Nancy Pelosi's Sarah Palin Moment

Good God in heaven - it's been a rough week for anyone who loves a person with autism. I'm rather fond of three girls with autism, my daughters Mia, Gianna and Bella.

Earlier this week, Nancy Pelosi excluded autism from H.R. 3200 the healthcare bill. You can read about that sharp stick in the eye over at Age of Autism. Way to go, Nanc, hope that new grand baby you toted around at your swearing in (kinda like Sarah Palin, doncha think?) is talking and pointing and able to have one formed poop a day instead of seventeen explosive, acidic bouts of diarrhea like some kids I know. I saw you surrounded by your grandchildren. So touching. Really. My mother would like to know why you threw her grandchildren under the bus.

On Friday the 17th, there is a major briefing on Captol Hill on the current state of autism research and treatment (HERE)courtesy of Reps. Carolyn Maloney (D, NY) and Christopher Smith (R, NJ) and featuring both David Kirby (original HuffPo blogger) and Mark Blaxill of SafeMinds. Only 39 of 158 members of the Coalition for Autism Research and Education were signed up to attend as of Tuesday. W-T-F?

Meanwhile, the government will spend $1,000,000,000 for a fast tracked (that's FDA shorthand for holy shit you got this to market how fast and did you bother to test it?) swine flu vaccine for a flu that as far as I can see, hasn't knocked out a small street in E. Elbow, Rhode Island, let alone reached pandemic proportions. I saw a headline this week, "27 Cadets with H1N1 - none hospitalized." Don't go getting all bat guano on me about the Swine Flu - that's not the point of this post. yes, we need to be prepared for an epidemic. And no I don't want children to die of a preventable disease. OK? The point is, that when the US Government feels there's a real (or perceived) threat, or at least an opportunity to accomplish some other goal, they can mobilize money and "stuff" reaaallly fast. Think Iraq war after 9/11 for the Republicans and now H1N1 "prevention" for the Democrats.

So it seems to me that all this autism "awareness" we've been talking about for so many years now hasn't done jack squat to convince our leaders that families are falling apart because of autism. Loved ones are suffering. Kids are creeping up to the end of school. You think turning 65 is scary? Try having a kid with autism about to turn 22 and age out of school - and there's nothing for him to do and no where for him to live. Now imagine you're turning 65 with a 40 year old adult with autism to care for all by your lonesome. Makes that colonoscopy you need every year look like a walk in the park, eh?

A few years back, I had the pleasure of meeting both David Kirby and Suzanne Wright (Founder of Autism Speaks) on the same day at an event in Boston. I asked Suzanne Wright a simple question: "Is Autism Speaks going to find out if we're creating autism in our kids?" (She answered, "yes" at the time, but I've since realized she is a figurehead there and not responsible for the research. Shame). I believe we are creating autism just as we are creating diabetes, nut allergies, cancer, asthma, MS and other chronic diseases.

Frankly, if you still believe autism is fully genetic and you're just "born that way" your head is either in the sand or up your ass. Or, if you've been at the beach recently, it may be up your sandy ass. Either way, if this is your belief, I suggest you stop applying for research grants. You're squandering precious resources that we need to prevent another generation of autism. Get the flurk out of the way. And then read Autism: It's the Environment, Not Just Doctors Diagnosing More Disease" from SFGate.

Autism awareness is not enough. In fact, it's really nothing, as has been proved by the disregard our leaders show toward people with autism. Of all ages.

I'd rather no one I know ever have heard of autism, if it meant my girls would have more treatments to hone in on a cure. Call me selfish, but I sure would like to hear my Bella say, "Hi, Mom. I'm hungry, could I have something to eat?" Or watch my Mia go to a movie with a group of friends. Or wonder how my Gianna is doing at sleep away camp, missing her every minute.

Of course, "cure" is a dirty word for autism. We live in a world where docs will give an 87 year old man a pill to get an erection. They routinely give chemo and radiation to patients with a next to zero prognosis of survival from rare cancers. Fifty and sixty year old women can give birth thanks to new fertility techniques. Heck, my 86 year old Dad was offered heart surgery to correct his heartbeat so he could live out his final years more comfortably. But parents are told, "Take your 3 year old home. He has autism. There is no cure. Get him therapy and call a group home." Unacceptable, friends. Un-freaking-acceptable.

I have a wishlist for autism. First, I want prevention. I don't want another family to go through the hell of struggling to help your precious child with autism. For those for whom we can not prevent autism, I want a cure. Meaning I want those kids to be able to function in the world. And for those for whom a cure is not possible, I want care. Meaningful, safe, dignified care.

It was a rough week for all of us who love someone with autism. What's next?

Comments

[hendersonwood]

Part 1:

Go Kim Go.

