Love. Listen/Observe/Read. Act. Repeat.

Saturday, April 30, 2011

Overheard in the Wolfe House #98

Peggy (through the bathroom door): I can't talk right now. I'm sick.
Sam: I'm feeling queasy too. (to himself). Both Mom and I are sick at the same time. It's a fungus.

Wednesday, April 27, 2011

Overheard in the Wolfe House #97

Sam: Sorry to send you to the store before you came home.
Peggy (handing over the new color print cartridge): But I did it.
Sam: And it's wonderful.

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.

Tuesday, April 26, 2011

Getting distracted

I didn't think it possible we'd get through April, autism awareness month, without at least one discussion of "it."

Andrew Wakefield and the MMR vaccine and autism.

Oh, I am so weary of "it." But The New York Times ran a nice long one for us on Easter Sunday. All about the parents who irrationally defend the doctor who can't even practice medicine anymore. He still believes. So do they.

His one legacy may be his identification of the need to research bowel problems, and to that I say, amen. That needs to happen.

But my goodness people, don't go experimenting on our children based on some half-baked theory. First, do no harm. Even when we vow to be conservative and gentle, we can find there dozens of ways to get after problems that need to be solved.

I believe the rest of this battle is a distraction for parents who need support in their grief work, and support in dealing with this role of caregiver that can be unbelievably demanding. Don't stand on a balcony in Austin, Texas, and pretend you are in Tuscany. You're wasting our time.

Thursday, April 21, 2011

Overheard in the Wolfe House #96

Peggy: (lifting the tagine lid to check on the lamb stew)
Sam: Wow, Mom. Way to go!

Wednesday, April 20, 2011

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.

Monday, April 18, 2011

The Best Accommodation

I asked Sam tonight about a test he'll be taking tomorrow in his computer tech security class. When he first started at North Central Texas College in 2006, he would often retreat to their student success office to take any test. He needed the quiet room, free of distractions, and the extra time, to get it done.

But the past few years, I've noticed Sam working diligently through test study guides. Now, these guides are often long -- perhaps 50 questions or more, clearly pulled from past tests, possibly on the upcoming test.

Sam works through them all methodically. He looks up the answer in the book or his notes and types it out in complete sentences on a virtual piece of paper. He puts in several hours each time he prepares. And he rarely does poorly on any test he takes any more.

I was curious whether he was going back to the student success center to take the test and Sam said no, he doesn't need that accommodation much any more, especially if a professor can accommodate him another way.

I was a little sketchy on what that detail might be, but Sam has learned to advocate for himself and the professors there at NCTC have come to understand him, too.

I asked him whether he thought those study guides were a good thing. He said they were the best accommodation of all. Once he answered something from the guide, it was "in my head for good," he said.

I wondered about all those students who might see a 50-question guide, skim it, and say to themselves, "oh, I know all these answers." I know I was one of those kind of students in my day. I got away with not going fully into the corners as I learned things, something I do not do anymore. I got bit one too many times in my life by not quite knowing what I should know.

Most of the time, all that is required is a full, careful reading of the material. And then it's in my brain for good, too -- or at least enough that I know it exists and where to find it again.

He said the funniest thing at the end of our little exchange.

"I don't need many accommodations any more. I feel I'm fully grown up now."

Sunday, April 17, 2011

Overheard in the Wolfe House #95

Sam: (hangs up cellphone)
Peggy: Wrong number?
Sam: Well, I thought it was Aunt Karen.
Peggy: Really? (looking at the late hour on the clock)
Sam: Yeah. She changes her numbers all the time.

Saturday, April 16, 2011

Overheard in the Wolfe House #94

Peggy: So when do you work again today?
Sam: Three to eight-thirty. I'm working for someone else who has prom today.
Peggy: Oh, that was nice of you.
Sam: Yes. I took the work to force him to go.

Friday, April 15, 2011

Overheard in the Wolfe House #93

Sam: How was work today?
Peggy: Just fine. Thanks for asking. How was it at nonPareil today?
Sam: Great. My student had to clean his computer. Of course, I had to supervise.

Wednesday, April 13, 2011

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.

Tuesday, April 12, 2011

Monday, April 11, 2011

Overheard in the Wolfe House #91

Sam: I was getting ready to play some midi-files of Nintendo tunes.
Peggy: That sounds fun.
Sam: I thought you didn't like those songs.
Peggy: I don't like that they repeat.
Sam: Well, you can't repeat a midi file. They have to play through to the final note.

Friday, April 8, 2011

Getting a promotion

I got word today that Sam has built two computers now, and has been asked to train another student there at nonPareil how to do it.

His first promotion.

I asked Sam yesterday whether he would want to take any more computer classes at NCTC after graduation. They probably would let him, I said. "I don't think I'll be doing any more of that," he said.

The cap and gown are hanging in the closet. Instructions for the ceremonies arrived in the mail this week. We are rapidly coming to the edge of the cliff. I have no idea what's in store, but we will do what we've always done before.

Leap, and the net will appear.

Wednesday, April 6, 2011

Overheard in the Wolfe House #90

Peggy: Wow, Sam, thanks so much for putting those dishes away.
Sam: Yeah, well, you're going to be washing more pretty soon.

Overheard in the Wolfe House #89

Peggy (eyes twinkling): So, Sam, what is that package on the office floor?
Sam: That would be my hat and gown. (pause) And that's all I'm going to say about that right now.

Tuesday, April 5, 2011

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.

Monday, April 4, 2011

Overheard in the Wolfe House #88

(Paige grunts in disgust in the other room.)
Peggy: I think Paige is having trouble hemming her prom dress.
Sam: What can she do?
Peggy: Should I go help her?
Sam: Whatever you want. I can't help her.

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.

Sunday, April 3, 2011

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.

Saturday, April 2, 2011

It's About Time

I wanted to put an expletive in the title, but since this is all about respectful language, I didn't.

The Texas Legislature should soon be removing retarded and other disrespectful language from the statutes.

People first language for all of us, including parents.