my son is the little kid magnet

it never fails, when we are out, if little kids are around, they are on or near him.

Whats in the stimulus that scares me most

American Recovery and Reinvestment Act of 2009

The bill’s health rules will affect “every individual in the United States” (445, 454, 479). Your medical treatments will be tracked electronically by a federal system. Having electronic medical records at your fingertips, easily transferred to a hospital, is beneficial. It will help avoid duplicate tests and errors.

But the bill goes further. One new bureaucracy, the National Coordinator of Health Information Technology, will monitor treatments to make sure your doctor is doing what the federal government deems appropriate and cost effective. The goal is to reduce costs and “guide” your doctor’s decisions (442, 446). These provisions in the stimulus bill are virtually identical to what Daschle prescribed in his 2008 book, “Critical: What We Can Do About the Health-Care Crisis.” According to Daschle, doctors have to give up autonomy and “learn to operate less like solo practitioners.”

Keeping doctors informed of the newest medical findings is important, but enforcing uniformity goes too far.

New Penalties

Hospitals and doctors that are not “meaningful users” of the new system will face penalties. “Meaningful user” isn’t defined in the bill. That will be left to the HHS secretary, who will be empowered to impose “more stringent measures of meaningful use over time” (511, 518, 540-541)

What penalties will deter your doctor from going beyond the electronically delivered protocols when your condition is atypical or you need an experimental treatment? The vagueness is intentional. In his book, Daschle proposed an appointed body with vast powers to make the “tough” decisions elected politicians won’t make.

One quote from the book that is very telling:

"Daschle's solution lies in the Federal Reserve Board, which has overseen the equally complicated financial system with great success."

Commentary by Betsy McCaughey
http://www.bloomberg.com/apps/news?pid=20601039&refer=columnist_mccaughey&sid=aLzfDxfbwhzs



Critical: What We Can Do About the Health-Care Crisis by Tom Daschle
lo and behold, Senator B0 endorsed this book, saying:

The american healthcare system is in crisis,
and workable solutions have been blocked for years by deeply entrenched ideological divisions. Sen. daschle brings fresh thinkin to this problem, and his Federal Reserve for Health concept holds great promise for bridging this intellectual chasm, and, at long last, giving this nation the health car that it deserves."

Imagine the implications for those of us raising children society has already signed off on as "less-than"? When will treatments be withheld so "nature can take its course"? Will heart surgery for the mentally retarded not be "cost-effective" enough?

"Meaningful use" feels an awful lot like "Life unworthy of life", to me.

"A lack of resources caused Germany and other countries to favor those who would recover versus those who would need constant care."

Propaganda slide featuring a chart produced by the Reich Propaganda Office showing that in 1936 the total cost of caring for 880,000 people ill with hereditary disease was 1200 million Reichsmarks, which was almost double the 713 million RM spent on the administration of the national, state, and local government.

Date: 1936
Locale: Germany
Credit: USHMM, courtesy of Roland Klemig
Copyright: USHMM

In 1920, the concept of living beings not worthy of the life they embodied gained impetus with a tract published by two university professors, Karl Binding and Alfred Hoche. Permission for the Destruction of Life Unworthy of Life articulated key implications for people with disabilities. Binding and Hoche called for the killing of people with disabilities, whom they viewed as "incurable idiots" having no will or sense of living. Killing them, therefore, was hardly involuntary euthanasia, that is, the imposition of others' will upon them. This shifted the burden of human existence from simply being alive to requiring an explicit justification for living.

For Binding and Hoche, therefore, the right to live was to be earned, not assumed. One earned the right to live by being a useful economic contributor to society. Chief among the individuals they saw as being useless were those who seemed to have little or no human feeling, or in their terms, "empty human husks" whose only societal function was the consuming of precious resources while contributing nothing to society in return. In Binding and Hoche's terms, they were "useless eaters" whose "ballast lives" could be tossed overboard to better balance the economic ship of state.

Binding and Hoche's polemic was furiously debated across Germany. One strident critic of the Binding and Hoche position was Weald Meltzer, the director of an asylum in Saxony, who held that many of his charges did indeed have the ability to enjoy life inasmuch as their disabilities would allow. In an attempt to support his belief, Meltzer surveyed the parents of his patients to ascertain their perceptions of disability and euthanasia.

To Meltzer's astonishment, the survey results showed a widely held contradiction among the parents that although they had strong emotional ties to their children, they simultaneously expressed, with varying degrees of qualification, a "positive" attitude toward killing them. The results were a harbinger of future public and official perceptions and actions toward people with disabilities. Meltzer's survey was later used as a major rationale for the killing of thousands of people with disabilities under the National Socialists, whose long-held social perceptions of difference coupled with official state prejudice delineated a series of genocidal markers that doomed significant numbers of people with disabilities during the Nazi era.

Propaganda slide featuring three portraits of mentally ill patients. The caption reads, "Idiots!"

Date: Circa 1934
Locale: Germany
Credit: USHMM, courtesy of Marion Davy
Copyright: USHMM



...by the end of World War I, an implicit but palpable public perception of higher economic worth was attached to people without disabilities, and lesser worth was attributed to people with disabilities. Later, the economic worth of human life under the Nazis proved a key distinction for creating and sanctioning genocide against people with disabilities.


ask questions, research, do not just swallow this mess whole. The road to socialism is hidden in the technical language.

ohhhhhhhhhhhh boyyyyyyyyyyyy

came home to find BIG sister had dolled up LITTLE sister....mascara!! ACK! She is too little to look this BIG.

