self-advocacy
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.
Writing Prompt #16, secret to coolness
The penultimate entry in Sam’s summer school journal:
If I could change my name, I would change it to Donald Duck because of my middle name and it sounds very cool. Donald Duck turns out to be a cartoon, but he is erasable! — July 22, 2002
From “How to Draw Guide,” learn to draw Donald Duck.
Overheard in the Wolfe House #181
Peggy: Hey, Sam, why don’t you help out here and dry some silverware? I don’t have room for one more piece in the rack.
Sam: Ok.
(sometime later) I don’t have to do all. I can just do enough that you have more room.
Peggy: Well, that’s true. But if you want to do the minimum, then just dry the big cooking and serving spoons. You’ll be done after just two or three pieces, then.
Sam: I’m afraid I’m just picking random pieces of silverware.
What Big Girls Are Made Of
Last weekend, my grandmother celebrated her 90th birthday. We sent her a pop-up card. My mother and dad were able to go back to Milwaukee for the fun.
My grandmother and grandfather spent a good part of their retirement crafting and selling their little creations at shows in shopping malls. I have quite a few things they made. My grandfather did a lot of small woodwork. I have a spice rack and most of the wooden toys he made, although they have seen a lot of wear and tear, especially a pull toy that Sam drug around the back patio as toddler in California until it fell apart.
A lesser toy, made of plastic, would have never withstood what Grandpa made.
This is unlike my father, who excels at creating furniture — I have seven or eight pieces that he built or rehabbed for us — he had enough of the small work crafting crowns and bridges and filling people’s teeth, I think. But I digress.
My grandmother made hundreds of counted cross-stitch pieces. I have some Christmas ornaments, and this little hanging piece that has always hung with on the key rack with the house and car keys. 
“Home is where you hang your heart.”
That’s my grandmother. Only recently, did I start really looking at what else grandma hangs on the key rack besides her heart.
Dang, grandma, you’ve got a set of boxing gloves, a set of shoulder pads, and a pair of nunchucks hanging there.
No wonder you’re living so long.
Happy Birthday, Grandma!
Explaining the Unexplainable
Throughout Sam’s life, the things he’s needed to learn had to be taught directly. You cannot imagine how important learning from context is until you are confronted with the inefficiency of hours and hours and hours of direct teaching.
As Sam has grown, he’s learned to generalize. He’s picked up more from context — but he had to be taught how to do that, too. Taught to imitate, taught to read context, taught to recognize idioms, taught to generalize.
I get tired just thinking about it.
Now, Sam is struggling mightily with a new problem. And I have to figure out how to explain what civil rights are. Do you know how often we toss out that phrase and we have no idea what it means?
That violates my civil rights.
Read him his rights.
They marched for civil rights.
Google it yourself, and see what a mess you get. Dear readers, can you help?
When a test is a barrier
Sam is taking two online classes this fall, one in word processing, another in spreadsheets. I’ve written before about the requirements he needs to “upgrade” from a certificate to an associate’s degree in computer technology. He’s just four classes away. It’s very exciting.
Both of this fall’s classes are in another department at the community college, and both required him to thoroughly read the syllabus and take a quiz over its contents. The students have to get a 100 on the quiz (they have unlimited attempts) before they can start the class. In a way, its a brilliant way to underscore the importance of reading and understanding the course requirements. In some of the larger lecture classes I’ve seen, professors spend the first day of class reading the syllabus to the students. And I’ve seen students drop once they realize the expectations.
Sam sailed through the syllabus quiz for one class but not the other. We’re not quite sure what has happened — we suspect, actually, there is a scoring problem — but it is yet to be resolved. I sat with him yesterday as he tried, again and again and again and again, to secure that perfect score. Before I helped him devise some evaluation strategies, he had no idea how to figure out what he was doing wrong.
It was like being thrown into the ocean with no clue where to swim to safety. You can imagine how wild and panicked a person’s thinking might get. And then, when you consider the true stakes how angry you could get.
