Wednesday, September 2, 2009

Wednesday musings

There’s been a bunch of media coverage lately, and its gearing up to be a major advocacy push on 9-9 by the National Autism Association. Please consider printing and faxing some of their materials on 9-9 to the pertinent parties. Its going to take all of us to get their attention.

I was out reading assorted links today, and happened up a presentation by Dr Bryan Jepson a few years ago that I really enjoyed reading. Go read it.

Here is the concluding section, which for me sums nicely the concept of doing biomed and ABA and advocacy at the same time:

“When we treat the kids we correct their nutritional abnormalities. We treat the gut. We support their own detoxification system. We remove the toxins from their bodies. We break the inflammatory cycle. We support their immune system. We treat for viruses. We try to heal the tissues. And we teach them. I mention education because I think there's a misperception among a lot of people even within the autism community that either you seek biomedical treatment or you do ABA therapy. It's not either/or, it's both. You must remove the barriers medically, and simultaneously you have to teach the children. They have to be caught up to the stage their peers have achieved naturally. Education and medical treatment work hand in hand.

This is the new paradigm in autism: autism is an environmental illness with a genetic component. It's a complex metabolic disease, not just a developmental disability. It involves multiple body systems that are interacting with each other. Autism is treatable. That's an important message to hear for those of you who are just starting out, but I think it's equally important for those of you who've been struggling for years and years and still have a long way to go. It's a marathon, it's not a sprint. Autism is a very complicated illness. There's still a lot we don't know, but our understanding is improving. You'll hear some parents say that their children virtually recovered after a single intervention. But for most of us, myself included, it's a long process. It may take 100 interventions, it might take 10 or 15 years, and it will drain your resources and your emotions. But the important thing is to never give up. Our children are trapped in there and we have to fight to get them back out.

The other important thing is that we must continue to fight for a cure. I said at the beginning of this talk that answers won't come from the top down, but from the bottom up. Until we raise our voices loud enough to change the thinking of those in charge, we're not going to make much progress. Until we have a government that is willing to look for the cause, we're not going to have the answers. We all need to play a role. I believe that a cure is possible and I believe that autism can be prevented, but it's going to take a lot of work from all of us”

Dominic’s doing okay. Each day is a series of ups and downs. He’s definitely more irritable lately, and either that’s sore tummy or frustration on his inability to communicate, or downright fatigue from his schedule. Its hard to know because he simply can’t tell us what hurts, or if he’s tired or hungry or bored or overstimulated or what. We continue to get good reports from Alpine, and the D11 classroom, so clearly he’s saving his irritability for home, which is hard.

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