accept that and have faith that I am doing what is best for my boy.

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