He can’t get the keys to the rest of the online kingdom of the class until he does. An email to the professor about the problem has brought only the suggestion that he drop the class.
And that brings me to the point of this post — there is testing and then there are barriers.
When I was in junior high school, a gymnastics unit was added to our curriculum, probably in part because of the wildly popular Olga Korbut and the amazing things she did at the 1972 Olympics.
I saved those Seventeen magazine pages with a story and photo about her for ages.
Our instruction was pathetic. Our teacher couldn’t do any of the moves, and was continually recruiting a student to demonstrate a move to the others (with that student likely demonstrating that move to the teacher for the first time about 90 seconds earlier.)
Once “demonstrated,” we could practice on the equipment, serving as spotters for each other. At the end of the unit, we had to perform the different moves for our grade. We were scored on our ability to do the moves — nothing about the rhythm and composition of a routine, our body poise, or other criteria used to evaluate a gymnast.
The test was sequential and, theoretically, based on difficulty. Our teacher had no idea what was a hard move and what was easy, in my opinion. But, you couldn’t test for a B if you couldn’t do all the moves needed for a C.
Because I couldn’t go from a crouch on the beam to a standing position using only one leg — a “C” level move — I was not allowed to test for any other grade levels, even though I’d been working on all of them, as were my classmates, for six weeks.
Lots of girls didn’t get the grade they deserved for having taught themselves gymnastics.
That’s not instruction, and that’s not testing, so don’t make like its the bar exam.
Probably Not Probable Cause
Sam started asking me a lot of questions about when might a police officer pull you over, so many that I asked him whether he got pulled over recently.
He had. In Flower Mound.
As far as I can deduce, he got pulled over because the kind of car he was driving and his license plate closely matched someone the police were looking for.
And what was the probable cause, you ask?
Sam still has a frame around his license plate.
He wondered if his identity had been stolen and whether he should turn his car in. We had a long talk about first amendment rights, and private property rights, and who the police work for. I have no idea how much of that sank in.
But tomorrow, we’ll pull the frame off the plate.
Out Like a Lion
Sam got sidetracked with his plans to write an app for iPhone that restores some contact-sorting features he used to have on his Nokia.
Sam works on an old Dell a dear friend gave us, so any app work is going to happen on my Mac. He started amassing the resources he needed and then came to me to say the final step was this: we need to upgrade to Lion OS.
I consented to this upgrade without asking probing questions — completely, utterly stupid on my part.
Ever since I got my first Mac in 1988 and we made the leap to System 7, I’ve known it’s never simple. System upgrades are like taking off down the autobahn without tying down a bunch of your stuff in the back of the pick-up.
(My mind is in funny loop just now, imagining pick-up trucks on the autobahn racing past Benzes and Beemers.)
What flew out of the Wolfe family pick-up, you ask?
All my financial records (yes, Intuit let the weenies rule over Quicken). Sam’s amazing fixes for our family computer network — including a peripheral switch for our printer and our portable back-up drive. The entire Microsoft Office suite.
I sooooo knew better.
Major backtracking today.
But I’m proud of Sam. He downloaded Open Office. That’s fixed. And knowing Sam, we’ll be true contributors to the community.
Then, we pulled the Quicken data off portable back-up and he’s going to use Paige’s laptop to help me convert to iBank. That should be fixed tomorrow.
Right now, he’s writing the manufacturers of that peripheral equipment and asking for patches.
See Sam Go.
Overheard in the Wolfe House #115
Peggy: With all the traveling and time out of the house I’ve had, I’ve missed you.
Sam: Well, get used to it.
Expert Consultation Coming
I hope.
The ARC sent me a link to a website that is supposed provide self-help for adults with autism in the work force, called JobTIPS.
I asked Sam to take a look at it. Some of the pages are about interacting with the supervisor and how to keep a job, so it applies.
I think it looks good and the information is helpful, and clearly presented.
He said he’d take a look at it this weekend and let me know what he thought — I’m hoping to blog it.
Stay tuned.