Monday, March 5, 2007

Navigating the maze

One of my greatest sources of frustration and angst is trying to navigate the maze of treatment options for Gage. There are so many options, tons of behavior type programs, biomedical treatments, traditional speech and occupational therapy. Which on will work? The answer is all or none of them. I have heard autistic children likened to a snowflake; all similar but yet each one unique. So what works for one child may not for another. There is no single answer.
Finding the answers for each child reminds me of trying to find your way through a maze and you have to collect puzzle pieces along the way, some of them fit some of them don't and the pieces are not free. Oh no! Some pieces are given to you by the school system or the state or insurance but many of them come with a large fee. ABA therapy 80-140$ and hour. Biomedical treatments: first visit to DAN doctor and first round of blood tests 500-3000$, supplements that may or may not work 50-300$ a month. Those are just two examples there's also RDI, VBT, the Son Rise Program and the list goes on and on..... So which piece do you pay for? There is no guarantee that that piece will be helpful. And many pieces of the puzzle give better results when put together with other pieces. And unlike other medical issues you do not have a knowledgeable person in charge. All the research and planning and decisions are up to you. If you pay for one puzzle piece and it doesn't work you beat your self up because you could have used the money for another puzzle piece that may have worked. It's all very overwhelming.
Right now we are exploring biomedical interventions for Gage. He has been on the GF/CF diet for a month and I am trying some other supplements. Wes and I were talking the other night and we are definitely seeing some improvements in eye contact and language. But I would love to take Gage to DAN doctor to help me at least figure out the bio med aspect. We are saving our pennies. Until then I research and research....
We are also working on getting an ABA program set up for him. We may or may not be able to get help with funding from the county. I found one therapist for 75$ an hour. Not a bad price really. ABA hours can be any where from 10-40 hours a week of therapy. Now she would set up the program and help get it started but not provide all the therapy. We couldn't afford that anyway!
We keep going, winding through the maze looking for the next piece that will be a good fit. Sometimes we get tired and have to stop and take a rest, but we labor on looking for the light at the end and the big piece of cheese.

No comments: