adults with autism
Autism, cooking and inference
Like most parents of a child with a disability, I’m on way too many email lists. Sometimes I get the itch to get off a bunch of them. After all, my child isn’t a child, he’s a grown man. The kinds of things we worry about, the world is just beginning to worry about. Many times I’m convinced the answer to our problem isn’t going to be in that mountain. Just like when he was little, when he was 1 in 15,000, and not 1 in 88, my job is to ready the pilgrimage and go find Mohammed.
But then something flies across cyberspace and there it is. A solution.
This time the reward for sifting through the mountain of email was finding out about Penny Gill, and how she teaches adults with autism how to cook.
When I was younger, combing through some of the recipes my mother used, I would sometimes get frustrated with the instructions. A lot was inferred, little was written.
Inference is a difficult skill to master for people with autism.
Julia Child came along and helped with instructions for how to cook, but she and all those television chefs expect us to generalize what they do. Generalizing is also a difficult skill for people with autism to master.
Can you imagine writing the recipe that really has ALL the steps? Well, Penny Gill and her team have been doing just that. Check out the directions how to make Bumbleberry Squares.
They have a cooking class coming up in the middle of the day, May 7 at Central Market in Dallas (scroll down to find the registration instructions). That’s a rotten time for us in the Wolfe family.
But we ordered the cookbook, Coach in the Kitchen.
Stay tuned.
Dave’s FCS and the village
My friend, Lyndsay Knecht, gave a shout out on Facebook the other day to the auto shop that our family has patronized since we moved to the Denton area in 1993 — Dave’s Foreign Car Service. She was happy that Dave recognized although her engine light was on, there wasn’t really anything wrong with her car. And he didn’t charge her for the look-see to make sure.
Sam thinks Dave’s is great, too. “They tell me what’s happening,” Sam says. He knows what work they’ve done to his car and what’s coming up — like changing brake pads and the transmission fluid — so he can plan.
“They also let me know when it’s time to get new tires,” Sam says.
He doesn’t get the tires at Dave’s. He goes a few blocks down to Briscoe to get that taken care of.
Because I know most everyone at Dave’s (I wrote about one occasion where Dave talked me off the ledge not long after Mark died), and I know they keep an eye on others who get their referrals, I don’t feel like I have to backtrack to make sure nobody’s taking advantage of Sam as he takes care of his car.
Sometimes, when I think about why Sam wants to stay in Denton (believe me, the marginal quality of life in the Barnett Shale makes you think really hard about that — and I didn’t say “terrible quality of life” because that would be an affront to the people of the Eagle Ford), I know it’s all these small, reliable relationships he has in the community.
The restauranteurs near Albertsons know him, especially the guys at Luigi’s Pizza, where he’s been known to knock back a pie all by himself on a break from work. He schedules his own check-ups at the dentist and the doctor. Wayne Johnson takes good care of his diminishing hair line at Unique Barber Stylists. They know him DATCU credit union, too. And of course, there’s everyone at Born2Be.
Even for adults, it takes a village.
Track by Track documentary
Sam and I took in a collection of short films at the Thin Line Film Festival Sunday night, knowing that one of the short features was about a young man much like him.
Track by Track features the story of Kendall Collins, a young man with autism from a small town in Merced County, California. Kendall is a gifted artist and makes some money selling his drawings, even though he isn’t quite sure about handling money. He wants to go to college, because that’s the next step life says will help him be successful. But he still likes to swing on the swing in the side yard of his family’s home.
Sam said he liked the movie very much. The filmmaker, Anna Moot-Levin, allowed Kendall and his family to be fully human, even in such a short feature. I liked hearing the little chuckles in the audience when Kendall said something so plainly descriptive and honest that we in the audience couldn’t help but see ourselves more fully, too. For example, Kendall tells us he won’t wear a ball cap because it makes him look young. Instead, he wears a fedora because it makes him look more like a businessman.
I get that kind of conversation everyday here at home. It’s such a gift.
“Track by Track” was the first film about autism I’ve seen that really gets what our life is about. Unless enough people voted to make it the best short, it won’t show again in Denton. The next screening is in Missoula, Montana. I’m glad I got to catch that firefly when I had the chance.
Sam’s showmanship at Chisholm Challenge
Sam’s equitation ride at Chisholm Challenge
Sam’s trail ride at Chisholm Challenge
Autism’s top ten research advances
I’m grateful that within the first year of Sam’s diagnosis a friend of my parents copied journal articles for me and showed me how to read them. Kitty told me it was important to keep up — there was a lot of research being done and we needed to transfer that knowledge in how we worked with Sam.
