Saturday in Richardson

By Peggy | May 2, 2011 |

I will be talking to parents at Education Service Center Region 10 from 9 a.m. to 1 p.m. Saturday.

The meeting will be in the Mockingbird Room in the Abrams Building, 904 Abrams Road, Richardson.

I will be sharing information about Texas Parent-to-Parent and People First language for the first half of the meeting — talks that have been developed and refined by the good people at Texas Parent-to-Parent

During the second half of the meeting, we’ll discuss ethics in treatment decisions, why it’s important, and how to be successful with it. This talk was developed first by Shahla Ala’i-Rosales, a professor of behavior analysis at the University of North Texas, and an expert with years of clinical experience treating children with autism.

I’ll bring a book or two to give away.

Posted in decision-making, problem-solving

Slippery slope

By Peggy | April 28, 2011 |

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.

Posted in adults with autism

Getting distracted

By Peggy | April 26, 2011 |

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.

Posted in rants

What You Know Best

By Peggy | April 21, 2011 |

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.

Posted in adults with autism, hope

The Best Accommodation

By Peggy | April 19, 2011 |

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.”

Posted in hope, problem-solving, self-advocacy, What Sam says