realityblah: February 2010

Sunday, February 28, 2010

As much as Jenny McCarthy makes me crazy...

... this post in Basil and Spice gets enough wrong in her evaluation of the Time article that I wondered what she was reading. The author inferred the possibility of Landau-Kleffner, and even though she doesn't blame MMR specificially, she is still part of the green vaccine movement and still blames the vaccine load. Same difference to me. Lordy, way to be heavy handed on the other side.

"An article this week in Time Magazine inferred that her son, Evan, had a different neurologic disorder (Landau-Kleffner syndrome)—NOT AUTISM. Take a look here for a nice summary in Hollywood Life. According to their report, Ms McCarthy has reversed her position and now does not believe that the MMR vaccine was the cause of her child's developmental problems.

If this is true, her kid never had autism at all and she's suddenly changed her mind about vaccines. OK. The only problem is, there's a lot of blood on her hands. I'd like her give a public apology or have her volunteer for a public service campaign on vaccines with the CDC. It won't take back all the damage she has done, but it would at least it would show that she had some acknowledgment of personal responsibility. A small article in Hollywood Life is not enough, lady. But,what am I thinking? She's a celebrity. She has no personal responsibility."

Saturday, February 27, 2010

Autism Articles... there are a few...

Hollywood Takes on Autism from The Daily Beast - sort of the current face of autism in the media, from Dear John to Parenthood.
The Autism Vaccine Debate: Who's Afraid of Jenny McCarthy? from Time - I need to reread this article and digest this article before I write about it. When you have been given three copies of Mother Warrior, you start to feel that you are getting Jenny shoved down your throat. Add to it that she had success in an area where you have failed (biomedical interventions) and embraced the theory that you never really have (vaccines), you start to have very mixed emotions about the woman. On one level, I respect her greatly. On another, she makes me crazy. Anyway... more later. But read this...
Seeking Common Ground on the Vaccine-Autism Debate from the Boston Globe
The Bonding Hormone That Might Cure Autism from Newsweek on Oxytocin

Tuesday, February 23, 2010

Betrayed by Bob Marshall

It shouldn't be a shock. He's a politician, right? And he honestly sees nothing wrong with what he has said: he was only referring to woman who have had abortions being more likely to have children with disabilities. From Insidenova.com:

“The number of children who are born subsequent to a first abortion with handicaps has increased dramatically,” Marshall said at the news conference. “Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children."

When I called his office yesterday, their defense was that he didn't what was initially reported, that he had essentially said that increase in children with disabilities was God's punishment for abortion. So since he didn't say that, that makes this all okay, seemingly to what he is putting out to the media.

None of this okay.

I will explain why. When you have a child with a disability, everyone asks the same questions of the mother, whether they are a complete stranger or a close relative. What did you do? Did you remember to take your prenatal vitamins? Did you have too many sonograms? Did you take medication you shouldn't have? Is it in your family? (And they never ask if it in his...) Did you drink? Did you smoke? Did you take drugs? Even within my own disability community, there is the blame game - did you give him vaccines? That theory was out there when Jimmy was a baby and I chose to do it anyway. I have never thought that it caused his autism, but the looks that you get sometimes... from people in your own community, other parents who's kids have autism, like we had more information and we did this to our kids anyway. It is so upsetting.... I digress.

Ultimately, it all goes to the same thing. What did you do to make your baby this way? These these things can't just happen. They don't just happen. If they just happened, you would have to acknowledge on some level it could happen to you. If you are blessed enough to have happy, healthy children, often that is the last thing you want to have to accept. It is easier to blame us.

Bob Marshall has now added one more thing to the list. Congrats moms of disabled kids everywhere, we get to be asked if we have had abortions in the past. Trust me, it will happen. And if we aren't asked often, only slightly more often will people think it. You think I am kidding. I have been asked every question under the sun. Asked if I took my vitamins. Asked if I drank too much diet soda. Asked if I drank too much regular soda. Coffee. Alcohol. Drugs. Ate feta, sushi, salmon or anything else on the don't list for pregnant women. I have been asked about my gynecological health by a pregnant mom who saw me with Jimmy and was worried about autism. She tried to get personal before I shot her down for being rude. I am all for educating, but it was ridiculous. Someone will ask me, thanks to Bob Marshall, if I had an abortion. And more will think it... just as often think about "What's wrong with that kid? How'd that happen?" when Jimmy lays down in the middle of Target kicking and screaming, staring at him like he is a freak show, as if he isn't a person.

