adults with autism
Extreme banking with Sam in the international marketplace, or how I got another 100 gray hairs in the last 24 hours
Last night I sat down to the computer to do a little scanning and the first document that opened up told me that Sam had scanned the front and back of his bank card and driver’s license for Avangate — something akin to PayPal in Canada.
I haven’t scrambled so hard in a 24-hour period since he left his wallet on a chair in the waiting room at the dentist’s office. That day, someone picked it up and bought gas in Gainesville, about 30 miles away, before we could cancel the card. And Sam had realized the error within the hour.
We did all the usual things — fraud alerts, card changes, getting the driver’s license re-issued.
This time, I wasn’t so concerned about Sam having made an error, but that he had left himself too vulnerable.
His intentions were spot on. He upgraded us to OS Lion. We needed Tuxera NTS, a file system that lets the Mac get backed up on an external drive. And probably some other amazing tasks that Sam knows that I don’t.
But Tuxera is in Finland. So he had to pay through Avangate. The bank blocked it. That’s an international transaction. Avangate sent him an email with several ways to get the payment through. He chose the offline pay and cajoled the bank into authorizing it. Everything seems to have gone through alright.
But, Hey, Martha. I tell ya. If that information got in the wrong hands, someone could drain his bank account.
I went to the bank and ordered him a new bank card. He applied for a credit card. As the good guys at DATCU said, better he shops with the bank’s money than his own.
I agree. He manages his money well enough that I know it will be paid off at the end of each month.
Then I called a good friend who I know has LifeLock. She explained it. I persuaded Sam to sign up.
Maybe the rest of us can get in the ring and fight the financial fraud matadors, but Sam is just too much like Ferdinand for that.
Reading Assignment
Before my writing partner, Shahla Alai-Rosales, headed out of town for a few weeks, she left me with a reading assignment. (Once a professor, always a professor, she gave me more than I think I can consume in the time period allotted.)
We are looking for books that could be competition or complementary to the book we are planning to propose to a few specialty publishers — a book about decision-making for parents and caregivers.
For those of us loving and supporting someone with a disability, those decisions can feel pretty high stakes sometimes. Our kids aren’t as resilient if those decisions end up being mistakes. Most of us expect to have some role throughout our child’s life in that decision-making, but it’s easy to get in the habit of doing more than you should.
(Brief digression: Some years ago, my husband wanted me to take over driving while he tended to some other task in the truck. For some reason, he kept barking out directions and reminders to me — something he did not normally do. I drove past the on-ramp to the freeway and he asked me why on earth did I miss that. I told him that for the past several minutes he had bossed me around so much he just took my brain away. I wish I could say we laughed then, but I can’t, and that is the end of this digression, since I hope my point has been made.)
One of the books is by the Turnbulls, et al., from the University of Kansas. Heavy hitters in the world of disability studies and powerful voices when it comes to parenting and advocating. It’s title “Disability and the family: a guide to decisions for adulthood.” (1990: Paul H. Brookes Publishing)
The layout looked like other books I had to consume in grad school (unbearably dense), but it belied it’s content. It’s readable and full of terrific information.
It didn’t take long for me to get hung up on a page that spelled out the steps of a decision-making process. And they are:
Defining the problem or need
Brainstorming
Evaluating and choosing alternatives
Communicating the decision to others
Taking action
Evaluating the outcome of the action
It’s pretty easy for me to imagine Sam being able to define a problem or need in many situations. But there are scores of situations where brainstorming and evaluating alternatives would vex him.
For example, Sam wants to move into an apartment. But we have done some computer searches and I can tell he has no idea how to find a place that’s safe, appropriate and economical.
My first apartment choice was an unqualified disaster. My roommate moved in three months earlier than me, enough time to set up patterns for her cats to urinate on the carpet (the odor made your eyes water) and to leave dirty dishes long enough that the roaches swarmed as soon as the lights were turned out.
I complained. She made some changes, but ultimately I couldn’t get out of there fast enough.
The next place wasn’t much better. A firetrap on the second floor, with a neighbor who cooked on his hibachi at the top of the stairs every evening.
The next place after that was a house I shared with two other girls. It was a lot better, but not without its inequities. I allowed them in order to get along.
It helps to know what to think about. He’ll need more help than the admonition I could get away with making to my other kids, “don’t make the mistakes I made.”
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.
That All May Read
Yesterday we mailed back the digital playback machine from the Texas State Library. Sam has been a client of the Talking Books program since elementary school. Many nights the boys put in a Harry Potter book, or Hank the Cowdog, or Lemony Snicket, and fell asleep as the story unfolded.
That doesn’t really work for Sam’s life anymore. He’s working two jobs and, come fall, will be taking two classes online — just 12 more credit hours, four easy classes — and he’ll have his associate’s degree.
I bought him a Kindle two Christmases ago, in hopes that the Kindle — which has the capability of converting text to speech — would fill the gap in his life.
It helps when a textbook is available as a Kindle edition. The book can be read to him and that improves his comprehension. We can’t expect the Talking Books program to keep up with that kind of need.
But book publishers don’t want to cooperate with the e-reader formats. They likely consider what happened to the music industry as a cautionary tale. His most favorite books aren’t available, probably because the most popular authors know that where they go, is where the e-reader goes.
We’d pay for the damn books if they play nice with Kindle, which had the decency to offer text-to-speech. We’d buy another e-reader if they would quit buckling to the audio book market and enable text-to-speech.
While everyone else waits for market dominance — or, in the case of JK Rowling and PotterMore, apparently positions for the continued chaos — people like Sam can’t participate.
It just shows how little we really think about people when our vision is clouded by money.
Overheard in the Wolfe House #109
Peggy (over dinner): So how was your first day at work?
Sam: Fantastic.
Peggy: How many circuit boards did you build?
Sam: Hundreds.
Getting By With A Little Help From Our Friends
After my public whine about DARS, a few friends reached out with unexpected and much appreciated offers. Sam seized on them both, forwarding a resume to one and securing an interview with another.
I accompanied him to the interview, in part because I wanted to see my old friend, but also because she asked that I be there.
My friend runs a company started by her late husband assembling circuit boards. I’m sure there is nothing in “What Color is Your Parachute” or any of the other how-to-get-a-job-books about bringing your mom along, but that’s how we roll.
Sam and my friend communicated just fine together. They are both straight shooters. She gave him a tour and checked his ability to do some of the fine motor work. Then she told him she would work around his Albertsons schedule for now. Very classy. If it doesn’t work out, there is an easy retreat for both of them.
But I have to say, at the end of the interview, when she asked about another task altogether — helping her link up some kind of time clock hardware to her current accounting software — I saw a huge spark in Sam’s eyes.
They Just Don’t Get It
I called DARS today — that’s Texas Department of Assistive and Rehabilitative Services to you non-Texans out there.
I reminded the counselor that we had talked more than six months ago, looking for help finding an internship … but if not, soon he would be graduating and, in the eyes of the state, “underemployed.”
Well that day is here, and could they help with a job search and a coach, like they did with Albertsons, only with a tech job?
She said just about every way she could that she couldn’t help, and I listened and listened. Then when it was my turn to talk, I said, I’m not sure what all I just heard here, but essentially I heard that you can’t help.
Oh, no, she said, that’s not it. I just don’t want you to have any expectations that we’ll be successful this time. The providers they work with don’t have contacts in the tech world. The best network will be the one I can make for him. Besides, the job market is really soft, no one is getting hired. We could be at this for a very long time.
Essentially, repeating herself, but objecting to my characterization of what she says.
Yeah, I get that at work a lot.
But, I kept my mouth shut on the characterization and went searching for common ground.
Sam needs help navigating this alien world of job-searching. He needs help searching and applying for jobs. He needs help with the interviews. And once an employer is ready to take a chance on him, he’ll need help for a little while — and so will the employer — understand the expectations and learning how to communicate with each other.
Mercifully, at some point, before she could reply to me with another round of negativity, either my phone hung up on her or her on me.
The guys at nonPareil have seen it — Sam understands and works hard. He loves to solve problems, and he has a lot of stamina and thinking power to do it.
I called Gary Moore, who collects stories like these because he hears from parents every day, just to add to the pile. The pile know as “DARS just doesn’t get it.”
He called back and did some brainstorming with me. Lots more than required, but I appreciated it. He reminded me that Sam built a bunch of computers during his internship with nonPareil, computers meant for DARS clients.
But DARS can’t help him find that employment.
Duh.
First Things First
Sam and I spent a good portion of last Saturday afternoon talking about Maslow’s Hierarchy of Needs. The house is going up for sale and he’s very upset about it.
