Information for parents of disabled children

Monday, September 28, 2009

How the GOP Scares Grandma - The Daily Beast

Once the party of fiscal sanity, the Republicans are now wailing that the Democrats' health-care plan cheats seniors out of money. Matt Miller on the right's shameless gambit.

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Healthcare on Ice!

The Rideau Canal serves as a waterway in summe...Image via Wikipedia

"Spending restraint will not come easily to the Democratic Party. Pent-up demand for investment in education, health care and the environment is understandable after the Bush years. But long-term progressive government can't be built on a foundation of debt and deficits."- Sen. Evan Bayh.

We're skating into dangerous territory. This update came in my email this week. Basically, as one of those in the "rationed" segment of society, I understand one thing about the Democratic party. It has no guts.

Our medical system is a large portion of the mess we find ourselves in today. A lack of reform doesn't just leave those with Autism and disability out in the cold. It will destroy any chance we have at a stable economy. We're letting the bill before us now be changed to something that benefits no one but insurance industry lackeys. What else can I say? Oh yeah, thank you, Senator, for the heads up. When's that election again?
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Friday, September 25, 2009

We've got to M.O.V.E.

You know that intel commercial, right? Our rock stars aren't like your rock stars. I had that experience today at school. Linda Bidabe visited our site today, and I had no idea she would be there. It was awesome! My admiration for this woman is infinite.

M.O.V.E International is a program dedicated to improving the quality of life of those students with multiple disability. Great Britain has adopted this as a national curriculum. Across Europe, MOVE is widening it's reach and making a difference. What is that?

You see that equipment? Simply by getting these kids and adults up and moving, we are engaging both minds and bodies in learning, building muscles and avoiding injury, and bringing choice and freedom back into their lives. The difference I've seen in the kids I work with is nothing short of miraculous.

So today I got to see one of my rock stars. If we can make half the difference for children with Autism that Linda makes with her program, I'll be well and truly happy.

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Wednesday, September 23, 2009

I Vant To Be Alone!

Cover of "Overcoming Autism: Finding the ...Cover via Amazon

And other things that aren't going to happen.

Today was not a typical day for me. It was much, much worse. Last night, I got to take an ER excursion that I can’t pay for to determine if I had appendicitus. Good news! I have a bladder infection that could take down a small horse! So that’s all right then.

Maybe it’s because I feel like I’ve been hit by a truck, or maybe it’s because I let myself watch too much news today. Whatever the cause, I’m mad. I resent that one day not cleaning my house means two days making it right again, not that it ever gets to right and stays there. I resent being a single mother with a husband because autism can be harder to deal with “for the man”. I want to scream that it isn’t fair, even though I hate the “Why me?” crowd.

Mostly, I resent that nothing ever gets finished in my life, and no one else is ever totally satisfied with my progress. A typical day for me starts at 6 Am with the chickens. Kid no. 1 must be dressed, medicated and on the bus by 6:45, then kid no. 2 has to get up and dressed. She gets dropped off at a private kindergarten, lunch in hand, because it’s that or I can quit the “at will” job I have to stay home half days every day. Then kid no. 3 must be put on a bus. At twenty minutes after eight, I am “at liberty”, unless I work that day.

At my son’s school, I substitute and love it because I know every kid, love every kid, and I’m an expert on disability thanks to my life. It’s also the only possible job and tons of us moms work there. Day care won’t take some of our kids, you know. Too disruptive. Legal liability and all that. You understand. So we work their schedule, their very abreviated schedule.

If I’m not working, I make coffee. I drink coffee and look around to decide what fire gets put out first. After coffee, I begin the first of approximately five loads of laundry that I will do today and fold as I can. I vaccum if I’m really lucky. I shampoo floors and couches and wash walls. This must be done at every opportunity since kid no. 1 can’t help but make food messes and touch EVERYTHING. If I could be really liberal in my thinking, maybe I could see it as concept art. Alas, that’s not me.

On days when I help in advocacy for parents, I spend time online or making calls. I try and set parents up with help where they need it. Occasionally, the need arises to organize a few barely attended events for parents who know nothing about the system yet, but need desperately to learn before it eats their child’s opportunity for growth alive. I wish that was over-dramatic.

But today, I didn’t get to do any of those things. I got to curl into the fetal position, until it was time to throw up again. I resent that too. Time away from that schedule for me is crippling. It can make my life ridiculously difficult for weeks to come. Add to it that I can’t afford to get sick. I can’t afford to die. What am I saying?

In the ER, I read “Overcoming Autism” while I waited for tests, then picked up my meds to scoot home just in time to medicate the unmedicated and put everyone to bed. My husband’s idea of supervision and mine do not meet.

You know what? I am technically unemployed, and one of those drains on the system everyone else gets so wound up about, but I don’t think I’m lazy. I’m too exhausted to be lazy, still how much of a failure can I feel like?

Then there are those people who overestimate my ability to tackle the symptoms of autism, including family . My son started pulling his pants down for no real reason this last week. Yeah, you’d think there would be a very clear reason, wouldn’t you? Every now and again, I don’t know he’s done it and a “window incident” occurs. Oh, there is no greater joy than having your husband ticked off because kid no.1 was in the window again. It’s my failure to control circumstances that put him in that window, I guess.

Here’s the thing; the amount of work it took to get him here is unfathomable. Repetitive tasks at the store and at home. Constant verbal reminders to do a thing. Nights when he had such sleep disturbance he slept ON TOP of me. There was screaming and police calls because people thought we were beating him or killing him. There were choices about side effects and outcomes. You can’t imagine what that’s like, especially knowing that the difference it all makes could be great or miniscule depending on the will of God. So, I guess what I’m saying is “ Get off my back, People! I’m working over here!”

