Saturday, March 08, 2008

Saturday Night Retropective: The Way It Was

One small voice

And here I take my own small stand in the Poling "debate."

In the Poling case, it was determined that vaccines exacerbated a mitochondrial condition in one child. That catalyst resulted in problems for that child that looked like autism. Is the child autistic? I'm wondering if that is more of a political question than a medical one. So here my politics: yes, the child should be considered autistic. I'm not convinced that what we term "autism" is any one condition- it appears to be a group of behaviors, sensory problems, and communication issues that we group under the umbrella of "autism" just as all the religious traditions of India are umbrella-ed under "Hinduism."

Does this mean vaccines cause autism? Well, no. It means that a child with a mitochondrial condition may have been negatively impacted by vaccines... which has not actually been proven, by the way. What we have is circumstantial appearance, which is enough to get money for her treatment from the government. That is what this vaccine fund was set up for, and so yes, I think they are entitled to the money, and good luck to them. May they come through this with acceptance of their daughter- a beautiful girl- just as she is, and get her the support she needs.

This decision changes no facts about my own child, though I may do some research on mitochondrial disorders, to make sure he doesn't have one. If I found he had something like that, and there were other (legitimate) treatments, that would be important. I have already emailed Joey's doctors about it. I'm not the kind of mom that dismisses things out of hand- I check it out. After all, I suspect this mitochondrial thing would have "autism-like symptoms" even without the dreaded vaccines, right? Because it just "aggravated" the condition? So I'll let you all know what the doctors say. Gotta love email.

So there it is. Good luck to the Polings. Sorry this didn't prove anything. Sorry this whipped up the anti-vaccine crowd as if it had proven something. Ultimately, I suspect that this will only lead to more folks not vaccinating, increasingly the chances of my own kids getting these dangerous diseases. This should have been a quiet case, settled and moved on, nothing more to see here.

>>UPDATE: The email our developmental pediatrician sent back: "No." So there it is.<<

Friday, March 07, 2008

In the Beginning

It is a little-known trivia of my life that I one time re-wrote the Book of Genesis as a way to pass the time and waste lots of study hours in college. However, this version is much, much better.. It's much funnier if you regularly visit I Can Has Cheezburger, so if you don't, do that first.


Hmmm. We installed a nightlight in Andy's room last night. Funny, we had no screaming, no visits from that child, and no problems getting him to go to sleep in the first place. This time last year, even a sliver of light in that room resulted in all-night problems. How children change as they grow up... we're glad he had a good night. Here's hoping for a trend.

Wednesday, March 05, 2008

If there was ever doubt

Well, I'm not voting for McCain. No, politicians, like the rest of us, can't know everything about everything. But they have advisors. And if you can't pick decent advisors, what kind of president are you going to be?

And for folks who don't think people believe sham science, like that presented in popular media outlets and tv shows... well, presidential candidates do...

Wordless Wednesday: Dinosaurs Again!

Tuesday, March 04, 2008

Proud to be me

If you haven't read the latest article from Wired, go have a peek. It has its ups and downs, but its always good to know where the ups and downs are.

One comment (of several) that struck me was attributed to Fred Volkmar: "[he] likens [the idea of autism as a difference instead of a disorder] to telling a physically disabled person: 'You don't need a wheelchair. Walk!' "

This struck me because it has nothing to do with the idea of difference at all. None. Zero. Zip.

Nothing in the neurodiversity movement or the "difference model" says autistic people may not need supports. What seems to be said is that, just as a person who may need a wheelchair to be mobile is still human, so are autistic people. An inability to communicate does not mean a person is stupid. I know lots of people with Ph.D.s who are stupid, who speak for a living. It's not about telling the person in the wheelchair to walk. It's about making sure they have a fabulous wheelchair and ramps and that the doors are wide enough to get the chair through. It is understanding that a person in a wheelchair is mobile, they go out to lunch, go to the library, may need to go to the hospital.

It's about not expecting autistic kids to take SOL tests without appropriate supports. We don't ask the blind child to take a test without providing the test either orally, or in braille- and if in braille, we make sure they have been taught braille. We help them to be independent. Why should I ask any less for my child? Either child?

In a related blog entry in the NY Times, one of the commenters thought it was a "stretch" to have an autistic pride movement because "Disabilities are obstacles to anyone who wishes both to be a part of society and to function as an autonomous, independent adult, and the cognitive and communicative dysfunction that typifies autism is severe."

First, I take issue with the idea that there is severe cognitive dysfunction. This goes with the idea at 70% of autistics are mentally retarded... which we are learning is just not the case. I suspect mental retardation is no more prevalent in autistic populations than in the general population. However, this may be a problem to determine, as anyone with a communicative dysfunction or disorder is often labeled "mentally retarded" in our society. Heck, my Andy's articulation problems would at one time have slapped him with a label of being cognitively deficient or impaired! A person with a stutter may need speech therapy, but does that mean they are intellectually challenged?

Moving on to the point; what's wrong with it being a "pride" movement?

So much of the literature on autism is negative. That is part of the point of the Wired article- all this negativity ignores what autistic people can do, in favor of what they can't do. Funding is not for understanding, it is only for fixing. I still have no idea how you can even try to fix something if you can't see if or how it is broken, so I would think there would be more money trying to figure out how brains work, and how the autistic brain is different. But there isn't. Very strange.

I have wandered off the point again: pride. I certainly hope when Joey grows older and starts to explore himself and his identity, he can find pride in being Joey. Pride movements are not about fitting into society. They are about identity politics. It is about being able to seize control of labels and being who you are, and creating your identity based on who you are. There is nothing inherently evil in being autistic, it is an inherent part of who Joey is. Why not be proud of being who he is?

As Rachel says at Signing Time:
It doesn't matter what you look like
The things you can and cannot do
Just be a boy or be a girl
Feel proud that you are you!

What's wrong with that?

Joey has just as much right to be proud to be Joey as you have the right to be proud of being you. May he seize the labels and take control of his own identity with the same strength of character and joy of living as anyone else. People who love Starbucks. People who are Americans. We have a Welsh Society here, those people couldn't help being born Welsh. We have a fabulous deaf community here, and those folks didn't choose to be deaf. But there is power in seizing who you are, just as you seize the things you do control- just like the Mommy Club, the Bowling League, or the Western Line Dancing Society. We create pride movements and identities every day. Don't deny that to someone just because they don't share your identity.

Sunday, March 02, 2008

Food and the Preschooler

So you may remember my preschooler decided to stop eating foods. We didn't quite get to the neophobe stage, but it was starting to drive me frantic. We seem to have re-reached the normal "picky preschooler" level, so I'm feeling better.

This week, the menu is bacon, yogurt, poptarts, bacon, american cheese, milk, soda, bacon, calamari ("tidbits"... hey, if he's going to eat something, why not?), parmesan cheese, ketchup, bacon, bacon, chicken nuggets, french fries (started back yesterday), sugar cookies, fruit snacks (which we consider candy), bacon, lettuce, grapes, strawberries, bacon, taco meat, corn chips, potato chips, and bacon.

Schwan's sells precooked bacon that is expensive as hell, but very, very yummy, right from the fridge. That's right. Cold. Its good warmed, too, but the boys prefer it cold. Coronary in a bag. Woo-hoo!

This week, we're going to try carrots, some more veggies (peas would be nice to have back on the list, they're easy to grow), and I may try chicken again. We'll see.

Dinosaur Land Part 2

Two boys had a wonderfully good time!