We are about to become another in what is sure to be a long exodus of refugees from the Barnett Shale. An operator has built a gas processing plant next door. I’m not sure we can even sell the place, but I have to try.
My brother-in-law is an attorney for a pipeline company in another state. Even his eyes popped when he saw what we’re being asked to put up with.
(image borrowed from Wikipedia)
Sam has known this has been coming for a long time, but struggled to see the new order of things once we leave. I’m not surprised. People with autism can barely understand our cryptic social orders to begin with. Upend the whole thing and he doesn’t know what to do.
Well, the wise Mr. Maslow said that first comes things like breathing and food and water. Breathable air is already in short supply around here, having a next door neighbor dehydrating gas, blowing off relief valves and burning raw gas to run thousands of horses every hour to keep that 16-inch line compressed adds serious insult to injury.
Not to mention, if that 16-inch line ever goes, we go with it.
Seeing it on the pyramid, along with things like food and water helped him understand.
He’s fretted for more than a year about what would happen to friendships if we aren’t living in the same place we’ve always been. Half his school chums are graduating, too, and getting jobs far from here. Somehow, Sam saw himself as the anchor in this changing storm.
But friendships are much higher on the pyramid. As a visual aid, Maslow scores for us. Sam finally understands why the exodus is necessary.
First things First.
The Second Biggest Mistake Ever. Or Not.
For a graduation present, I bought Sam an iPhone.
Second only to buying him an old car for Christmas, it was shaping up to be the biggest mistake I ever made.
Family members, friends, and all the AT&T retail sales reps and guys from the Genius Bar at the Apple Store down in Texas have been getting an earful about the Bad Decision Apple Made, one that makes it impossible to assign properties to your contact groups.
It was something his old Nokia phone could do, and he warned me (and has reminded me repeatedly the past four days that he warned me) that without that feature, it was a deal-breaker.
It didn’t matter that he could turn on the navigator to help find an alternate route to the airport today, or to the Apple Store. It didn’t matter that he could play his favorite music on it. Because he couldn’t tell his phone to ring one way for a call from a family member and another way for a call from friends, the phone might as well go in the trash can.
He tried finding apps. He tried work-arounds I found on various help sites. He could create the groups in Outlook, but Outlook wouldn’t cooperate with the sync. Even if he gets that to work, he’d still have to program each individual contact with his preferred ringtone.
A waste of time, Sam said. He’s right, of course. But I told him that if it’s really that important, he’s spending an awful lot of time figuring out the work-arounds. So much time, in fact, that he probably would already have had all 60-ish of his contacts programmed.
Yes, he said, but why should he have to waste his time because of this Bad Decision Apple Made.
Then it dawned on me. He could write an app for that.
We had an animated discussion on the way home from the Apple Store about it. I told him a lot of people learn to make a good living by solving problems people want solved.
His perspective changed. Or he at least stopped saying I made a huge mistake buying him the phone. He recognized developing an app as a project, and one with some big hurdles, but he’s on his way.
When we got home, he made his first “alert tone” in Garage Band, one that he used on his Nokia that he’s upset wasn’t on his iPhone. And we looked up resources for app developers.
This could be an interesting summer, especially as the job hunt begins.
Just a bit more at NCTC
The vice president for student services bent Sam’s ear at a graduation reception for NCTC’s TRIO students earlier this month, and convinced him that an associate’s degree was within his grasp.
Sam had given up a few years ago and started pursuing the certificate, rather than a full degree, after he took American Government (more on that in a minute).
We learned that he no longer needs American Government to get the associate’s degree. NCTC has since changed its core class requirements and the history class he took fulfills that humanities requirement.
Just a few more computer classes, probably all online, and he can file for the associate’s degree. In Texas, that degree is some serious higher education currency. With it, he can transfer all 30 hours to any public, 4-year institution and be halfway to a bachelor’s degree.
And that might mean something some day.
I was devastated when he made that run at American Government two summers ago, because it was the last non-computer class — the last real hurdle — to an associate’s degree. Similar to college algebra and one of his other core classes, I thought he would take it all the way through to the last possible day to drop, drop the class, and try again.
It’s not the best way to go at a class, I suppose, but it worked for Sam.
When he got to the last day and dropped, I asked him when he would take another swing at American Government.
Came his answer: “I don’t care how many times I take American Government, Mom, I’ll never understand it.”
Amen to that, Sam. Amen to that.