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. 

Moved.

So I moved the blog. I really wasn't talking about speech delays anymore, was I? It's all autism all the time, baybee.

Apple, yes, plum, orange

The latest echololia. It took me a bit to realize he was saying "plum" and not "mom." So we'd have these conversations:

K: Apple
Me: You want an apple?
K: Yes. Mom.
Me: Good talking! I'll go get you an apple
K: Orange.

Heh, It took me a bit to realize that they were just a list of words, too. He's got a hand motion that goes with it, like he's packing things. It goes with his absolute love of the letter P and of the Fun With Phonics DVD, from what I can tell. About halfway through, when they pack for the picnic. You'll see what I mean.

And also related to his love of the letter P, he spontaneously picked up Hop on Pop and started reading the words hop and pop. He won't let me open the book. He insists on carrying the book over and trying to prop it up on a computer monitor, where it falls over, but he sounds out the words on it.

Autism conference

It was good. I'm glad I went.

Yesterday's keynote speaker has autism himself and wrote tons of books on the subject. He was an amazing presenter and really engaged the audience. I had to catch the bus, or I'd have bought Autism for Dummies and Beyond the Wall for him to autograph. I'll probably buy them from Amazon later, but I'm still digesting 1001 Great Ideas right now.

Today's speakers included a morning panel with the developmental pediatrician who was part of the team that diagnosed my son and two other professionals on the state autism task force. The lunch session was presented by someone who wrote a book on career paths for people with Aspergers. The career info is a little too early yet, and the diagnostic info a bit too late. And when they talked about HCBS waiver services for the state, it was a bit frustrating, since I know those services aren't funded this year. Lunch conversation was really engaging, and I wish we'd had more time to just talk.

The last speakers were two of the three board of director members of ASAN. They did a good job presenting, even though the whole conference was running late from lunch, and they had some very valid points, but they also ran into the problem of coming off as a little adversarial to parents when describing their anti-cure stance. They were in one breath saying "don't cure us," and in another saying, "we need appropriate treatment." And that's confusing for parents to hear, especially if they confuse the terms "treatment" and "cure."

It's also not evil to wish you could make autism go away for your child. It's a healthy parental wish that you could make your child's life easier, especially if you're watching them get bullied in school. But, as I've said before, it's just not realistic to think that will ever happen.

I think they were just trying to say that parents could spend a year teaching their child to tie their shoes, or they could buy velcro shoes and spend that year teaching them social skills, and we all have to pick our battles and set realistic goals. Most of us would probably agree on that. Unless we're Jenny McCarthy.

I, once again, had to run to go catch the bus, so I missed the closing statements, but I'm fairly sure nobody ended up pulling out a knife. ;-)

A few good points that they brought up in the last panel:

• By the time your kid reaches high school, they should be participating in IEP meetings, not just sitting in them. They need to learn how to self advocate.
• Colleges need social and executive skills classes, not just accommodations for academic issues like quiet rooms for tests.
• People need to think about adults with autism, not just children.
• Give alternate IQ tests that don't focus on verbal communication.
  

I wrote down the name for an IQ test, but I'm lazy and not sitting next to my notes. I'll have to transcribe it before I lose the ability to decipher my handwriting. I'd like to ask them about it at my son's IEP meeting, since IQ monitoring was one of his recommendations.

Teaching a nonverbal kid to read

Mr K is an interesting boy. Although he's not particularly verbal, he is very interested in letters and numbers.

He can count to at least twenty. I'm sure he can count higher, but we haven't tested him on this. He knows all his letters, and he knows the sounds they make. He can even sign them all. If you show him the alphabet, he gets excited and points and labels all the letters for you.

So the next step, as suggested by his preschool teacher, is to get him to read. If he can read and articulate the letter sounds, eventually he can articulate sounds in verbal speech. It's backwards from the way most kids go about it, but you have to play to a kid's strengths.

