Thursday, September 15, 2011

Autism Works: A (Phone) Call To Action

Autism Works is a post I put on all my blogs, updating you on the latest information affecting people who are autistic or who know someone who is.


I would like you to make a phone call, and to keep making that phone call until you get through. But the phone call is not for me, it's for Mr F and Mr Bunches.

If you follow me on Twitter, you've already heard the gist of this, but it bears examination and repeating. At the bottom of this post, you'll find contact information to email Eric Cantor or call him, so if you know you already want to do this, go there and get that info. If you don't know why you should want to make a simple phone call, read on:

Here is my son, Mr. F. He was four years old when this video was shot:





Mr. F currently gets therapy 20-25 hours a week, in our house. So does his brother, Mr Bunches. They each have teachers and therapists come in every morning at 8:00, and stay until 11:20, when the boys each get on separate busses to go to their 4K classes for three hours. Two days a week, Tuesdays and Thursdays, the therapists come back from 3:00-5:30 p.m. There are two to four extra people in our house for 25 hours a week. At school, each of the boys has an aide that helps him in school. Mr Bunches' is part-time. Mr F's is full-time, by his side every second he's at school. They also have speech and occupational therapy, and used to get out-of-home occupational therapy until our insurance benefits ran out for the year.

The cost of just the in-home therapy per year is $50,000 per child. That doesn't count the school support services or the busses that take the boys to school or the ankle bracelet Mr F wears in case he wanders away or the sheriff's deputy who comes to our house once a month to check that the bracelet works.

All that effort is helping the boys learn to do things like talk. Many autistic people are nonverbal.

Mr F, for example, will say maybe 10 or 15 words. He understands what you say, but has trouble talking. When he wants something, he will use sign language and gestures, tapping his chest to say "I want" and taking your hand and pointing it to where he wants things. He, this summer, began being able to say I want but he can't pronounce the words yet. He says "Bo bo," which we know means I want.

He said a sentence the other day: He said "Bo bo GO." Which meant he wanted to go for a ride. It was the first sentence he'd ever said to me... after nearly 2,000 hours of intensive therapy and work. (It's not just teachers. We do it all the time, too. As I was typing this, Mr F wanted his breakfast, which is usually cheese puffs. Autistic kids are even pickier than other kids, in part because they are so sensitive to sensory issues we barely register, so they have to work at expanding their food groups. Before Mr F was allowed his cheese puffs, as part of his education, I had to make him choose between two alternatives [forcing him to communicate], then make him get the bowl out, and then tell me "I want cheese puffs," which he said as "bo bo" and pointing. To ensure that Mr F can someday take part in society, I have to make him work for his cheese puffs.)

Now on to what you can do:

Back in 2006, Congress passed the "Combating Autism Act." That bill -- passed by a pre-Tea Party Republican Congress and signed into law by the Republican Worst President ever -- set aside $924 million over 5 years to develop a strategic plan to expand and better coordinate the nation’s support for persons with autism and their families. It led to important research being started and promising new interventions.

Autism, as you may know, affects 1 in 70 boys, and the costs of supporting autistic individuals in society are $35,000,000,000 ($35 BILLION) per year. Interventions and cures allow autistic individuals to live fuller lives, with less costly supports (if any at all.)

The Combating Autism Act was the most comprehensive health measure ever passed. And it will now expire at the end of September, 2011, unless reauthorized.

That reauthorization is pending in the "Combating Autism Reauthorization Act," or CARA. CARA is almost halfway to becoming law: The Senate committee considering it just passed it unanimously and sent it to the full Senate.

But it has not yet been put up for a House vote, because of Eric Cantor.

Eric Cantor, the House Majority Leader, co-sponsored the bill in 2006. He is one of 113 House members of the Coalition for Autism Research and Education. He has taken part in "Walk Now for Autism Speaks" events.

But he won't even let this bill go to the floor for a vote.

Eric Cantor won't let America decide if autistic children should have a shot at a fuller life.

You can email Eric Cantor very easily by going to this site and filling out the form. It's a pre-written email that takes about a minute to fill out and send, and you won't get junked or spammed.

Or you can call Eric Cantor at 202-225-4000. I've got that number programmed into my cell phone, and called it 20+ times yesterday. It was busy during working hours, and after hours I was told I could not leave a message.

But I'm going to keep trying. Because if Mr F can work his way through counting to ten, I can certainly make a phone call, and so can you.

Call or email Eric Cantor and tell him to let the Combating Autism Reauthorization Act go to the House Floor for a vote!

4 comments:

Tim Morrissey said...

I always enjoy reading your snarky posts about sports; that's what initially drew me to this site. When I first saw this post, I was tempted to simply move on - it's not about sports. But I read it, all of it, and I'm glad I did. It's great writing, from the heart, and I just wanted to say how much it touched me.

Briane P said...

Thanks, Tim. That's why I put this particular post on all my blogs -- to catch people who might not otherwise read it.

Flamingovideo.com said...

While writing a story, writer might b used to think about childhood, taking readers to back in their minds.

Daniel Jorden said...

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