Because of what Bob Marshall said, the way he said it - that may not have been his intent to throw every last woman who has given birth to a child with a disability under the bus of abortion, that was the net effect. This world that we live in is about people staring and pointing at us and our children. There but for the grace of God... Whether it is to assure themselves (falsely) that it could never happen to them or to make them feel superior, life is the point and stare. And Bob Marshall has slapped a scarlet A on us and, with the gracious help of the media, shined a spotlight on us and our children and told them where to point. You can't get much more cruel than that, intentional or not. His apology to date doesn't cut it. Not by a long shot.

....One more thing...

Gov. McDonnell, before saying this:

“They were wrong and offensive comments and we should do everything we can for young children who are disabled and provide the best safety net we can,“ said McDonnell, a former delegate from Virginia Beach who has known Marshall for many years.

You might want to remember that you just said in your budget proposals that you want purge the EDCD waivers by 50%, which is serving many of those children that you are referring to in your quote. Including mine. Get rid of consumer directed hiring of attendants and respite providers, used mostly with children and go back to agencies, which mostly serve seniors. What safety net? I don't think there is any safety net or intention of serving our kids in your budget proposal. Which side of 50% is Jimmy sitting on? I would like to know, because you and the General Assembly are putting families with special needs through absolute Hell right now. Mine included. Delegate Marshall has only added to our pain.

Thursday, February 18, 2010

Governor McDonnell Attempts to Ruin the Lives of Families Suffering Through Autism

The governor’s proposal to cut $63 million from in-home services for people on Medicaid waivers assumes that half of them won’t get any services at all. “The need is not going to be met,“ said Heidi Faustini at The ARC of Virginia.

So the after hating on Kaine for proposing respite cuts, the other shoe has dropped and come to find out that instead of finding other ways to cut the budget, Governor McDonnell is going to do it by cutting education and services to the disabled. After finally getting services in place for Jimmy, the new governor, the pro-family, pro-life governor wants to purge 50% of those getting the EDCD waiver off the roles. He also wants to get rid of the consumer directed hire and force everyone to go through agency hiring. Which side of the cut Jimmy would be on of that dreaded 50%, I don't know, but I don't want to wait a year to find out.

It's crushing because Jimmy's life has improved with the help. My husband and I have both been able to get surgeries that we needed because of the help in the home. Jacob, who was crumbling without attentive parenting, has thrived these past few months and reclaimed something of a normal childhood of sports, school, and friends without Jimmy being the sole focus. Our lives and our family had improved with the help. The stat I like to remind people of is the divorce of 85% among families with autism. These services preserve families and stability. Again, that stability will serve to keep Jimmy in our community and our home much longer than if I was a single parent going this alone. Now we don't know what the future holds. We just know that the governor doesn't care about the needs of children of autism, the needs of families like ours, or the elderly or the disabled in general.

So now I live in a state that does not require health insurance to cover therapeutic interventions for my child, does not provide adequate funding to local school districts to provide a free and appropriate education for him, and now will not provide the community based attendant and respite assistance that, over the long term, will allow him to continue to live in our home and larger community. (Trust me, handing a child with behaviors at 8 is very different than when he is 18.) Pass the buck much, Virginia. I pay health insurance, I pay taxes and today I feel like I am getting the finger from everyone.

I am fighting so Jimmy can have the best future possible and he can continue to live with me as long as I can physically do it. Then maybe his brother will be in a position to take over. It's better and cheaper than institutionalizing him. Seems that the governor can't see the forest for the trees, because that is exactly the path he is setting kids like Jimmy on with this budget. What he is proposing isn't just ill advised, it is monstrous.

I hope to God that the General Assembly does better by us in their proposals and that their ideas are better than McDonnell's and can go forward. They can't really be any worse at this point.

Wednesday, February 17, 2010

Is it spring yet?

