Sunday, April 30, 2006

Find the Cost of Freedom...

After reading Gettingthetruthout.org, it woke up the part of me that has always fought for the underdog. My father was a very big, strong man who, after working 14-16 hour days sometimes let the stress of work get to him. My mom understood, but I never did as a kid. When he would start yelling, I'd get in his face. I was fearless. But he was picking on "my mama"!

Now, as an adult, I understand that no one can bottle up everything...The more stress we are under at work, the more it "leaks" out into our personal lives.

But standing up to that giant of a man gave me courage. And the fact that the giant of a man didn't knock me on my butt is something that gives me more respect for him.
Neither of my parents were from the "I'll beat it out of you" school, thank God!

So here I am with all this underdog courage. Man-a-live...I know of NO ONE more beaten down than members of society who have little or no voice in the direction of their daily lives.

So I am just looking into the possibility of "room and boarding" a few people with autism. Mostly, I am thinking of a middle-aged man who used to go to the YMCA where he and I took water-exercises along with a neighbor of mine who had broken her hip. He used to confide in me, which astounded the old ladies who couldn't get anything out of him.

We'd have to move out of our 2 bedroom apartment, of course.

There is a governmental program, that, because of the Olmstead decision...Looks to end institutionalization of the handicapped. From least to most restrictive,a sliding scale is given to the caregiver who whose business is anywhere from 1 to 8 individuals...Whose needs are mild to moderate in scope. These "businesspeople" are remunerated from $27,000 to $83,000 a year, PER PERSON. I imagine at the higher scale there are many more medical needs and a larger amount of "consumers" in a facility that is still deemed least restrictive. And it isn't just room, board, and food; there are other responsibilities involved.

Of course, the governmental programs for the handicapped have their noses deeply involved in the control of the daily lives of these people,even though it is considered "person-centered". I suppose as long as the person wants everything the government wants to "give" them..........

The red tape is ridiculous, and after copying about 200 pages of rules, regulations, etc., etc.... I came across what amounted to a line or a paragraph, I really don't remember. And it said that a "consumer" only wanting room/board, that is, a "consumer" who wanted total control over their own life would have to come up with the money solely from their Social Security check.

You can bet your bottom dollar there aren't too many people rushing out there to arrange a business that is talking only a couple hundred dollars a month.

It's like a catch-22.

We give you money, we control your lives. Big Brother will take care of you, whether you like it or not. Lots and lots of cash for your care-givers.

But if you want the freedom to choose your own life...

Thursday, April 27, 2006

Why are disabled people referred to as consumers?

Is it meant to be a "dis?" As in, "not contributers?"

They consume the services offered by the government...but who thought up that bright idea? Should we call the people who make money off of the consumers "opportunists" ?
They wouldn't have a job were it not for the "consumers", so why don't we call "consumers" CA$H COW$ as that is what they are. I bet twice as much is spent in developing bureacratic conundrums as in actual services.

Another conundrum, that...

Person centered, my ass.

Just something to think about.

Dang it, I've got work to do...making cookies, brownies, and muffins for 300 kids and their folks on Saturday.

Still, I am drawn to working it out in my mind.

What if EVERY CONSUMER REVOLTED? Said, "I'D PREFER YOU REFER TO ME AS MR. PAYCHECK FROM NOW ON...".

OH, MY GOD...WHAT IF THEY ALL REFUSED TO GO TO THE SHELTERED WORKSHOPS FOR A WEEK AND ALL THE "HELPERS" HAD TO STAY HOME AND NOT GET PAID??

Consumers, my ass.

Man, I'm in a bad mood...

Sunday, April 23, 2006

Thursday, April 20, 2006

The Thought Gremlins...

My house is a mess. I am barely keeping up with washing and cooking. Forget about cleaning...

And then there they are again.

The thought Gremlins.

"GET IT DOWN BEFORE YOU FORGET!" They nag me constantly, without pity.

I have to come up with a better name than NEW THOUGHT, the beginning of my new "link to" list on the left. The WISE ONES changed my head, but the NEW THOUGHT people changed my heart.

VISIONARIES...

Maybe BRAVE NEW WORLD..."Oh, brave new world that has such people in it!" Shakespeare, from The Tempest and Brave New World by Aldous Huxley, where I first heard the expression.

We certainly are at a time of Paradise Engineering...read "Soft Eugenics". Even those simple ones like me who used to pound at heaven's door to heal our children when all along we knew that it was us who needed healing.

As one deaf person put it when asked what it would be like to be in heaven where he could supposedly hear, he said, "In heaven, God signs." I will try to give credit to the author.

Anyhow, back to the thought gremlins, this is important to me to get out here...

When I was young, I remember hearing about those evil Nazi's and saying a prayer to God that I would never be so ignorant to allow myself to be capable of such inhumanity as the Germans were. I kind of lived in fear that I would be fooled into thinking killing was the right thing to do. These were common, christian people. What caused them to become such brutal beasts?

