The truth, it burns...

The Onion has a good article showing responses to science arguments from a vaccine-denier's perspective. 

Autism in babies

So this is hardly conclusive proof or anything, but it struck me as I was going through some old videos - my son really never was good at that whole eye contact thing. Here's a video I made a while back to show how to fold cloth diapers. I shot two takes. The half a second where he glances in my direction is the most eye contact he makes in either take, and I'm not sure he ever actually looked at my face. 

It could be typical behavior for the age. I'd certainly have told you it was back when I shot the video. But now - not so sure.   

AAC in Your Pocket

Remember how I was wondering why nobody made a simple software solution for AAC using modern, cheap hardware like netbooks? Well, it seems someone has. Proloquo2Go is a $150 software app for iPhone or iPod Touch w speakers.

This is awesome. It won't help my son - he's still a bit wee for something that sophisticated (and easily broken,) but it looks awesome for when he's a bit older if he still needs AAC.

Oh, and it looks like there's another one, iConverse, but it's slightly less sophisticated. It's also considerably cheaper.

Feh

So I'm talking with someone who has children about to enter college soon. She earns about twice what I do, since they have a two income family at this point. She's complaining that the selective admissions schools her kids want to attend will mean she'll have to come up with an extra $25k a year to pay for them.

I sympathized, since that's about what it would take to give my kid the recommended level of intensive therapy he needs. She then said, "Yeah, but my expenses are not optional." Yes, because paying for Princeton is not optional. Obviously. And supports for the cognitively disabled are just nice perks. Ugh, people suck sometimes, and they don't even realize why.

Stroller

Just got back from a weekend trip, and the boy spent the entire time in the jog stroller. Eventually we'll probably get a special needs umbrella stroller just to get the higher weight limit, but for now, our jog stroller does the job. It's a little less maneuverable in tight spaces, and it doesn't fold down as small, but it makes up for it in comfort.

King didn't want to leave his stroller, even to eat at restaurants, even to play with toys. Several people assumed he was in a wheelchair, which provided a few teaching moments about autism. But he was more than content to remain there and protested whenever we tried to unbuckle him anywhere but the hotel room.

College Fund

The estimate was a little higher for the AAC device, since it includes the software, strap, and other stuff to make it actually work. We can absorb it, but it will mean we may have to sacrifice other things along the way, and right now I'm still waiting for my job contract for the next year. I don't think I'll be out of a job -- I just don't think I'll be getting a raise. If I can convince grocery stores and utility companies not to raise their rates for the whole year, I'll be golden. 

My husband mentioned the AAC device to his dad, and my FIL said that if insurance and the school district don't want to pay for it, he will. He said they'd been stashing away a college fund for the kids. 

If he learns how to functionally communicate and is able to handle it, I think we'll figure out how to pay for college when we get there. 

AAC

So the university got back to us with their recommendations on an AAC device. 

They recommended the SpringBoard Lite.

Now we get to figure out how to pay for it. They're going to bill our insurance and take the rest of our Medicaid, and then I think we'll discuss things with the school district.  

You know, I really wish I could just buy software and laptop. Both are cheap enough that it ought to be possible.  In one of my fantasy careers, maybe that's what I'll do - make software mods for laptops. You could take old tablets and convert them to AAC devices running modified Linux. 

Why Wolfram Alpha Sucks

Wolfram Alpha is this new computational search engine that is supposed to be finding answers to search queries by searching through a curated list of sites. Rather than showing you sources, it shows you the results. Pretty cool, right?

 A search on autism?

autism | (psychiatry) an abnormal absorption with the self; marked by communication disorders and short attention span and inability to treat others as people

Yeah, thanks. That's ever so helpful. I'm sure that's exactly what people searching for autism want to see. Add vaccines to the mix, and it doesn't know what to do with your search query at all. 

If I want to find out why the sky is blue or how far Mercury is from Venus, it's all over those answers, though. 

| current distances | light time Mercury to Venus | 0.406 AU | 202.6 s

Maybe in the future it will be the awesome research tool they claim it will be. 