Measles Over Autism

“Most parents I know will take measles over autism,” said J. B. Handley, co-founder of Generation Rescue, a parent-led organization that contends that autism is a treatable condition caused by vaccines.

- From a NYT article showing a rise in Measles cases, including at least two deaths.

Um, no. Not me. Even assuming for a moment that the MMR vaccine causes autism. It doesn't. There's no credible evidence at all that it does, and the rate of diagnosis has increased even as the rate of vaccination has decreased. But even assuming it were a possibility - I'd rather have a live child with a disability than a dead child I could have saved.

Just like some of the so called "treatments" out there. I'd rather have a live child with a disability than a dead child with a cure.

Things could be worse

That's my mantra lately. My boy's not doing a lot of talking, but he is pointing at things to direct my attention to it. He's also saying a lot of words that aren't expressing immediate needs.

Point at picture of kid swimming on the computer screen. "Fish!"
Point at box labeled for 4T clothing, "T! 4! T! 4!"

Yeah, I'd like it if he were talking, but I feel like we're doing better connecting, and that's progress.

Cure

Went to an interesting talk today from someone with Aspergers. He's old enough to have lived through the bad old days of a "childhood schizophrenia" diagnosis and shock therapy(!). Yeah.

Anyway, he was talking a little about how he was very "anti-cure." I've run into this a lot among adults on the spectrum. I think part of it is his childhood and the particular attempts to cure that were made on him. Um, yeah. I'd be anti that sort of cure, too.

And I think a lot of it is the difference in what people mean when they say, "cure." I say "treatment," because that's what I mean, but I know people who say "cure" and mean the same thing. My goal is to raise an adult capable of taking care of himself, earning wages, and finding happiness.

Even if they found some sort of magic pill tomorrow, chances are that it wouldn't actually eliminate all traces of organic brain difference between my son and typically developing peers. That just isn't realistic.

If there is some sort of "cure," it will likely be in either genetic avoidance or environmental trigger avoidance. Sort of like Down Syndrome or Phenylketonuria. People can choose to avoid having a child with Down Syndrome. (I have my doubts about that 90% statistic and it's applicability in the US) People can avoid the mental retardation associated with PKU through special diet beginning in infancy. Knowing these things hasn't done squat to help adults with either, and it never will.

So basically, a cure would most likely be too late to help any of our kids. And that isn't a death sentence or the end of the world. It just is.

Woo hoo! There was no mention of the dreaded McCarthy, so I did not have to demonstrate my crazy rapid exiting skills. There were snacks of wheat and dairy and parents talking about whipping the school district into shape. Life was good.

Autism Pie

Well, we don't have to sit around and wonder anymore, and I can stop telling people, "I suspect autism." The university team agreed with me, and since they have better degrees for that sort of thing, they're not guessing at symptoms based on crap they read on the Internet.
It's autism. Their impression was autism disorder and general developmental delay. The first I expected but didn't want to hear, and the second is making me feel a little punched in the stomach. I suppose you never really want your suspicions confirmed on this sort of thing (unless you're a total whackjob). And really, he's not meeting a lot of milestones at this point, so of course he has a general developmental delay.
I still love my son. He's very mellow. He doesn't (knock on a giant block of wood) have behaviors that are super problematic. He doesn't bang his head on hard things or hit people. He shows affection. He's generally happy. He's pleased when he gets something right, and you can tell from the look on his face that he knows he's done well when he remembers to use his words.
Sadly, "his words" are still single words and sporadic. We've done fairly well showing him signs to go with words, because he doesn't pronounce most words well enough to understand, and the signs really help out. The team would like to see us work more on functional communication, so he can better ask for his needs and wants.
He loves numbers. He can count to at least twenty, although I bet he could go higher. He can sign to twenty. He can recognize the numbers if he just sees random numbers anywhere (Motel 8 ad on TV, F keys on keyboards, Uno deck). I think I might add some more visual prompts to his daily routine to see if we can get him to recognize more words. And I'll see about adding letters. Yeah, I know that letters don't count as "functional communication," but if he's more interested in counting and lists, I want to play to his strengths. I think learning begets learning.

