January 2009

Teaching the Doctor

by Mary on January 29, 2009

I had another check-up the other day – another one of those where I go in, do the normal “pee in a cup” thing, they weigh me and gasp that I still haven’t gained weight, then I wait forever for the doctor to come in and check the heartbeat before I leave. Wooh…

However, everything was on schedule, and they didn’t gasp at the lack of weight gain (I may even be down a little more), and I seriously had just opened my book when the doctor came bouncing in. She checked the Bean’s heart rate, measured my belly (which is freaking hilarious because it’s not like it’s anywhere near normal… measuring the belly only works if the belly wasn’t pregnant looking to begin with!), and then sat and talked to me. About the J-man!

We talked about that he was a big baby (9 lb 4 oz), but that no, I hadn’t had Gestational Diabetes before. I also told her that the Bean is measuring more of a normal size so far.

Then, we talked about autism. She was very interested in what we are going in terms of school/therapy, and how the J-man “measures” on the spectrum, so we talked about his class a little, which seems to be a pretty good representation of the fact that there IS a spectrum in the first place. Every one of those kids has his own strengths, and his own weaknesses. Every one does something that the other parents think “Man, I wish my kid did that!” We talked about the fun “additions” that ASD seems to have in some kids – sensory issues, apraxia of speech – and I don’t think she really knew about those things. We talked about oral/manual sensitivity, and how it can relate to eating issues. We talked about “behavior issues” and how much of the time, that’s the child’s only way of communicating that something is overstressed in his environment. The J-man’s whole class is boys, so I wasn’t leaving out the girls – although there are some in the higher grades at his school, I don’t know them!

The whole time I was sitting there thinking: I know more than this person. It’s not her area of expertise by far (hello, I wouldn’t want to be an OB-GYN!), BUT I knew a lot more than she did. It reminded me that sometimes, we as parents, know more than experts.

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Today the U.S. House of Representatives passed HR 1, The American Recovery and Reinvestment Act of 2009 – otherwise known as the Stimulus Package – by a vote of 244-188. Unless I completely missed something, all the disabilities-related provisions survived and were passed along with everything else. Yay!

Among other funding provisions in the legislation, some highlights are:

  • $13 billion (with a ‘b’!) for the IDEA State Grant Program
  • $600 million for Early Intervention
  • $300 million for teachers in general
  • $20 billion for school renovations and modernization
  • $500 million for state grants for construction and rehab of facilities that help persons with disabilities prepare for gainful employment
  • $200 million to assist people with disabilities to live in their communities
  • $2.1 billion for Head Start
  • $2 billion for Child Care Development Block Grants
  • Billions for Medicaid, which is getting crushed under the weight of everyone now unemployed – including parents of special needs kids who have lost their jobs and have had to fall back on Medicaid to have any chance of affording their children’s treatments and therapies.
  • Extension of unemployment benefits up to 33 weeks

and much more.

I am under no illusion that any of this is free money. However, people need to differentiate between government spending that invests in people, jobs, resuscitating the economy, and other things that bring a big return for each dollar spent vs. government spending that is like flushing money down the drain, like millions spent on research studies that conclude that oxygen really is good for America’s cows.

I don’t know everything that’s in this legislation, but I do know that the above provisions and many others are about investing in our children’s future – regardless of their abilities – and helping people who struggle to develop the skills needed for gainful employment realize that dream.

End of soapbox. Now go start writing your Senators. I put some tips in my previous action alert.

So far, the above provisions are largely – if not entirely – intact in the Senate version. However, things can change, and this is by no means an easy road for this legislation. Write your Senators even if you think they’ll certainly vote for it or against it. They need to hear our voices!

Thanks for your efforts so far. Keep up the good work!

If anyone has additional information, please post it in the comments.

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[Update – House passes it 244-188! Now go write your Senators!]

OK, people. If you haven’t contacted your Representative in Congress, it’s time to move! The U.S. House of Representatives will debate HR 1, The American Recovery and Reinvestment Act of 2009 – otherwise known as the Stimulus Package – TOMORROW (Wednesday, January 28th in case you actually read this tomorrow). You still have time to contact your Representative!

If you missed my previous action alert, start by reading the Justice for All blog for more information about funding provisions in this legislation for services related to the Individuals with Disabilities Education Act (the IDEA we know and love), Early Intervention, and myriad other services for children and adults with disabilities.

Folks, this is our best – and maybe only – chance to save these services from being slashed and crippled by the budget nightmares affecting our local and state governments. These contacts to Congress may be the most important messages you write this year.

If you’re in a hurry, you can head over to The Arc for a ready-made letter you can send to your Congresspeople. However, if you can carve out 15-20 minutes, I think personally written messages are more effective. Feel free to use The Arc’s letter as a model, but tell a little about your story and ask for their support in your own words. One personal message can often be as effective as dozens of form letters.

Remember, be direct, to the point, and respectful, and tell them why this is important to you. Ask them to both support this legislation and ensure that the funding for these services that are critical to our children’s future remain part of it.

Find your Representative and your Senators and contact them! Most of them have easy-to-fill-out web forms to submit your message. Note – newly-elected members of Congress may have e-mail addresses rather than forms, but their page will tell you.

The Senate will begin debate on this legislation some time after it moves through the House, and it looks like tougher sledding in the Senate. So it’s important to contact your Senators very soon!

You already know this, but we are our children’s best advocates. It’s up to us. Start writing!


Another Quote of the Day

by Tim on January 25, 2009

If any special needs and disabilities advocates are looking for a motto, here’s a good one.

“Blessed are they who see beautiful things in humble places where other people see nothing.” – Camille Pissarro

Speaking of advocating, go read this action alert and get to it!


Godspeed, Kay Yow

by Tim on January 24, 2009

College basketball lost one of its greatest legends this morning. Kay Yow, coach of my alma mater’s – North Carolina State – women’s basketball team, died this morning after battling breast cancer for over 20 years.

She taught not just people with cancer but all of us how to live with determination, perseverance, hope, and love of life regardless of the obstacles no matter how difficult they might be. She coached while undergoing chemo; she coached despite being so weak that her assistant coach had to help her stand up during games, and she did so without complaint. No matter what happened to her, she continued to teach and inspire and help others find the strength to battle cancer or to battle any challenge in their lives.

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Living It

by Mary on January 23, 2009

We met up with other parents last night at the J-man’s school. The AU teachers at his school hold get-togethers for us on the same nights as the rest of the school has something parent-related.

You know, it’s good to talk to people who KNOW what we’re dealing with. They don’t feel sorry for us; they don’t blame us; they understand. It’s hard to get that from parents of “normal” kids. We talked about serious things – and we talked about funny things. There was a LOT of laughter, especially with Tim being the only man in the room, as there was a reference to “snipping it off” which sent us into hysterics, but made Tim lock his knees together.

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Action Alert! Stimulus Package and Disabilities Funding

January 20, 2009

[Update 1/27/09 – It’s crunch time! Go read this update!] While I was feeling a little wait-and-see earlier today about what we’d be able to accomplish legislatively for autism, special education, and disabilities in general in this economic climate, I just discovered there’s plenty of hope to go around! But we must act now! The […]

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President Obama and Autism

January 20, 2009

Critical Update! Go read my action alert about the Stimulus Package before Congress! At precisely Noon today, the White House web site officially switched over to the Barack Obama Administration. It’s important that we keep track of policies that directly affect us as parents of autistic children and stay committed to our efforts to advocate […]

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