This morning, it just hurts.

Image by seiuhealthcare775nw via FlickrSo much was easy when I was young, even medical care, and I was thoroughly unaware. I get it now though. Especially, dealing with my teeth.

This morning I woke up with a swollen mouth. It's a tooth I tried to have pulled at a low-cost clinic a while back. For 45 minutes and forty dollars, they pulled, only to tell me in the end that I'd need an oral surgeon.  That means it stays, and I wait. But, for what?

For our family, it's become a waiting game. How long till the insurance? Just a few more hours and we qualify. We just have to make it a month or six. The jobs just have to be there, and they haven't been steady as any ironworker will tell you.   If you read my blog, then you know we have an autistic child.

Some of the political rhetoric has been pretty strong; war on the middle class, the plan is to die sooner, and on and on. They are strong words, but I get what those words mean at this moment. We did what we were supposed to over the years. We worked, and then one day, insurance was hard to get. It just wasn't there. We even did a tour in Iraq or two, to get it temporarily. We live in a city where I could walk to a dentist without breaking a sweat on a July day. If I could afford one. Even on insurance, I can't afford it, since most is fifty percent coverage. For me, that left $8000.00 on the bill. We can't. We just can't. When things get this bad, you feel like it's a war. It's as desperate as battle, and sometimes, like now, it feels like life and death. It is life and death. A tooth can kill you eventually.

I could write about how it's fiscally damaging to not provide health care for those on the poor end of the spectrum who are important to the workforce. I could tell you all about how when I am gone, when my husband is gone, we don't know where D will end up. I could wax eloquent on the subject of biblical truth and the qualities of mercy not being strained, but not this morning. Because this morning, it just hurts.

And I wish it would stop. It hurts that something as stupid as an infected tooth could kill me living in America, that living in these modern times nothing has really changed. I feel like a failure, and my jaw is sore. I'm tired and in pain. This probably just sounds like angst to your average boot-straps kinda guy, but life can't get more discouraging than this. Just. . . if you have it, be thankful for it.

Tax Dollars Circle Drain- More at Eleven

The Governor has done it again. He has found more ways to piss away the tax payers money. Fiscal responsibility never looked so frivolous as it does in the lawsuit against health care. The constitutional precedent is there and the attorney general, Greg Zoeller, chooses to ignore that precedent in the name of politics.

According to eyewitness news, Indiana joined thirteen foolhardy states in an expensive attempt to overturn legislation they don't like. "I believe that it's in the best interest of all and that includes those people who support the new legislation that we raise the constitutional questions that are apparent to the United States Supreme Court," said Zoeller; this, from coverage of the event. It is in all our best interests to engage the state's funds in a legal battle that will not be won. OOOkay. Is there any other response, but to shake our heads in wonder and amazement?

Meanwhile back on the farm, Indiana schools had an average shortfall of 3 million per district. That was the average. Job after job has gone on the chopping block in area schools. Industry is moving out of our state, and the governor issues marching orders to engage in frivolous spending. Indiana is no longer the republican bastion it once was, and this lack of fiscal common sense seems poorly judged for our man, Mitch.

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Waiting On The World To Change

Cover of Gone in 60 Seconds

You'd have to have lived under a rock to miss the song by John Mayer Waiting on the World to Change. Yesterday, the boys and I took our regularly scheduled trip to Riley Children's Hospital. It's always an experience.

Medical care is quickly becoming my "Eleanor". Gone in Sixty Seconds supplied that reference. It was the car he couldn't ever manage to steal, the white unicorn. We're wondering how the heck we'll pay Riley, a hospital that's been so good to us, and we're wondering why it feels like stealing.  Something seems wrong when caring for the sick becomes a commodity.

Of course, doctors and nurses need a living wage. Hospitals have to pay for themselves, I understand, but that's not the system we have. Providers pull in massive profits. Having a child with Autism, you want the Corvette health care. Most families in our situation settle for the Impala or nothing at all. When your child needs medications, you take them to the doctor whether you can pay or not. You have to. It's debt or seizures. That's the choice. It's a choice that hurts.

