Tuesday, March 31, 2009

Anywhere else, they'd have laughed

We spent Saturday at the Autism Society of NC's annual conference, and it was well worth the 1.5 hour drive each way. I could make a never ending post about every tiny aspect of the conference, but that would be boring and time consuming, and anyway if you'd wanted to know EVERY tiny detail, I'm sure you'd have gone yourself. (Assuming you live in NC, anyway.) Anyway, to spare you all the details, I'm going to stick to the highlights.

Friday nights session was the latest legislation related stuff. a lot of it went over my head, but some of what I got from the hour:

  • Autism funding in NC was NOT cut.
  • There may be more tier 1 CAP slots available, though I think Jaymes will have grey hair by the time he gets his CAP. I was a little confused on what the difference is between tier 1 and 2, I -think- tier 2 is adult/residential care related?
  • Current projects include Christopher's Law, which is an attempt to get insurance companies to pay for autism related therapies and interventions and ABLE accounts, which are similar to college savings accounts, but would instead pay for lifetime care or special equipment needs for people with disabilities. I'm sure there was more, but I don't have my notes in front of me at the moment and am too lazy to go get them.
We left Chapel Hill that night around 10:30, got into Greensboro around 11:30, and decided to stop and have dinner because it's a rare chance for us to eat at a restaurant without kids (we have found the BEST babysitter, yay, and she does late night. Hooray!) so had dinner at Ruby Tuesdays. Unfortunely, halfway through the meal we discovered we weren't that hungry, so most of it came home in a to-go box. The salad bar was amazing, yum yum yum. We had cheese fries as an appetizer, and then I got this fried chicken breast covered in BBQ sauce, cheddar cheese, and tomatoes. They even pre-sliced it, which is great because I was barely awake at this point. We had a really nice waiter, and had a good time. Got home around 12:15, babysitter was still alive, and the kids were both awake. I'm surprised Jaymes refused to sleep, that's just not like him. I guess he felt he couldn't sleep knowing there was a pretty girl in the house.

We left Saturday morning at 7am, and boy were we tired. They had muffins and juice and stuff at the hotel, very tasty. First part of the day was the opening comments and award ceremony. This part was my favorite, especially the winners of the Christmas card contest. The one kid who won was an older teen (17 maybe? I'm a bad judge of age), and he walked up carrying a towel thrown over his shoulder. Reminded me of Jaymes, actually, except Waaaaaaaay bigger. He was very well spoken, but it was very obvious that he was autistic, and as he went into an explanation of his card design, it crossed my mind that anywhere else, this kid's speech would have brought snickers and mocking. Here, it brought loud applause and broad smiles.

His card was a group of super heroes, named something like "imagifriends" or similar- I can't remember or find it on their website. He took the microphone like he had just won an Emmy, and explained all about his reasons for creating a band of superheroes who treat each other and everyone else with respect, ending with much emotion and gusto by nearly shouting "and NO one ever deserves to be made fun or or treated badly because they're autistic!" Brought tears to everyone's eyes, and he got a standing ovation that lasted and lasted and lasted. I wish I'd thought to take video. It was really beautiful, it made a lasting impression in my mind, and I hope Jaymes grows up to be just like that kid, just as smart, and well spoken and capable. If that is my son's future, then I am hopeful, even happy.

The best of all the presentations was probably the first one, which was given by Geraldine Dawson, who works with Autism Speaks. Now, I've read a lot of online literature against Autism Speaks, but based on what I heard in this session, they're hardly the demon so many people make them out to be, and though they may not represent autistic individuals as well as they could, they are doing a lot of good. The session was "A vision for autism research in the future" and it was really, really interesting. I learned quite a lot. I'm going to share some of my notes from this session (yes, I'm about to go get up, find them, sit back down, and type them out. Go me!). Can't promise that they'll be in any order, or that some of them are any more than interesting facts...