It occurs it was the way they saw others...which led to their barbarism. It is no different today...

Just now, the words come to me..."less than human".


UPDATE: credit where credit is due, thanks to ballastexistenz:

ballastexistenz said...
The full quote is:

On the internet I heard a story about a young girl who attended her local church. She sat right up front so she could see the signer who was there every week to interpret just for her. One week after church an elderly woman from the church stopped to speak to her. The interpreter quickl interpreted the woman's words, "Don't worry dear, one day you will be in heaven and you will be able to hear as well as the rest of us."

The child quickly responded, her signs flying through the air, the interpreter spoke the words to the old woman...

"If it's heaven -- God will sign."

Amen, Sister!!

It's in the introduction to A Little Behind: Articles for challenge, change, and catching up by Dave Hingsburger. I don't know where on the Internet he heard it, but that's at least where I got the story was from that book.

Autism--Worst Welfare Disaster in History

A group of South Carolina lawmakers are trying to pass a bill that would require private insurers to cover services for all autism patients regardless of age. Industry lobbyist, Larry Marchant says that if passed, the bill would cause the health insurance premiums that individuals or families pay to increase 25%, and would average out to an extra $200 a month for those enrolled in family plans, according to State.com on March 26, 2006.





In addition, the financial burden that a disorder like autism takes on families is absolutely devastating. Upon becoming autistic after receiving vaccines at 16 months, Laura Bono says her son, "Jackson's medical and therapy needs began taking every bit of money we had saved or ever would have saved."

"The total we have paid for Jackson's medical, nutritional and private therapy expenses so far," Laura says, "is roughly $685,000 since August 1990."

That amount averages out to well over $50,000 a year.

There is no escaping the fact that the epidemic is having a profound impact on society; not only on autistic children and their families, but on our public health care programs and school systems as well. And, until vaccine-makers are held accountable, taxpayers will continue to carry the full burden.



I wish I had $50,000 a year to give to Ben for his "therapy". I think it would have something to do with living on a tropical island.

Oh, wait...That would be MY therapy!

These are the parents I "shocked" when I sent them to "gettingthetruthout.org". I'm not kidding. I am from the city in America where this is going on. And I belong(ed) to a group that is instrumental in seeing it come to fruition, the $100,000 a year therapy PER CHILD that they want to see legislated to be covered by insurance. Mr. Lovaas is wetting his pants over this, I'm sure.

Hell, they could have saved $50,000 a year if they would have read the blog. (Once autistic, always autistic. Get used to it...)

One thing about Ben's therapy...If it interfered with our ability to pay, he didn't get it. And when we moved to South Carolina, if it interfered with the family budget say, with funds earmarked for going to the beach...He didn't get it. If it meant skipping McDonald's...He didn't get it.

There is such a thing as desperation. And I think the people who try to "help" are not necessarily of questionable ethics, everybody has to make a living doing something . Some people need to feel like a Savior, in a sad sort of way.
And if they can get people to believe in their "religion" of gluten/casein free diets, mega-vitamins, dolphin therapy, chelation, ABA : who is to say it's wrong?

My Dad was a bartender. Some people feel he had questionable ethics, but he had to feed 10 kids and send those who wanted it to college. And it wasn't like he "forced" anyone to drink...He was just there to take advantage of a human propensity to share convivial wit while under the influence of alcohol. He put up with a lot o'crap, too. He never tried to be more than he was...

But when we use our desperation to enact a tremendous cost to others...

Well, this post may or may not make sense to any of you. But I am not going to delete it this time so I don't hurt the tender feelings of parent's who are putting their kids through hell to try to make them the children of their dreams. I feel for you because I wasted a few years, and a few bucks trying to do it.

Most of what I did, I did myself for free. And lately, I don't do a damn thing. And guess what? The guilt is gone!!!

I want to quote the last paragraph of the expanded edition of Thinking in Pictures: My Life With Autism by Temple Grandin.

She tells it directly as I see it.

I would like to conclude this list of sources with a warning. There is no magic cure for autism and parents must be cautious to avoid being misled by extravagant claims by people who are promoting their brand of therapy. Treatments that are effective should work with reasonable amounts of effort treatment program that works for one child may be useless for another. Treatments and educational programs that are effective can be implemented without spending huge sums of money. Dedicated parents and good teachers have made their own effective programs after reading different books. They did not have to have expensive training. A parent should follow his or her own good instincts. Try different programs or methods and keep the things that work and eliminate the things that do not work. Combining several different approaches is often effective.
(emphasis mine)

Having autism doesn't seem to preclude one from having common sense.

Friday, April 14, 2006

Labelling

Do you see my intro to this blog? Do you see all the labels? ADHD,ADHD-NOS,ADD, Autism, PDD, PDD-NOS, LD, SID, Aspergers, Dyslexic, Dysgraphic, Dyscalculaic,...I know I'm forgetting some; but they all say the same thing...