The snow is destroying my mood. It is destroying my house. I am finally back to work and the boys are back to school. I am amazed my sofa survived the blizzards, because Jimmy just climbed all over the furniture. We did lose two Ikea chairs - they went out with the trash today as they were beyond repair. We still have two feet of snow in the backyard with no access to the swingset. We need some melt badly. When I was home, Jimmy was on the computer, Jacob was on the Wii, and since Jacob flips when I leave the same floor he is on and you can't leave Jimmy unattended, I spent a lot of time with the laptop on the internet, specifically Facebook... playing Farmville and Uno and seeing how many people I really want to friend in the world. I have finally burned out on Farmville - I just harvested my last crop and left my fields fallow tonight until I actually want to play again.

In the world of autism... still waiting for Kruge/UVA Charlottesville at the end of March. Heck, I am still waiting for March. March. I want March.

Saturday, February 13, 2010

Washington Post: Sarah Palin should beware of exploiting her youngest child

A great commentary on the whole Sarah Palin situation, sharing my favorite segment:

Palin wasn't wrong about the inappropriateness of the remark, for which the president apologized to the Special Olympics before the segment aired. But were her objections primarily those of a wounded mother -- or those of a heat-seeking politician? Will we be hearing from Palin every time someone uses the R-word or makes a lame joke?

Well, no, not every time. When Rush Limbaugh used "retard," suggesting a "retard summit" at the White House, it was "satirical," Palin recently explained to her Fox News colleague, Chris Wallace. When Emanuel used it, it was name-calling. It isn't clear whether Palin considered Rush's memorable mimicry of Michael J. Fox's "fake" Parkinson's disease symptoms another demonstration of satire or mere hideous cruelty.

Given that Palin obviously made an excuse for Limbaugh, whose stab at humor was nothing resembling satire, means that her "teachable moment" via Emanuel was really using her child as a political tool.

Thank you Kathleen Parker!!!! And I didn't know that Limbaugh said that about Michael J. Fox... how outrageously cruel a human being is he. What sort of person is Sarah Palin (or anyone else for that matter) for defending someone who says stuff like that? There are all sorts of great Republican women who are ready, willing, and able to be president. Sarah Palin shouldn't be on that list right now if this is the type of person she supports.

I am in the mood for shoes...

I spent entirely too much time browsing Piperlime tonight. The Keen maryjanes are probably what I would get and wear the heck out of, because they are totally Mom shoes. But I am trying to find my girlie girl again. I love the Betsey Johnson's in the middle, but I honestly think I have forgotten how to walk in anything like that. Having said that, I am a woman and I should totally relearn. The Nine West pumps are cute, I love the pumps, and they would be more easily walked in. The cowboy boots... cute as hell. I want them. I don't need them. I need heels more, but I love them. The last shoes... I see these everywhere. I can't decide if I like them or not. The heels are always incredible way high if they aren't a wedge - I have never been able to walk in a wedge without rolling my ankle - but I can't decide how I feel about the look.

I really should buy a pair of heels and clean house in them until I have mastered them enough to go out in public. I am sure I am making more out of this than it is, that it is like riding a bike, blah, blah, blah, but I really stopped wearing them when I got pregnant. With small kids, definitely not practical. With Jimmy the runner - I don't even wear flip flops with him now. Only foot wear that withstand pursuit. But there are something that I just want to start taking back in my life. Some are big, some are small. I am not sure which column I would put heels in right now, but I am taking them back.

Friday, February 12, 2010

What I Just Posted on Facebook...

(And really, if you know my name, you should friend me there too...)

Going to leave the house with both of my kids, without the aid or assistance of anyone else. Wish me luck. This usually ends badly.

Snowoverload

Never have I been so busy doing so little. My days have been one endless blur of keeping Jimmy's clothes on, his body off the furniture, and him out of the pantry and away from the fruit snacks. This week has been the object lesson of why this child needs the structure of year round instruction. I pity, absolutely pity what Ms. K is going to get back next week. Jimmy cries for home when I drop him off at school, but he cries for school when he is at home, which means transitions are going to suck next week and Mr. M is going to likely going to take another nut shot (happened a few weeks ago.) His attendants, especially E, have done their very best to keep coming regardless of the weather to help maintain structure for him, which maintains structure for Jacob by extension, but it has been a struggle.

I am honestly considering venturing out with both of them this morning by myself, which is something I never do. I need to get a gift, but I just need to get out and so do these kids, no matter how daunting a task it is for me. A trip to Fair Oaks may be in order.

Wednesday, February 10, 2010

How has your week been?