Listening to the song that is the title of this article yesterday, I had to wonder if it's really the world or only us, Americans, who live this way. Maybe it's different elsewhere, and it only feels like the world to me.  Our son won't live on his own most likely, and having no  insurance now threatens everything. Statistically, his parents are more likely to die sooner rather than later. Forty percent more likely, I'm told. Who cares for him then? So, you see, medical care really is my "Eleanor". It's something so valuable we can't buy it. It's so necessary that it's life and death. That's why it feels like stealing.

Looking at D, I wish he didn't have to depend on anyone because the world around him doesn't look like it's changing. He's always going to be in need of a commodity no one is willing to part with easily. America will always be dominated by the "boot strap" culture of the olden days. While there is much to be admired in those who can pull themselves up by their boot straps, some have no boots. What do they do? They wait. Good Samaritans rarely come along and are rarely sanctioned by our society. It's all very Darwinian. I wonder often at the espousal of this mindset by so many conservative Christians. It seems at odds with their values.

Hoping for reform of our medical system seems now like a naive notion only a child would have, like Santa or the Easter Bunny. It was improbable and unbelievable.  How could I have imagined America was ready to grow up and behave in a civilized way? It seems very foolish now.

I suppose the families trapped like ours in a world that excludes their children in many ways will go on doing what has to be done for those children. We'll keep going after "Eleanor", even if we have to steal it, because that's what parents do. Anything it takes.

Merry Christmas, Mr. President.

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Sitting here in my living room tonight, I watched the news of passage of historic healthcare legislation with a heavy heart. My son who has autism slept on the other end of the couch because today had been a bad day. How will we do this now? I thought.

You see, if we could, we'd have insurance now. The experience of Tricare was the "good old days", if you ignore the damage done by sending a father and husband off to war in order to get good insurance. Insurance companies deny us or price us out of coverage. Even reserve coverage was too high to manage with unemployment looming, so now we've gone without.

A mandate to buy insurance, I thought, looking at that obscenely bright Christmas tree in my tiny living room. If I had anything of value now, I'd sell it to get insurance, so Darrel could go back to speech therapy. If I had options, I'd go hungry to get him occupational therapy, just like I choose between good food and perscription refills now. Now, that we're to be mandated to pay the rates demanded for insurance. How will we go on? I just can't see it.

And there sits that damned Christmas tree. Oh, the things it took to make Christmas happen this year! Barely making layaway payments with my heart in my toes. Family pitching in to help with the big things. Keeping the big things to a minimum. Then this news. It's just an early present, sir.

It's not that I don't get it. Some will be helped by this plan, I'm sure. Somebody will get dental care that wouldn't have, but why do I have the suspicion that it's not my sons and daughter? Why do I have this sinking feeling that all this reform means to us is yet another bill we can't pay? All because some insurance company had the pull that the people lack, we're looking at another long year and wondering if this is the one we don't get through.

Then Leiberman says you never pressured him for a public option. That broke my hope, Sir.  A few weeks ago, I toughed out a kidney stone at home and remembered my father doing the same. He was always insured, by the way. He wanted to save the money, if he could, but our family didn't even have it. I missed work at a part-time job we couldn't afford to miss and endured pain you couldn't imagine. Do you know how many of our friends are doing the same? People who, in my father's day, would have been considered to be doing okay are reduced to home remedies and hope.

There's something fundamentally wrong with this country if nothing above this paragraph matters. It matters that someone tried to change things, I suppose. Merry Christmas!

Healthcare on Ice!

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

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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 Opensecrets.org, 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
NorPAC	$20,710

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.

Healthcare for Dummies

I'm watching the debate with a skeptical eye. Skeptical doesn't quite cover it. Cynical? Disbelieving? Disillusioned? All of them are very good words for what I'm feeling.

You see, our place in the system as a family with an autistic child is pretty much written in stone. I've seen nothing that makes me think we suddenly have a place in the hearts and minds of others in our society. Mainly, this cynicism is because over the years I've heard it all.

When our family was on medicaid, we were "suckling at the government teat". That one amused me. When we got desperate and one of us volunteered to go to Iraq with his reserve unit, I was told once, "that others shouldn't have to subsidize my son's disorder", when discussing education and whether my son deserves one. This, in spite of our sacrifices, seems to be all I hear now. The Tri-care is gone, and life returns to the financial and medical chaos we lived in before this. What will we be now? A burden? A menace? Unfortunate?