Vaccines Don't Cause Autism, ABC!

So I watched the premier of a new show I thought might be good and end up being all pissed off instead. The show, Eli Stone, showed a jury awarding a huge cash payment to the mother of an autistic child over "mercurium" in a flu vaccine. They had a disclaimer at the end, but damage was already don.

Please, people. We don't need anymore damn "vaccines cause autism" scares. It's simply not true. The mercury used as a preservative leaves the body too quickly to do the heavy metal damage you'd see from eating fish or being exposed to environmental toxins. And most vaccines have phased it out due to bad press, anyway.

There are enough people scared of vaccines as it is. I'd rather have my kids avoid exposure to pertussis, TYVM. I've had it. It wasn't a harmless and comically loud cough. It was a struggle to breath with the occasional vomit. Yay.

And then when we get past the stupid vaccines and autism faux link, we find a kid who apparently neatly stacks thousands of toy blocks. His mom must own stock in the wooden toy block factory. Oh, and he never melts down and knocks them over. He just stacks the blocks. I know that if my son likes blocks? I'll buy him thousands of them instead of letting him play with 30-40.

It was just weird.

And the show? Was trying to be funny and really failing.

Eli Stone? You suck.

It's a Date

April 17th. We're getting King's long evaluation done. Note that we first called for an appointment in October. But this? This is the short waiting list. The other hospital that does autism evaluations has a year long wait before they call you to schedule an appointment.

A friend of mine just got punched in the gut with an autism surprise herself. Add this to a long list of parents I know with kids on the spectrum, and it really just makes me ask WTF?

Harry Potter Fans Start Early

Ok, so we've got a massive wall of bookshelves that are piled with books (and other crap that gets tossed up out of kid reach, but that's beside the point). They go from floor to ceiling and are a toddler temptation.

We put up a massively long toddler gate to block them off, but the gate didn't completely fit well, so there was a loop in the gate on one side that King would tend to fill with any object he could toss over the edge. It was a pain to clean, and you never knew what garbage you'd find when you did.

My husband decided that King was old enough not to take the books off the shelf all the time (ha!) and took the gate off. The living room is cleaner without the crap pile, but King, of course, loves taking the books off the shelf.

Apparently he's a big Harry Potter fan, because the other day he just took the Harry Potter books down. He removed the dust cover on each one and then lined them up on the couch.

If he does it again, I'm taking a picture.

The A Word

Yeah. That one. The one that starts with a and ends with utism.

When we went to the pediatrician to get the required paperwork for him to start preschool, King bombed the screening they give for autism. That doesn't mean he has it, but it does mean he should be tested.

The more I read, the more I'm inclined to think there's cause for concern. He doesn't have every single symptom, of course, but neither do kids with diagnosed cases of autism. So, yeah.

I've been mulling it over and trying to figure out how I should feel about the whole thing.

Ok, here's our areas of concern:

Eye contact. He makes eye contact sometimes, but only if it's something he's really engaged in. When he's on, he's on, but he spends a lot of time looking away and acting like you and the rest of the world doesn't exist.

Speech. Dude is almost three and we still don't have any two word sentences. Or that many one word sentences. He still asks for water by handing us a cup.

Play. Most of the time he takes a toy, like a doll or an animal, and he bounces it up and down. I've never seen him pretend like one doll is talking to another or take the dolls and put them in the house.

Other kids. He likes to chase after other kids, but he doesn't play cooperatively. No tea parties, no balls back and forth, etc. I don't know how much of this is developmentally atypical, but other kids his age seem to be down with the whole cooperative play thing.

Yeah. I think we've got some big concerns. The waiting list for screening can be up to six months long, so it may be a while before I find out anything more.