Everyone - It's our job to continue to talk re: ASD, Type-1 Diabetes, MS, Lupus, ADHD, Allergies, Parkinson's, Alzheimer's, Celiac Disease... you name it. They still don't think ASD is "medical", nor what is happening to all of us is environmental. For fun... type-1 diabetes is going up 3% a year.
http://www.medicalnewstoday.com/articles/151775.php

Just this afternoon.­.. I met another mother who is a biophysics prof and does MRI-brain research. Me: "On what?". Prof: "MS"... and I joked "One of the multitude of diseases I'm going to get." Luckily, I was standing next to Aspergers mom (w/hypothyroidism) and a mom who has Type-1 diabetes whose brother has ASD! Both were hooting along with me. The MS-brain researcher was dumbfounde­d... "autism isn't an autoimmune disease." "Oh, yes it is" we all chimed in.

Our kids deserve healthcare. Even in Canada (where I am): different provincial healthcare programs pay for ABA in varying degrees; though not all provinces are equal. But "health" problems are 100% covered: eg., mito, etc.

And as an American living in Canada... who for 32 years had the privilege of having healthcare in the states (four different states and experienced many different plans). NOTHING compares to Canada.

[hendersonwood]

Part 2:

There are problems; nothing is perfect. But don't let the Republicans fool you. On the whole, our healthcare is amazing and it is much cheaper. Imagine the entire staff at your doctor's office concerned with billing doesn't exist. It really is amazing. If every business could move here, they would (educated population where government pays for healthcare).

Did I have to wait six months to see a developmental pediatrician for a diagnosis? Yes. I bet you have to wait at least 3m in the States to see a MD specialist (if you are insured). The Canadian medical system is fair. My child doesn't qualify for ABA in my province (too functioning). The other 80% do, and yes, they have to wait a long time, but they still get funding, NO MATTER WHO THEIR PARENTS ARE. I cannot complain (at least not too much), as that wouldn't be good karma.

AND, my son has been tested for mito, hypothyroidism, etc. We have an ASD social worker via the hospital who offers me advice all the time. All of this is with ZERO paperwork on my part. Oh, and did I mention that our DAN! is covered? Yes, you read that correctly.

Beat that Republicans.

[hendersonwood]

Part 3:

And let us not forget that they actually educate everyone here too. Education is Provincial and NOT based on your local tax base. And you better bet, the profs/doct­ors/lawyer­s demand that THEIR kids get a good education. So... unlike, say New Jersey, where being born in Princeton vs. Newark makes a HUGE difference­... the same example doesn't exist here. Yes, of course, socio-economics plays a factor in all schools. BUT, they believe that every child deserves a decent Provincial education. I laugh at what they think is expensive for world class universities (hugely subsidized by the Provinces). The income bell curve is MUCH flatter here... the rich aren't as rich, the poor aren't as poor and the middle class is truly HUGE and much wealthier in comparison to the USA.

I find the Provincial education to be astounding, that "your" children include the kids in the next town. This is unbelievable and even more beautiful than the healthcare. The "yours, mine and ours" mentality is incredible. This really is a wonderful country.

[mikies]

When those who produced, ignored, denied, exacerbated, lied, refused to study, failed to treat, withheld insurance, and other wise discarded the children of the autism epidemic, are held accountable for their unconscionable behavior,.­........ what will be their defense?

Will attorneys convince their clients: there's only one plea they can make in their own defense, "I had my head up my ass?" .........o­r...."I had my head of my sandy ass." Will congressmen and speakers of the house claim that insurance company's forced us to "stick our heads up our asses,....­..or else."

Will the American Academy of Pediatrics claim, "We had to stick our heads up our asses, so we couldn't see the autism epidemic and the damage we likely caused."

Will the media claim, it was a simply a quid pro quo, between pharma, "get your editors to stick all their heads, up their asses, until we say otherwise, and we will continue spending big bucks on advertising.

This might be their only defense.

How else can you explain what happening right before our eyes.

[lovemd]

Great article Kim. Honestly if I hear one more word about the swine flu "pandemic" I will go ape shiz. I really really will. My husband is an MD and he's seen quite a few hospitalized kids with positive H1N1 tests- they have the FLU, which consists of a fever, aches, and sniffles. Then they get some fluids and motrin and get better and go home to live normal kid lives. The fact that, in these hard times, the guv just threw $1bil at this non-problem is truly making me crazy.

[nhokkanen]

I still say one great way to get legislators' attention is for parents to turn their ASD kids loose en masse inside the politicians' offices. Just a few minutes exposure to the chaos that many families go through 24/7.

In 2002 my son was hell bent on trashing his neurologist's office. Unfortunately his solution was an Adderall prescription that proved disastrous. But at least the child's issues were noticed.

