Autism Watch: 2007

Posts Tagged ‘insurance

It’s been a week since I wrote about my discouragement with promotion of Autism Awareness Month. I wish I could say I felt a ton better about it, but I am afraid that the momentum will slow as we get further into April.

I did find a few interesting things on autism to share:

What Do You Know About Autism?  (Seattle Post Intelligence) A quiz for those unaffected by autism, short but sweet.

Family of Autistic Boy Battle Over Service Animal  (The Pittsburgh Channel)

This is a school that ought to be ashamed of itself. ADA, anyone?  

Tulsa World: House committee rejects bill to provide health coverage for autistic children   Do you ever wonder about people? Why money is more important than caring for autism? Why isn’t this discrimination?

That’s it for now – my little one’s been raging since yesterday morning, and is upstairs sobbing hysterically now, in his bed, his ‘cave,’ his safe place. Not sure yet what’s got him so out of sorts but we’re working on figuring it out. Just getting him home from school took 15 minutes, while he found his backpack, then his headphones, and we avoided the crying at school at least. Now? Who knows, but we’ll see.

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Julie’s Health Club: Where Alternative and Mainstream Health Meet  (Chicago Tribune)  Great recovery stories, or just encouragement and information about biomedical treatment.

 Autism: The Musical (NYTimes)   A must-see! (And a must-read.)

Arizona OKs Insurance Mandate for Autism Coverage  (Insurancejournal.com) Why can’t every state head in this direction? Oh, yeah, right, duh..it costs money!

Workshops to inform police and safety officers about autism risk management (newsinfo.iu.edu) Now if only every county/state required this of their first responders.

…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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