adults with autism
Updating the Resume
Tonight, Sam took another step, without DARS, in his job hunt. He updated his resume.
It was a nice thing to add, that section of work experience, describing how he built gaming computers for clients who would use them to design games and applications, all part of his internship.
Gary Moore, with nonPareil Institute, told me last week that he got a call from Goodwill. They were looking for workers who could help them rebuild Dell Computers. It would be great work for Sam. But the workshop was in Oak Cliff.
Commuting to nonPareil was already a real reach. He can’t commute to South Dallas. Gary said he’d keep his ears and eyes open, and remember us and send us referrals when the work was north of the Mason-Dixon line.
Sam registered with the Texas Workforce Commission, and we’ve been checking job boards.
I hope this doesn’t get discouraging, but I fear it will.
Graduation
Sam got a 100 on his final final.
He has to do about 12 more hours to finish his internship.
He watched a video class on job-seeking two or three times last weekend, then wrote a paper about what he learned.
Another cliff is coming, right around the corner.
Making Pesto
We picked our first batch of basil from the garden tonight. My mother says the more you harvest, the more you get.
Thai basil (the purple-stalked type) volunteers in my garden now. That makes a nice, sharp pesto. But we picked the genovese basil tonight.
I asked Sam if he wanted to help make the pesto, since it’s about his favorite way to dress pasta. I said first, you have to pick all these leaves off the stems. I told him, “it’s kind of a job.”
He shot back, “I think that’s an easy job.”
And I remembered why the man can build computers over and over, and build sound sets for his old-school midi on Sibelius, and why other young adults like him can do the same exacting job over and over again
Daniel Shackleford, who’s about Sam’s age and moved from Krum to live at Marbridge in Austin, works at a hospital sterilizing medical equipment and packing it in bags. You can’t get bored and make mistakes at that kind of job. People would get sick. Daniel loves the exacting, repetitive nature of the work. The same kind of thing that would put me to sleep.
About 30 minutes later, Sam was ready to pulse the leaves with the rest of the ingredients: pine nuts, garlic, salt, olive oil. When I added the parmesean cheese and the butter, he complained about having to push the pulse button on the blender over and over.
“I thought this had an automatic pulse cycle,” he said.
Well, maybe not all the repetitive tasks ….
Slippery slope
One of my big fears, as I slowly let go and let Sam have his adult life, is that someone will come into his life and take advantage of him. Sam has pretty good defenses. But they aren’t impervious.
I learned today of a scenario I never considered — he needs more than a defense against a manipulating co-worker, a neighborhood con artist, or a really bad girlfriend, but a solid radar when someone close to him has crossed the line, too.
Even us without autism have a tough time going against someone who purportedly loves us and “wants the best for us,” but is an expert at justifications and rationalizations when it comes to taking care of their needs first.
Oh, new things to think about.
What You Know Best
Today there was lots of chatter today in the public radio and television sphere about autism. Diane Rehm hosted a segment in the second hour of her show, based in large part on the piece that’s running on public television right now.
As I was listening today, I thought a lot about how much the world has changed for youngsters with autism and their families in the past 20 years. One of the guests even helped bridge that gap in discussing her 16-year-old with autism a little.
Her son was diagnosed when he was 2. That seemed like such a luxury to me. Two years of anguish we would have been spared if we’d gotten a diagnosis that much sooner.
And as I was listening, I thought about how I’d made a pitch to her shows producers — let us talk about early intervention and behavioral treatments, let us show you that they work. Then, like most people might feel, I wasn’t surprised my pitch was passed by, possibly even ignored. Who am I to think I had something to offer this greater conversation, with these incredibly smart knowledgeable people on air right now? Every once in a while they bring up something I didn’t know — proof I’m an imposter.
Then, they’ll blow right by a topic — the upcoming cohort of adults with autism and how are we to support them in having full, productive lives — just open the door and say, “see, we’ve got a problem coming,” without articulating that problem in any sort of way.
I have an inkling of how to articulate that. That has been part of this blog from the beginning … just feeling my way through the darkness. We weren’t completely driven off the cliff, but it was close.
I’ll try to keep that in mind with the upcoming training I’m giving May 7 in Richardson at the Region 10 Education Service Center. I’m not an expert on what’s new and great for the young set. But I can tell you what you will need in the future — and how to make the best use of your precious time and resources on the way to the future.
And I hope the national conversation goes a little further — and real soon — about articulating what we need to do for this cohort.
High Fives for the Local Guys
Our sister paper, The Dallas Morning News, ran a nice piece about nonPareil today. (Yes, there’s a pay wall. We journalists have to make a living, too.)