THERE IS SOMETHING SERIOUSLY WRONG WITH YOU!!!!!!!!!!!!

Kids internalize this. If we don't think they do, we're crazy. They also internalize our feelings about them, whether they are spoken or unspoken. While we are working through our "grief" at having a less than perfect child, they are trying to rise above the feeling that they are defective and maybe not worthy of our love. (Parenting isn't for cowards, and depression seems so selfish)!)

I KNOW I put Ben through that. I'm just trying to wake you up, before you do that to you child. Please learn from my mistakes.

And honey, I didn't buy that "cure" crap as much as many. My first blog was crying out to whoever would listen about what I figured the fact was that there wasn't an E.R. doctor alive who hadn't been labelled as "hyperactive" as a kid.

Who else could do that kind of work?

And Autistic traits...who could have invented the computer and the internet but obsessive thinkers? Ben's first "developmental" class had a kid whose uncle was an honest to God "Rocket Scientist"!

I didn't think they were real!

Guess who answered? Thom Hartmann. The guy started a school in New England for kids who had been abused, and the Hunter School, for kids who learn outside the lines. Most importantly, HE HAD AN AUDIENCE with POPE JOHN PAUL II !!(Hear that Mom?)

He came up with the idea that "ADHD" kids are Hunters in a Farmer's world, which was one of the first things we heard from the only neurologist Ben saw.

And he "spoke" online to me!!

And he agreed that the labels we have been giving our kids, could indeed do more harm than good. Even though I had a 5 year old who couldn't carry on a conversation, it wasn't necessarily a disability!

Anyhow, this story has more to it than name-dropping.

I just found out recently, in about the 3rd or 4th book I've read by Hartmann, that he considers himself ADHD, too. I thought he was just being nice because his son was labelled ADHD. He is such an accomplished man...

I don't know how I got to Thom Hartmann when the main thing I wanted to do today is to direct you to the blog link reached by clicking on the underlined title bar up above...Labelling.

I could read this essay daily, and not tire of it.

For those of us who have kids in the mild spectrum, it is life-affirming to realize that many have escaped the snares of Psychiatry by going underground. When the Good Lord told me that the really smart ones start off with more in common with the really slow ones than those average ones in the middle, He wasn't kidding.

And as I open up my eyes I can see that even among those considered "mentally-retarded" and autistic in the past, supposedly 75%...IF they are taught to their needs rather than to the needs of an unforgiving system...IF, a BIG IF, less than 15%would be considered retarded.

I find that unfathomable...incomprehensible...how can we as a society continue to get it so wrong? In our mad dash to capture "the good life", which it seems is never good enough, we have given up on "the rich life", which has nothing to do with money.

Some of us think the answer is to give our children everything we can afford in a mad hope to make them what we want. If those kids ever had a chance, if nothing changes, they've lost it. No one can live under the scrutiny of a lense. It burns the soul right out.

The greatest gifts we can give our children are those of the Spirit. They can't be bought, they MUST come from the heart, which is the source of true wealth. I'm not kidding...once you get access to it's treasures, all the rest is just minutiae. Life comes into focus.

But they come at an extraordinary cost. Let's, just for funs sake, see how many of these gifts are afforded to the "gold standard" treatment of behavioral intervention conceived by I. Lovaas.

Love.
Joy.
Peace.
Patience.
Kindness.
Goodness.
Gentleness.
Self-control.

Hmm...Mr. Lovaas doesn't seem to have any gifts of the Spirit, but I bet he has a lot of money, beings as his name is equated with ABA, the $100,000 a year therapy parents of autistic kids are attempting to sue somebody for. He isn't really rich now, is he? No-o-o-o-o...that's right, he's a JERK!

What about the Underground Aspergerian. He/she finds a way to give their children what they need, in small, private schools or homeschooling, like their parents did for them. They actually HIDE their children from people like I. Lovaas. Do they have the fruits of the Spirit? Probably. I'd be willing to bet my life on it.

You know, I should apologize to anyone who reads this blog. I don't mean to be condescending...but I wish someone had talked to me like this when Ben was young.

Thursday, April 06, 2006

Stages of Grief


I'm awaiting permission from the Elizabeth Kubler-Ross foundation to link to her "selected quotes" page.

We've all heard of her stages of grief: denial, anger, bargaining, depression, acceptance.

In my estimation, it wasn't her best work. I always had a hard time determining the difference, EXCEPT for acceptance. That one is precise...

But her quotes page, accessable from this link, is phenominal. And quite biblical, actually.

http://www.elisabethkublerross.com/

If allowed, it would probably be the best words written here, and the most persuasive regarding "accepting" and not "curing" our children. Maybe I'll swing a prayer up to Saint Jude...

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