[JeanneCant]

Kim, this piece is why you are a Goddess. I remember once you told me you wish you didn't know me - that our paths had never crossed. I got it then, I get it now. I wish the same. But if we are forced to live this horrific reality, then there is no one I would rather stand by then you. Warrior Mom to three. Warrior Friend to countless. Warrior Advocate 24/7. You knock my socks off.

For our government to allow this tragedy to happen to our children and us, the families, is unforgivable. Yes, I said it... UNFORGIVABLE. I can forgive a lot, I do every day of my life, but I will never, EVER forgive what happened to my son and so many other children.

This has truly been the week from hell... which is like the crappy icing on a crappy autism cake. Thanks Nancy.

"God help us from those who believe that they are the sole possessors of truth. How we manage at times to agree willingly to become prisoners within our own minds and souls of beliefs and ideas on which we can never be flexible."
King Hussein I

[HeidiN]

Thank you so much Kim. We need to start showing our anger. I am sick, just sickened at all what I have learned on my journey to recover my children. My kids are now indistinguishable from peers. I try very hard to help others be successful. It's very upseting when most doctors and governmental agencies not only do not help at all, but stand in the way of our successful journey. Thank God for the good-heartened doctors who sadly have to risk their licenses due to insurance complaints, when they do treat and recover our children. Recovery is real, autism is preventable and reversible!

[deenonna]

Speaker Pelosi,
It is my understanding that your plan regarding HR3200 is to exclude insurance coverage for children with autism. Based on news coverage, I thought that the Health Reform Act was to be broad based and is to provide medical care to those in need. How can you discriminate and deny medical coverage for one group of children who are in desperate need of this care???? This is unconscionable, unacceptable, unbelievable, and WRONG!!!!! You are impacting the lives of hundreds of thousands of autistic children and eliminating any hope for improvement or recovery. That's unforgiveable and shameful. This is devastating to the children and their families. These children and their families suffer medically, emotionally, and financially every day and no one seems to care. It's especially hard to accept that the US government plans to alienate these children!!!!

[dugmaze]

"Frankly, if you still believe autism is fully genetic and you're just "born that way" your head is either in the sand or up your ass. Or, if you've been at the beach recently, it may be up your sandy ass."

Love it !
Totally caught me off guard.
I agree with you 100%.

[KFuller]

Nancy Pelosi needs to come out and face families affected by Autism in person. I want to hear the reason.

Almost 17 years ago, insurance paid for my maternity care. Our son's birth...co­vered. Our son's well baby care...cov­ered. Our son's immunizati­ons...cove­red. The 24 rounds in 2 and 1/2 years, with antibiotics for ear and sinus infections that followed all of that well baby care...cov­ered. The meds for the Asthma that followed that well baby care...cov­ered . The Nebulizer needed after that well baby care...cov­ered. All of the meds for the skin infections­...covered­. Prescription strength meds for constipati­on...cover­ed. A normal happy baby, a baby developing right on schedule, a baby beginning to talk, he walked on schedule, he played peek-a-boo, pat a cake, and on and on. And the he disappeared.
Assessment for speech delay...co­vered. Actual speech services for the suspected Autism....­.silence.
Assessment with Neurologis­t...covere­d*sometime­s*, As the regression got worse and worse,Payment for heavy off label drugs...co­vered.
Payment for drugs to counter the side effects of the off label drugs...co­vered.
Help from our Pediatrici­an....sile­nce.
Help from the State of California­...minimal­, unless we go to fair hearing...­For almost everything.
Answers for the dyskinesia left from the off label drugs...si­lence.
Thank you Kim for telling it like it is. I wish you had used stronger language. Maybe it would have gotten someones attention.

[kwn]

Well said Kim, well said. Basically our politicians dont give a rat's ass about our kids. They SUCK.

[linwessels]

Thanks Kim for continually speaking out on our behalf and laying it out there for the all world to see! Myabe one day some will listen?! We can only hope......­and keep trying.

As for the politicians, there most certainly exists a special place on the other side for them.

Keep on keepin' on, my friend.

[Roosmama]

My son has a brain injury caused by exposure to toxic chemicals that are now widespread in our environment, and that have been known to cause the exact health problems that he has. If this were a crime investigation it would be an open and shut case. He has lab work showing a clearer connection than almost any health issue of anyone who I know who has had costly treatment. My family pays the price everyday for someone else's cheap produce, and someone else's cheap plastic toys, and someone else's big huge profits. The fact that our government would keep it that way, rather than hold insurance companies (who we pay so much money to) to hold up their part of a contract (to provide the service that we are required to pay them for) is reprehensible at best. Who needs terrorists when our own government will sanction this? If you think that that is a strong overstatement, then you haven't lived in the world of ASD.

[carlsbadmom]

Thank you, Kim! Those of us living with autism are feeling increasingly marginalized.