Autism Watch: 2007

When behavioral therapy just isn’t enough…

Posted on: January 29, 2008

…what do you do?

To say the last couple of weeks have been eventful is an understatement. I just wish it was good events. Don’t get me wrong — there’s been a lot of good things that have happened, a lot of fun, but a lot is overshadowed by the difficulties we’ve faced with ds.

Bottom line, the little guy’s meltdowns are worsening. Supplements are being refused, and being casein-free hasn’t made a stitch of difference. We’ll keep on with it, but it sure isn’t encouraging that after almost a month without milk/dairy and we’re not seeing the change so many told us we’d see. We went into this knowing that we may not be one of the 46% or so that see dramatic improvement, but we did still hope. Being GF didn’t do it either. Supplements were doing it, but he’s refusing them anymore, so of course, the refusal is causing some regression. Makes sense, but I really hoped that the improvements would make taking the supplements that much easier. No such luck.

I’m still entirely behind the biomedical theories. I believe they work, just not for everyone…just like not everyone that gets a vaccine gets autism. Some people are just pre-disposed genetically to either get better, or to get autism. And maybe at some point they will again work for my son, but for that to happen, he has to take the supplements. Maybe then he wouldn’t swing at me, and maybe he wouldn’t get mad at just about everything.

Such a sweet, smart, and loving little boy. So adorable, good-looking, beautiful eyes, long hair, and funny demeanor…when he’s not blowing up because he doesn’t want to get dressed, stop playing Wii, put away a toy…

Meanwhile, therapies that may help are too costly to afford, unavailable in your area, not covered by insurance, or don’t work. Research is being done, but that will mainly help future generations of kids. What about our children today?

Don’t mind me…tiring, not so good day…a sock in the face this morning put me in a mood. Ds comes home from school in an hour, I’m hoping it’s been a better day for him. Autism program tonight, good timing. It’s almost hard to write about it, to sound negative, to share a not so cheery moment, but a day in the life of a parent of an autistic child is, well, not always so cheery. Maybe if more of us were honest and shared, the world would realize exactly how important finding a cure and funding treatment really is. And that if you’re a parent of a newly diagnosed child, you’re not alone.

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2 Responses to "When behavioral therapy just isn’t enough…"

There are hard days, I know. All we can do is ride the storm, cling fast, and hope.

I have a thirteen-year-old boy with severe autism. When he smiles, he lights up the whole room. For many years, though, we were in constant siege mode. Nothing helped completely- not the diet, not the supplements, not ABA, not all sorts of therapies. During those years, when things were bleak, we looked everywhere for answers and found none. The truth is, sometimes, there are no answers. But if we love and believe and trust, then things do get better. Hang in there.

I send you light from across the world, with prayers for better days ahead. Blessings to you always!

I see strange behaviour with weather changes, too. Routine changes, broken expectations…. any of those things can cause meltdowns, and it can be hell.

Hugs to you. It is nothing but a roller coaster on the best of days.

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