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Sunday, September 20, 2009

Must we flush !

I Think...Image by crowolf via Flickr

Things you never thought you'd say until you had a child with autism. That's my thing this week. Of course, it was preceded by "We do not RIDE the cat" and "Pants UP!"

We're flushing the toilet. No, I mean a lot. It's killing the planet one flush at a time. Referring back to the article on stim, this is one of the battles you take on, but how does one fight the lure of the flush?

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Wednesday, September 16, 2009

Dick Lugar's Horrible, Terrible, Very Bad Response.

{{Potd/-- (en)}}Image via Wikipedia

After the economic recession in our country comes to a conclusion, a high priority may be extension of health insurance coverage and reform of many health care practices. When such changes occur, they are likely to be expensive and Americans will need to debate, even then, their priority in comparison to many other national goals. One reason why health care is likely to remain expensive is that major advances in surgical procedures, prescription drugs, and other health care practices have prolonged the lives of tens of millions of Americans and improved the quality of those additional years. The Washington Post, in a front-page story on July 26, 2009, mentioned that "the fight against heart disease has been slow and incremental. It's also been extremely expensive and wildly successful." Americans should not take for granted all of the advances in health care that have enriched our lives, but we sometimes forget that we require and even pray for much more medical progress in years to come, which is likely to be expensive.

This came in a response from Sen. Lugar this week to my letter about health reform. While I see his point that Americans are extending their lives through medical advances, he is a bit off here. You see, people in this country are not extending their lives beyond other industrial nations' averages. It just isn't factual to say healthcare is expensive because we're saving lives.

According to, these are Sen. Lugar's top 5 contributors:

arnes & Thornburg$39,050

Eli Lilly & Co$34,850

Ice Miller$29,000

Cinergy Corp$24,250


Those numbers are not wholly representative as they are only individual contributions, but you get the point. Living in Indianapolis, I see the Lilly lobby machine at work. It makes government officials forget cogent facts like record-breaking profits that do NOT go back into research and development. In fact, even big pharmaceutical companies and insurance companies are recognizing that they need to get on the bus or be left at the stop, so why would the senator make the above argument?

Why would any of them? Because of campaign finance, in my opinion. Our system has a glaring, gaping hole in it. By allowing any industry subject to government regulation to give funds for campaigns, we are basically putting the fox in the hen house. Of course, our representatives should have the guts to go with their beliefs, but they obviously don't. I say this in optimism, because I hope Sen. Lugar knows these things to be false but said them anyway. You can fix corruption, but there is no known cure for stupid.

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Saturday, September 12, 2009


RISE Learning Center is hosting a seminar on September 15 at 6:00 pm. Rise is located at 5391 Shelby Ave. 46227. The seminar is Building Positive Relationships with Your School, so if you live in the area and have a special needs child feel free to join us! Childcare is provided.
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Living for the day . . .

Cotton CloudsImage by Brian Hathcock via Flickr

Life isn't as it was. Mostly, I'm okay with that, but today I called home as I usually do. Daddy's gotten up in years, and he's changed, quite a lot. We all have. That made me think long and hard about where I've been and where I'm going. It made me think about how old I feel right now, and how old I might feel when I'm eighty.

Life is exhausting for some of us, and often we just wait for the day we can return to that simplicity of childhood, those days when mama and daddy fixed everything that was wrong. Everyone figures out eventually that those days aren't coming back, except that it's now our turn to fix everything and be the hero.

I'm okay with that, until I hit something I can't fix like seizures and migraines and autism. Then it sucks big time to be a grown-up. Then I want to go back to when my biggest worry was stepping on a snake or boys.

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Sunday, September 6, 2009

Five For FightingImage by Mandy No Good via Flickr

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To Stim or not to Stim. That is the Question!

Spinning is fun. We don't have to be auties to know that much. For Darrel, it 's a way of life. The things we do. . . We spin everything. If it goes in circles, we have to try, twice. If it makes colors when we spin it, OMG!

As his parents, teachers, friends, we laugh at the habit. We try to stop the habit. Sometimes, we accept the habit, but it is one of the things that makes us different. When we go out, we're sometimes carrying things to spin. We pick the hill we mean to die on, and spinning isn't usually that hill. Speech might be. Screaming might be, but spinning? No, not this week. Probably, not next week either.

Maybe that's what I wish people knew. We're trying. Hard. However, autism kicks our butts a lot. And it depends who you talk to whether it's somehow our fault. Some people think it's just part of who he is, and we're wrong to change him. Others say we're letting too much slide. Discipline is key.

Autism, for us, is severe enough that I have to pick and choose what we're going to fight for that week, that month. We focus on speech more often than not, and behaviors that alienate him from others like aggression or screaming. However, when we get the well-meaning advice or contemptuous glares from those in our community for whom we are an inconvenience, part of me wants to grab them and shake them. Scream a little myself. Say, "What the Hell would you start with, Lady?! Huh? Just what do you think you could do in my place? Because I could use a spa day. You wanna turn?" The difference between Darrel and myself is that I don't get to say that. God, I want to, but I don't.

Most days the misunderstanding just rolls right off, but some days it's harder. Some days, I woke up thinking about all the things he won't get to do or I'm tired and he's tired. I will admit to occasionally, during the early days when things were REALLY bad, letting my tongue go in a grocery store. Sleep deprivation lowers inhibition. I can't support that statistically, but it's my educated guess.

The good news is that he's better, and it's less of an ordeal (THANK YOU JONI) to go out and do things. The really good news is that he's become pretty aware of when I'm headed for my own meltdown, and Darrel hugs appear to be the cure.

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