  • Autism's average cost to society is $35 Billion a year (Wow)
  • People with ASD's tend to have more unmet needs than those with more widely understood conditions like childhood cancers, Downs Syndrome..etc simply because unless you've got the IN with someone with Autism, you just don't know what's needed. (I believe it)
Some suggested causes of Autism (interesting, I thought)

  • Genetics, specifically gene deletion in important areas
  • Prenatal exposures (Like my beging on Paxil throughout my pregnancy with Jaymes)
  • Maternal infection during pregnancy, or probelsm between the mother and baby's antibodies
  • Paternal age (I'm not sure about that one, I know we were both young when Jaymes was concieved...)
  • Abnormalities in the synapses (I have no idea, even though she explained it)
  • An excess of something called Glutamate, which causes increased excitation. Somebody someplace is doing a clinical trial of a drug that limits Glutamate, no results known yet.
  • Early detection can be done as young as 6-12 months (Yup, Jaymes was different as a young baby, we knew by the time he was a year old)
  • Early detection= early treatment= better outcome (duh, you all know that, why'd I type it out?)
  • Testing that can be done include MCHAT @ 18-24 mos, ADOS @ 12-24 mos (Why did they use the ADOS on Jaymes at Duke when he was 4 then? Hmm.)
  • The American Academy of Pediatrics is now recommending autism spectrum screening for every child at 18 months of age. If you're trying to get a diagnosis and your doc is hesitant, remind them of this reccomendation!
  • There is some link between kids with big heads and autism (Jaymes has a huge head, LOL, and so do most of the autistic kiddos I know. More room for brains, that's my theory. He's got a huge head because it's packed full 'o brains.)
  • Though early detection is key, kids diagnosed even after age 6 can and should be treated, and have just as good a chance for a positive outcome.
  • Learned some cool brain parts: Fusiform Gyrus is the part of the brain that controls facial perception, prefrontal cortex is the part that controls social cognitiion. I can't read my notes on the other parts, bad bad handwriting!
  • Ideally, kids with Autism should have 25 hours a week of structed therapeutic intervention (therapies, home ABA program, or a therapeutic school setting)
  • Autism Speaks is working to develop a standard of care for Autism, in an effort to help pediatricians and other professionals understand how to treat the disorder.
The other sessions were good, but not really very useful for me, in relation to Jaymes. Two were by Valerie Pardiz (author of Elijah's Cup). The first was pretty much just talking about her life, and her son's life. It was interesting, but it didn't really help me that much. Apparently she also has Aspergers, and refers to it every third sentence, but I dunno... You've got a PhD, you're speaking in front of tons of people on a regular basis... You're doing pretty well. Stop harping on your own issue and stick to telling us about your son. Her second session was about helping our kids become self advocates. It was pretty good. I hope Jaymes will be able to advocate for his own needs one day.

She showed some videos of her son, who is now 18 and has become a standup comic. He is pretty funny, but some of it kinda turned me off. i know the theory is that it's ok to make fun of your own disability, but some of the things he was joking about had a disturbing, sad truth to them.

Here is one that she played for us.

Oh, the other session was by a DAN! doctor, and it made so little sense I could not even concentrate on her. It was so deep into specific genetic stuff and cells and so utterly scientific, no one was really paying much attention. I wish she'd have dumbed it down a little for those of us who aren't rocket scientists! I was impressed though, even a DAN! doc admitted that vaccines do not cause autism, and that you cannot cure autism but you can treat it. Nothing was said about vitamins, supplements, and shoving gallons of weird stuff down your kid's throats. GFCF diet was mentioned, as well as hyperbaric treatment. What I understood of it, I enjoyed though.

They had an exhibitor area, with stuff for sale, tons of free pens (I love free pens!) and reps from a lot of the chapters of the autism society. I was very disappointed to see that no one came form Forsyth County, that's just sheer laziness. We should have been represented. I met one of the directors of the ABC school in Winston, she gave me lots of good info, and tried to talk me into a program that is "only $1000 for 6 weeks!" I'll be applying for scholarships there though for next summer and for some parent training.

Got Jaymes and Sierra a neat game called Out of my Head. You pick a card, and whatever is on it, you find the item inside the stuffed head. It's full of plastic rats, worms, tooth, screw, spaceman, ball, spider...etc. The kids love it. Jaymes is a horrible cheater, but he takes turns and plays!

Got lots of information, if anyone wants copies of stuff, email me and I'll send you what I have. Tons of nice pens, yay pens. Got a CD demo of a computer game for kids with autism too, and entered lots of raffles for stuff. I'm sure Jaymes hopes we do not win the 10 free hyperbaric treatments, LOL.

All in all, tons of fun. Met someone from ECAC, who gave me some excellent tips for dealing with the school, my various rights, etc. Good stuff. I wish I'd met her before the last IEP. IEP rant coming in the next day or so, by the way.

We'll definitely be going next year, lots of fun, met lots of really neat people, had some good food.

No comments: