Wednesday, February 14, 2007

2 out of 560,000

560,000 is a really big number.
That's how many children in the US that have been diagnosed as having some form of Autism
That averages out to 1 out of ever 150 children. That's a lot of kids.
And that's just the one who have already been diagnosed. I can't even imagine how many others are not diagnosed. How many parents who are where we were with children who has issues but no explanation of what those issues actually were.
How many parents who knew something was not quite right but were in denial or afraid of a diagnosis.

The number could skyrocket in the next few years. And what is our society going to do about this influx of Autism spectrum children? What will insurance do? What will the educational system do?

If my past week was any indicator...the answer is ...ignore it.

The boys have been out of OT for two weeks now due to an insurance snafu. They denied them without even reading the request for service. They admit it was a mistake but I'll "just have to appeal the decisions in order to rectify the situation." That translates to at least two more weeks without therapy.

At the Asperger Conference last week...which ran from 9 am to 4 pm...most of the educators left after our 2pm break and the rest left between 2:30 and 3:15 while the speaker was covering the information that they really needed to hear the most.
And the school feels that they can educate my child better than I can.
Shoot...I know more about educating children with Asperger's, speech disorders, Sensory Integration Disorder, and motor planning issues than anybody at the school that my children should be enrolled.
Yeah, right...turn my kid over to the people who were rude enough to walk out on a speaker because their "work day" was over.

For me the issue is finding out how to treat and teach my kids. I have no doubts that someday my sons will be productive citizens. I just have to find the way to get there. I'm self-centered on this topic. I don't care about what causes this because that box has already been opened for for our family. Finding out what caused it, won't make it go away. In my heart and mind, I think it's more of genetic issue than a environmental one. (Deep in my heart, I wonder what the rate of Autism in Desert Storm Veterans is since we have a few other "birth defects" that are unheard of in our family history.)

But I am still working on my quest to make people more aware. Remember when we did the radio-thon for our children's hospital?
Well, the coordinator called and asked if they could feature us on the TV version. They chose 4 to 5 families to feature and this year they want to spotlight Asperger's and Sensory Integration Disorder. They plan to film both boys at therapy and playing baseball and to interview me and the boys' therapists and doctors.
The idea is to get the word out that these children can make incredible progress if you just start therapy...and start it as early as possible.
So maybe I am focused on more than just my own kids. I'm worried for the ones who haven't been counted yet.

More of this in the future. It's a topic so close and painful for me that I can't think about it for long. Weepy mom are not the best advocates for their kids.

3 comments:

Job said...

WOW. that's an awful lot of kids. holy mackerel. you are a great mom and a great advocate! why, may I ask, do they think so many cases are surfacing at this point in time?

Dy said...

I love that you are passionate about your children. It's hard not to get weepy about the things that have so much impact on the future, our future, our children's future.
{{hugs}}
Dy

mere said...

Hi Sheila, I found you through Dy. I have a child with Childhood Apraxia of Speech (tentative diagnosis), which we caught very early thankfully, but the therapy he's been in for the past year in a half, seems to be making very slow progress. I am afraid that there might be other issues, but because he's three and a half, a diagnosis is hard to pin down. I would love to see you post about what a day in your home looks like with your boys...the nuts of and bolts of homeschooling these special little boys.

Thanks and God Bless,

mere