Jenny McCarthy Is Full of Poop

Warning. This is a gross post. 

Ok, so I read Jenny McCarthy's blog over on Oprah's site, and it's pretty much as vapid as I thought it would be. A recent post illustrates this about as well as anything. She waxes poetic about poop. About how she regularly has her son's analyzed, I guess so she can have an OCD meltdown about all the bugs that are in everyone's poop.

Seriously? That's what poop is. That's why you wash your hands after you come in contact with it. It's full of bacteria. That's normal. It's true of everyone's poop. And if it's not, you're in for a world of hurt, 'cause you've killed off things that help you digest. Sheesh! 

I guess that's a big thing in the woo-sphere now, though, to be convinced that some product is clearing your poop of all the hordes of hidden parasites. Someone even once linked me to some forum where they actually *gag* examined the stuff with a pokey stick to see what all imaginary critters from the black lagoon they were killing off. 

Anyway, she was shocked to find out her poop was just as full of yeast and bacteria as her son's. Gosh golly gee, it couldn't have anything to do with that being normal, ordinary, everyday poop, now could it? It must mean she should immediately consume evil big pharma products that kill yeast. (You see, big pharma is ok when they kill naturally occurring internal flora, and it's ok when it paralyzes part of your face to hide wrinkles from all the chain smoking you used to do, but it's not ok if it saves the lives of children from measles. )  Everyone clear?

Anyway, who does this? Seriously. I've heard about taking a crap all over the blog, but she's doing just that literally. I bet her tweets about crapping are just as entertaining. That woman craps pure yeast and bacteria infested gold. Speaking of gold, this post on it was hilarious. 

Let's finish up with a song, shall we?

Legos by the Pound

So there comes a time in many a young autistic boy's life, when other toys cease to amuse him. He must move on to Legos. I swear, I have friends who should just buy stock in the company. Their kids can quote kits and prices and only want one thing for Christmas. 

Anyway, King's been playing with Legos, and Princess Pea digs them just as much, so we've decided to put the Mr Potato Head kits, wooden blocks, peg puzzles, and other toys that aren't as fascinating in the closet for a while. Maybe they'll come back. Maybe they'll go to the preschool. We'll see. 

Turns out they sell Legos by the pound on eBay, so there's a nice bulk package heading our way. I hope the parts don't all suck. His OT was surprised he was using regular Legos at this point, but he's able to handle them pretty well. So fine motor skill builder, yay. May very few of them end up under our feet. 

Now this looks promising... an educational summer

I hadn't seen this before. Mrs Riley's PageBuilder.

Instant visual support builder. Very helpful. Reasonably priced, too. I tried it out on preview mode last night, and it looks like it would do exactly what I wanted it to do. Except change from squares to business card templates. Sigh. 

My husband is now insisting he can do the same thing for free using Avery templates and clip art. He's stuck on the templates because he wants to use up the 23432432432 stacks of business card paper we have but haven't yet used. 

But he's digging the idea of a visual weekly planner for the summer, so if he wants to do the work and is willing to use the system, he's welcome to do it however he'd like.  Plus I secretly suspect it will make him more organized to have a visual schedule with things like back yard play and craft time written into the day. 

We found a magnetic white board at Target for easily a quarter of the cost of one over at Office Depot, and the plan is to use magnetic business card backs we also have on hand to tack the items to the schedule.  I'll resist the urge to smuggle sarcastic lolcat captions into his day.   

Funding? What funding?

My state decided it was ok to take all the small grants from families and increase the years long waiting list for medicaid waivers. And then they cut public school funding.  Awesome. You see, it's a recession, and everyone has to make a few sacrifices right? Because being on a waiting list for several years wasn't apparently a sacrifice and everyone unable to get waivers got the small grants for wasteful government spending on partial payments for things like AAC devices and wheelchairs. Who needs those?  

Oh, and that was the one that had matching federal funding. So everything they take away has bigger impact than just the funding they saved. Sweet. It's a twofer. 