This is why I only support a public option, though a true system of government health care would be better. None of this should be debatable, and, in other countries, I don't hear the same kind of debate taking place about whether diseases and disorders should opt you out of society. Autism is expensive in those places too, but the question of what makes a citizen valuable doesn't seem to be bandied about at every town hall. The emphasis is most often on prevention and helping people live productive lives and not on their monetary value as a person. When I go before school boards and superintendents and committees, I even find myself emphasizing the fiscal crisis of Autism and my son's future life multiplied by millions, just so I can make them care, make them act in their own interest if not his.

Is that all we've come to? A dollar amount? Because of his disorders, my son's health care is rationed right this minute. He can't get coverage even if we can afford the ridiculous premiums. His value is zero, according to the ones who get to decide. Insurance companies.

Mankind has indeed done terrible things to the weakest of us over the centuries which makes the argument of "death panels" seem possible, if far-fetched. I submit that this happens regardless of who has that authority because we fear disorder and those who have them. They are uncomfortable reminders that we have weaknesses.

We're afraid of it. Recently, citizens in Indy came out against an assisted living home for kids like mine citing NIMBY- not in my back yard. School districts cut services at every opportunity for children with IEPs in this state. Insurance companies refuse anyone with seizures in their history. It's all discrimination, and it's what we're really fighting about.

We need to stop arguing about value and cost and decide what we really believe. Is there a point where we lose value? God, I hope not because we will all be old one day. Is there a concrete way to determine value? Value is subjective. My son means everything to me and nothing to someone in Washington D.C. or Houston or San Diego. Our society has to make up its mind. What do we believe? How far will we take that belief?

I'm about to make some controversial statements. Prepare yourself. First, one can NEVER be pro-life and anti-health care. It's contradictory because a "person's a person, no matter how small" cannot apply only to the newborn fetus and must also be applied to the homeless man on the corner or the emotionally disturbed child in the classroom. If it's not applied to everyone, then we've made a person have numerical value. Second, "death panels" are nothing to fear in a society that will condemn them and resist them, as I believe this one would. Children diagnosed with disability are no longer institutionalized as the first resort and forgotten. We did that, and I have every confidence we can make the same kind of changes with special education and health care as long as we find the will. Finally, everyone out there marching against health care reform is assigning that value to someone else. I'm sorry, but that's how I feel. It's not about shutting you up. It's about disagreeing with the arguments when we have so many who need our energy put into helping them, not devaluing them.

Put down the signs and start hitting the books. Because we're all headed for trouble if neurological disorders aren't checked. There's been a GLOBAL increase in epilepsy, did you know that? Did you also know that we don't really know what causes it and it can be developed at any stage of life for no apparent reason or from all kinds of apparent reasons no one really understands? Did you know one bad seizure could make any of us disabled in a heartbeat? Now, be afraid. Be very afraid, and start working on solutions, people. We're burning daylight.

Aspie's Online

Who knew there were autistics out there who love autism? It's really amazing. YouTube's The Wrong Planet is actually a study in what's wrong with autism and defines it as a disorder.

Kids with autism can't always get social cues and have difficulty empathizing. Since the broadcaster of The Wrong Planet is fine with his disorder, he doesn't understand why my son might not like his. The point is that Aspberger's/high-functioning autism is not the end of the spectrum that will destroy a child's life. On our end of the spectrum, computer broadcasting seems like a pipe dream.

My point is not to belittle the contribution of this child to the world at large. He has great talent and ability but little human understanding. That's another symptom, not a reason to rejoice. Egocentricity and autism go hand in hand.

Darrel has many strengths. Autism isn't one of them. Unlike some parents, I am not waiting for a cure, but you won't see me going to Autism the Musical anytime soon either. My son isn't NON-neuro-typical. His brain is physically hindered, and I wish to God it hadn't been because he deserved much, much more happiness in life.

Instead of marriage and children, he will grow old with me and his father. We will all work tirelessly to get rid of autism because the only thing that's changed over the last twenty years about our world is the environment. We are doing this to ourselves, and that is my heartfelt belief. There are changes to be made, and complacency isn't an option. Thank God for Autism Speaks and others like them.

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