When Sam saw the photo, he said, “when I see that, its just amazing.”
Today was his first day to be a trainer. He said it went well, but he has to train a lot more to be a good trainer.
Never medicated
Today’s installment is from a CNN blog entry on a review of studies, determining whether drugs — pretty much of any kind — help treat autism “core” symptoms.
And the verdict? They don’t.
Not secretin, not antipsychotic drugs, not serotonin-reuptake inhibitors (SRIs), not antidepressants, not stimulants or any other medication for hyperactivity.
We never agreed to any kind of medication for Sam, even when it was suggested when he was struggling with some anxiety during his first year of college. We dusted off some relaxation techniques and he worked through it. Life is hard enough for him and kids like him without trying to do it doped up.
The only thing that helps core symptoms (repetitive behaviors, communication and socialization) is applied behavioral therapy, and the earlier the better.
And I’m with Dr. Margaret Bauman — some of those repetitive behaviors have a purpose. Pay close attention before you try to extinguish or re-direct them. You may be sorry you tried.
A call to be
My former editor and good friend, Annette Fuller, wrote this installment for autism awareness in the Winston-Salem Journal.
That a father would start a company in order to serve his son is no surprise to me. The folks over at nonPareil did the same.
But I was surprised at one statistic he shared with Annette: those of us without disabilities have more than 150 people in our support network. People with disabilities have 10 — and that is the challenge to the rest of us. Are you part of that network for someone with a disability? Maybe you should be.
All month long
It’s April and it’s “autism awareness” month. We’re pretty “aware” of autism around the Wolfe house, but I will give my two cents on the many news stories that roll out this month.
I’m happy to see the story today in Parade magazine about the first wave of the autism baby boom turning 20. There are so few programs for adults.
Sam is fortunate to be interning at nonPareil. Gary Moore, one of the directors and founders, tells me there are plenty of kids like Sam out there — some have managed to earn a 4-year degree; Sam will be getting a certificate — and have trouble holding down a job.
Joanne Chen points out in today’s article that 20 percent of adults with autism are employed. Sixty percent are either under-employed or paid below-market wages.
That will be Sam when he graduates. He bags groceries at Albertsons; he could be building computers for someone. He loves it; and as far as I can tell, he’s doing a good job. And like other adults with autism, he doesn’t mind repetitive work.
Who will hire him?
P.S. Happy Birthday to the Family Room blog, sometimes better known as the Overheard in the Wolfe House blog, but still oneyear old today.
Man and car keys, part two
When Sam got home from work last night, he said he was a little embarrassed by what happened. I told him everyone has locked their car keys inside their car from time to time. I’ve done it more than once. It’s easy to do.
Then I told him that Ms. D (his speech therapist in high school) suggested a hide-a-key.
He looked at me quizzically for about ten seconds, and then a huge grin broke out on his face. “Did you put something on Facebook?”
(I was so excited that he connected all those dots.) I put something on the blog, I told him, and then linked to Facebook.
“People learn from our experiences, Sam,” I said.
“I know,” he said.
He was skeptical about the hide-a-key option — he is his father’s son, that’s for sure — but then agreed we needed to get more information.
We decided we’d go see a locksmith and determine whether hide-a-key is an option. We also are going to learn about calling a locksmith when you’re locked out and other options.
What I’ve learned from this is how much we take for granted our children’s ability to solve problems when we send them out into an ever-more-complicated world. When our children are born, we marvel at their first words, first steps — but nature does all that. We parents don’t do a thing.
After doing a story about moms with HIV, I recognized that what parents owe their kids is a set of survival skills. Those moms with HIV knew their time was limited and the best give they could give their kids is the ability to stand on their own two feet. Before then, I did things for my kids out of convenience or a lack of consciousness. I saw that I could be crippling them for the long term and changed my ways.
The kids, by the way, didn’t always like it. They saw friends whose parents “did more” for them. Mark and I often got grief for that. (Michael thanked me last year, after helping several friends learn to do laundry. Big-time delayed gratification on my part, there.)
With Sam, I worry whether he has enough “generalized” problem-solving ability. I called my parents and asked for help those first years out of the house, and in my own apartment. Once they talked me through how to handle a simple repair or negotiations with a business, though, I could apply what I learned in other situations. I see Michael doing that now — in his second year out of the house and looking forward to his first year in an apartment.
Sam is doing that to a great degree, yet I still have this nagging sense that life can still throw him lots more curve balls than he’s prepared for.