I'm just a little pissed at this right now. I was hoping when I originally heard the news that they'd shifted funding from the grants and were instead using it to reduce the waiting list. It would make financial sense, since the matching funds would increase the impact of every dollar they spent. But no, it was apparently just dump on the disabled week. 

 

Jay Turnbull

Jay Turnbull died in January at age 41 of an unexpected heart attack. That part is not as important to the story as his life is. You see, Jay faced multiple disabilities that would ordinarily meant that his life was spent mainly inside some sort of sheltered group home or cared for full-time by a family member. That's not what happened. 

Jay worked at a real job and earned actual income, not the pretend salary of group homes. He lived in his own home. He had friends. He had regularly scheduled activities and a social life. He was part of the community, not someone shut up somewhere behind closed doors. 

Jay was autistic and intellectually impaired. He had bipolar disorder. He'd been kicked out of a group home for behavior issues like biting, hitting, and choking. He was functionally illiterate and couldn't drive. Jay's mother was constantly told that he was "the most disabled" student in the class and reminded that her expectations were too high. 

I saw a presentation last week by Jay Turnbull's mother, Dr Ann Turnbull, and I'm still processing everything. I can't type without tearing up a bit. I'm still crying just a bit.  Forgive me if I get some of the details wrong. I'm going from memory. 

Basically, he grew up with some good and some bad educational experiences, and once he aged out of the school system, they put him in a group home. This was 20 years ago, and that was just what you did at the time. Well, it was a nightmare. He had horrible behavior problems there and they kicked him out of the home. They recommended a more restrictive setting, which was the alternative at the time. 

When his sister visited him in the hone, she was furious. She told her mom, "I don't want to live there. You don't want to live there. Why is it ok for Jay?" She also found out they were waking him up by squirting him in the face with a water gun in the morning. Does that sound like dignity and respect?

So they decided they'd work out a way to do better. She found a job for him at KU. She felt guilty about it at first, since she was using her position to find him a job, but then she realized lots of people find jobs through friends and family. He sorted recycling, delivered mail, did clerical work, and did other things they'd have to pay someone to do anyway. It was a real job. He needed a job coach, but he was able to do everything. 

She hired someone to take him to the gym to exercise, and from there it ended up working out that he'd regularly attend frat parties on campus. Yes, frat parties. His behavior issues were totally not issues when it comes to frat boys. Really, what's a little hitting and biting and inappropriate farting in a frat house? Do they care if you're flapping your hands or singing really loud to the music? They adopted him as an unofficial member, and after that he was given honorary membership to a different frat house in town. 

It was his frat brothers that ended up proposing the solution that got him a home. With the help of his parents (who could manage money and plan budgets, something he could not do) he moved into his own home. Several frat brothers became roommates. In exchange for free housing (and salary for his primary assistant,) they helped him with daily living issues like cooking and cleaning, setting up his budget, scheduling activities, and buying clothes. And they genuinely liked his company. 

That's something she stressed over and over. He was surrounded by people who genuinely liked him. Some roommates would come and go as they graduated and moved, but many stayed. He most recently had the same roommates for seven years. 

Meanwhile, he had time for activities, such as music therapy, speech therapy, yoga, and weekly massage, paid for with his medicare waiver. He rode taxis and then later the bus to work and around town. He regularly went places. He found fierce advocates in many places, such as the owner of a local restaurant who trained her staff on how to treat him. She told them that he'd always want to be seated in the same spot, so that's where they should seat him. That he'd always want spaghetti and meatballs and couldn't read the menu, but that didn't matter. They should always give him a menu anyway and take his order, just like they would any other customer.  

So one morning, Jay got up and told his roommates that he'd like waffles for breakfast. He went to the bathroom to get ready for work, and he died. The university published a statement mourning the loss of their longtime employee, not the part time worker who needed a job coach.

That, my friends, is dignity, respect, and inclusion. And exactly what we all want for our kids, no matter their level of ability. And that's what neurodiversity advocates are trying to say when they defend themselves against accusations that the movement doesn't include those with the lowest functioning level.