Tuesday, February 09, 2010

A Response to a Friend's Facebook Post...

It sort of nicely sums up how I feel about the whole Rahm Emanuel flap...

"And I would like to say Sarah Palin is a complete hypocrite for saying that it is okay for Rush Limbaugh to use the word, categorizing his use as satire. Who cares? My son is autistic and he is eight - yes, I have heard the word applied to him and it crushes you. For about thirty seconds, then you attack. I have never taken it lying down. Sarah Palin owes my son an apology, as does Rahm Emanuel and Rush Limbaugh."

I don't think I will ever get it from any of the three of them as they are all too arrogant for their own good. No one can justify using that slur, whether it be personally or defend someone of a similar political affiliation of doing so.

More tomorrow. I just realized again I haven't posted in a week. Never have I been so busy doing so little.

Wednesday, February 03, 2010

A local argument that bears repeating...

Because it affects special education, regular education, my kids, my neighbors... I can't believe not one, but two governors proposed slighting our region like this.

Reprinted from the Washington Post:

Insult from Richmond
By Sharon Bulova, Corey A. Stewart and Scott K. York
Education is the silver bullet. Our children are our future. These are things we know intuitively, and in these uncertain economic times, we must continue to strengthen this foundation to ensure our economic recovery and success in a global marketplace.
As governments at every level face significant budget shortfalls, elected officials are wrestling with difficult decisions and painful cuts. In Northern Virginia, unfortunately, our challenge is exacerbated by a recent state budget proposal to freeze the local composite index (LCI) for K-12 education.
The LCI is the measure used to determine state and local shares of K-12 funding in Virginia. The formula uses data (growth in student population, local income, retail sales and property values) to determine a locality’s ability to pay for its schools. It is part of the routine distribution for education funding that occurs every two years. It has been in place for four decades.
Traditionally, the funding formulas disadvantage Northern Virginia, as revenue is redistributed to areas with fewer resources. This year, however, with property values plummeting and school enrollment growing, the formula would actually trigger an improved share of funding for Northern Virginia jurisdictions.
But in his final budget presentation in December, former governor Tim Kaine proposed freezing all Virginia localities at the previous LCI for one year. This move would cost Fairfax, Prince William and Loudoun counties $118 million. Ironically, localities outside of Northern Virginia, whose comparative wealth increased, would get additional assistance.
Northern Virginia is proud to be the economic engine of the state. We put significant local dollars into K-12 because we know that our first-rate educational system is a key to our quality of life, bringing major Fortune 500 companies to our area, benefiting all. Our residents and businesses understand that maintaining excellence in our schools is a critical component needed to lead us out of this national recession.
A freeze in the LCI is patently arbitrary and an insult to our jurisdictions. We have played by the rules, and this unfair change would pull the rug out from under us at a time when we can afford it least. Gov. Robert F. McDonnell and the General Assembly must not allow this proposal to stand.
Sharon Bulova (D), Corey A. Stewart (R) and Scott K. York (I) are chairmen, respectively, of the boards of supervisors in Fairfax, Prince William and Loudoun counties.

Journal Retracts 1998 Paper Linking Autism to Vaccines

Lancet finally did it... and not a moment too soon. I have never been a big believer in the vaccine theory, which is a lonely view to hold in the world of autism. When things started to change for Jimmy was when we hit the world of ear infections and antibiotics at the age of nine months. But I can't say for certain if they are related. But with all the screaming about MMR means all the theories that I have heard that hold water with my experience - autism as an autoimmune disorder (my family carries a genetic marker for a certain one), any link to antibiotics, and really any other theory as to why kids like Jimmy are the way they are doesn't get explored they way it could or should. And every night I go to bed, I wonder if I will live long enough to see him get any better or if I will die leaving Jacob an impossible burden. It's hard to have hope when you live in state where year after year your General Assembly denies even the most modest initiatives towards therapeutic care. When parents can't even embrace other parents who have different ideas about how you have arrived at autism's door. It took me five years to become completely depressed and cynical. I am hoping to find my way out. Maybe the actions of the Lancet will be some momentum to start. MMR as the cause of autism does not equal gospel.

Next, if we can convince people that Hugh Hefner did not Jenny McCarthy a medical degree, we'd be getting somewhere (GFCF works for some kids, but it didn't work on mine, yet everyone feels the need to give me the books...)