We learned all kinds of interesting techniques (social stories and video modeling were among the best). We also learned to watch for signs of “readiness.” Kitty showed us that speech has a pattern of development and that Sam’s speech could well be following the pattern, just at a more deliberate, rather than dizzying, pace. When Sam looked ready to learn something, we gave him a leg up and tried to stretch that bit of readiness into other skills.
Autism Speaks helps me continue to stay abreast of the latest in research. (You can subscribe to their science digest here.) There is still a lot of work to be done for the young, but Autism Speaks and others are looking at the problems of under- and unemployment for young adults, too. That topic made their top 10 list this year, and that is good news. We have a choice. If we provide people with autism the right support, they can work and contribute. Or we can do nothing and pay a much, much higher price.
Or, what color is your parachute?
The awesome guide for job hunters. I read it when I was in my early 20s, it helped so much.
Earlier this year, I picked up a fresh edition. It could be with Michael or Paige, they are job hunters these days, too. That’s ok. Good books should get passed around. For Sam and me, I know the author, Dick Bolles, is online now with JobHuntersBible.
Sam and I are chipping away at his search. The resume needed work. He started it in Microsoft Word with an awful template. In the computer world, job-hunters need to list all that stuff they know, like programming language and operating systems. They can’t get by on a chronological summary of jobs and responsibilities.
Who knew?
In my world, that seems little like including “writes in complete sentences; knows AP style.”
But, at a recent workshop (thanks ARC of Northeast Texas!), I learned to be shameless about helping him. Texas has no services; no one else is going to help him. Tonight, we uploaded this handsome photo to his LinkedIn profile.
The resume should be uploaded some time this week.
If you’re on LinkedIn, please look for him. Connections, endorsements, feedback on the resume, all are welcome.
Maybe we can crowd-source a job for this terrific guy.
The bootstraps paradigm (and how Texas can’t get it up)
My sister, Chris, calls most Sunday nights. The routine started not long after Mark died. After a year or so, I told her she really could stop checking on me, but she calls anyways. We catch up and have a laugh or two. Last night she asked what’s new and after I waxed about my new shoes, I shared what I learned Saturday at a local workshop on supported employment put on by The Arc.
Chris didn’t miss a beat when I shared an eye-popping statistic with her about Texas and its Medicaid waiver programs for people with disabilities.
“Texas really means that pull-yourself-up-by-the-bootstraps thing, don’t they?”
Yes, they do.
Even if you have cerebral palsy.Even if you have a C1-C7 spinal injury. Sheesh. Even if you have no arms.
During the workshop, we heard from both the family and the supervisor of a man with autism. He has worked at the Austin Hilton downtown for nearly five years as a hotel steward. The family was incredibly inventive and determined. The hotel management is both smart and compassionate. The man is able to speak through a bit of sign language, and it has worked out fine. The hotel alluded to the story of another man on their staff who has autism (I know this story from the people at Marbridge), so this wasn’t a one-time thing for them, either.
The main thing I learned is that “social service” in Texas is DIY.
The mother of the hotel steward also is an advocate. She passed out a fact sheet that listed how many people in Texas were receiving employment services through the state’s Medicaid waiver programs. (Read the material in the link to understand the nuances. But suffice to say, if a person with a disability needs services, you can apply for help through one of these programs instead of checking into a state-supported living center.)
School officials and other advocates advised Mark and me to put Sam on the waiting list when we moved to Texas. They said it could well take 15-20 years for him to work his way up the list. If he were receiving services through CLASS, the program that would best fit his needs, he would join all the other people in Texas receiving employment services through this waiver program. And that number is …
2
You read that right. Two.
In a state of 25.6 million people, we have found the resources to help just two people with disabilities, people like Sam, with employment services. To be fair, there are more people getting employment services in the other waiver programs, but not very many — about 500 or so, in the entire state. I would bet that most, if not all, of them are working in sheltered workshops. In other words, still some distance from a full, independent life in the community.
The hotel steward’s mother described the same problem I had last year when I called DARS, another place to find help with employment services. DARS told her, too, that she had a better chance of helping her son find a job than they did. When she called the various employment support service groups, she confirmed what DARS had told her. Most of the vendors were out of business. To get started, her son’s ABA therapist became certified as a DARS provider so he could be the job coach as he learned to be a hotel steward.
Dear Texas: I reject the notion that this is benign neglect. What does it really cost the state to neglect this pool of workers? Sincerely Yours. P
The bottom line for our family is what I have suspected for some time. I have to go along with Sam, as I have several times already, in his job search. He stands a much better chance pulling up his bootstraps if I put mine on, too.
Documentary coming soon
Where are the heroes?