Maybe I'm crazy, but

I was lying in bed last night thinking about today being Alex's birthday. He would have been 12, and truth be told,I cant even imagine anymore what he would look like. Twelve is so far from 3. I was thinking about his last day, I had read the report that he was home alone with the man who killed him while the mans wife went to the store to get stuff for burgers. Alex never met a burger he didnt love. :) He never got that burger. That boy loved food so much, and in this mommas mind, he should have his burger.



So today I went and got his Birthday ballon, and a little red truck like the one he so treasured, and a burger. And I went to his tree and left it. No, Alex wont ever really have that burger. But maybe he will know that his Mom really loved him, and wished he had had the burger, and gone to Disneyworld, and grown into the fine young man 12 would have brought.

I cant change the past, but I can honor his memory today. Cheeseburger, just ketchup, no pickles...just like you liked it, boy. Happy Birthday

Sometimes Thou may'st walk in Groves,
which being full of Majestie will much advance the Soul.
- Thomas Vaughan, Anima Magica Abscondita

signs of the times

Ciarra says:

"Michelle, this bra is wicked awesome. But I would like it to be in hot pink. Can you get that for me, please?"


Her: "Michelle, please dont tell Julianna that I love Barney. Julianna doesnt like Barney. But she likes Barbie Diamond Castle and Hannah Montana. Its ok if I like Barbie Diamond Castle and Hannah Montana. It is NOT ok if I like Barney. Don tell her,ok Michelle?"

(I tell her it is ok that she still likes Barney, that she should not be afraid to be who she is.)

HER: "I do. Just dont tell her that, ok?"



Her: Mom, these skates are broken.
ME: They arent broken, its just hard to balance on skates.



Her: Well, then my feet are broken, cause this is not working.





Her: "Michelle, when you was a little girl, did you like Barney?"
ME: When I was a little girl, Barney wasnt born yet.
Her: "Wow, you must be really REALLY old."



My little, BIG girl.



<

The Waiting List

(there are seveal parts, keep watching.)

Hudson's Heroes!!

My young friend Alex is raising money for a very worthy cause, Special Olympics!!

The MSP Polar Bear Plunge benefits Special Olympics Maryland and the 10,000 children and adults with intellectual disabilities who experience the life-changing benefits of participating in the organization's year-round training and competition programs — all at no cost to themselves or their families.

Join me in my efforts to support Special Olympics - Maryland!

This will be Alex and his dad Chip's third year jumping into freezing water! Alex is an awesome 17 yr old young man who happens to have Down syndrome. He is a go-getter, a charmer, and even though he is too grownup for me to call him cute, he just IS. Adorable even. If you can help in any way, please chip in a few bucks, they take PayPal.

Good luck Alex!!

Friendship

“A friend is someone who lets you have total freedom to be yourself.”

~Jim Morrison

neurons and synapses and cells...oh my

http://www.pubinfo.vcu.edu/secretsofthesequence/

fascinating stuff. Someday, DS will be cured. Will that be a good thing or a bad thing? I guess it depends on who you ask.

updates on life

Well, regular readers know that we made the decision ( a HARD one!) to have Ciarra spend afternoons out of the regular classroom. We started this just before Christmas break, and yesterday was her first day back. She is a MUCH happier little girl now. Huge sigh of relief, I think we did the right thing.

Still, it is hard to let go of something I fought so long and hard for. I believe in Inclusion, theoretically. I think that it is probably the best thing for our kids with DS...if the schools are set up for it to work. Don't get me wrong, our school truly bent over backwards to make it work. But Ciarra was the first to really have a significant disability and be fully included, every step was like re-inventing the wheel. No one had any experience with modifying curriculum, there is no "Inclusion Specialist" as there is in bigger schools. We all gave it our best shot, but for Ciarra, it was incredibly stressful.

Easy for me to believe in Inclusion, but she is the one who had to go in every day and struggle through it, with people who were also struggling through it, all doing their best to make it work but with NO parameters and no previous experience of any sort. 4th grade is not the time for Mom to be hanging out, helping pave the way, it is a time for independence. Independence is hard to come by when you are in a classroom with 22 other kids who generally "get" things much more easily than you do.

I imagine it had to be really tough on her to have to work so hard to get things right, only to find the other kids had already moved on to the next subject. Dont get me wrong, Ciarra is academically doing very well. She is currently working on an Abe Lincoln project she is really into. She loves math, she loves to read. But for her, every subject requires that much more concentration, that much more time, thought, and desire to get through. To always be trying to keep up is hard, never getting a breath or being able to be first with an answer. Like her momma, my daughter likes to be first, fastest, smart enough. She is incredibly competitive. Who doesnt want to be right more often than they are wrong? It was destroying her will, and killing her desire to even go to school.

So for today, this works. I am still wrestling the demons of Inclusion in my mind, still wishing it might have worked better. But in the end, it is Ciarra who matters most. Her happiness is so much more important than her academics. Hands down, if I had to choose, it would be a happy and well-adjusted child over "fully Included"...any day of the week.

Letting go of that has been very different than I expected. I expected to feel guilty, to feel beaten, to be very sad. It was letting go of normal, again. What I have discovered is that it has been very freeing. I love to see her smile, as she tells me about her day. I have asked her at least ten times if she wants to go back to the other classroom, or if she likes the new schedule. She doesnt just like it, she loves it. She is excited to go to school, she loves to tell me about her days. She wants to work hard, she is happy. That is all I need to know to be sure this was the best decision...for her.