Bloom falling off the yellow rose …

By Peggy | August 28, 2010 |

Texas faces an $18 billion deficit, and it is likely that some painful cuts will fall on the state’s most vulnerable — as if this state’s services for the aged and those with disabilities and special health care needs weren’t already starved for resources.

Here’s what could be lost, simply assuming the across-the-board 10 percent cut ordered by Gov. Perry:

Community Mental Health Services = $80 million
State Mental Health Hospital Services = $44 million
Children with Special Health Care Needs = $24 million
EMS Trauma = $23 million
Mental Health Crisis/Transitional Services = $10 million
Primary Care = $9 million
Immunizations = $8 million

Some of the beautiful people in Austin who remind the legislators to have a heart, and be smart, with our money, have organized a rally on the north steps of the capitol for 1 p.m. Sept. 1. For more information, call Dennis Borel or Chase Bearden at 512-478-3366 or e-mail: stoptexascuts@gmail.com.

Posted in adults with autism, hope, self-advocacy

Kindle for special readers

By Peggy | May 8, 2010 |

Sam is finishing his second all-online computer class this semester, Introduction to Database, a class for which he had two versions of the textbook — traditional and Kindle.

He was slow to warm to the Kindle, Amazon’s e-reader that I bought him for Christmas, but by the end of the semester, his study routine depended heavily on two key features — “text-to-speech” and “search this book.”
By the middle of the semester, he got in the habit of starting each tutorial with the Kindle reading the opening scenario and concepts to him. When he got to the working steps of the tutorial, he went back to the textbook, so he could slow the pace down.
We found that to be one of the disadvantages of the text-to-speech feature. You have to turn it off in order to navigate around the book.
[I can see why the Kindle was abandoned by some universities that were trying it out — accessibility problems and some publishers holding onto reading rights (um, publishers, let’s differentiate between that and performance rights, ok?)]
When Sam got to the end of a tutorial or unit, he used the search to hunt down passages to evaluate true/false or multiple choice questions on his quizzes. His quizzes were timed — he had an hour to answer 20 questions — so the Kindle had the potential to get him to the right spot quickly.
Occasionally a quirky search result made us wonder if a low battery affected the power of the search.
After several tutorials, the professor provided a long list of prompts that went back through three or four chapters in order to prepare for the exam. Sam has long been accustomed to using indices and glossaries, but I watched him use the Kindle to make quick work of those searches, too.
One note of caution: the reader who is spatially oriented won’t like how the search-the-book feature drops you into the middle of a passage without any sense of where you are in the book. Locations are numbered. There is nothing in the margins of the screen that specify the chapter, page number or any other context, unless you happen to fall below a heading of some kind.
Along the way, I showed him how to use other features — highlighting and annotating. Sometimes, a concept was better understood by highlighting the the topic sentence of several consecutive paragraphs.
And sometimes, I could explain a concept better than the author, so I inserted an annotation. Sam is smart, and most of the concepts are explained plainly and directly, but not always.
We writers that think we are being crystal clear with our explanations find out how sorry our directions are with readers like Sam.
For example, in the guidelines for designing a database, the first recommendation is “identify all the fields needed to produce the required information.” Translation: make a list of the fields. Next, “organize each piece of data into its smallest useful part” and “group related fields into tables.” Translation: break up any fields that can be made smaller, then sort them.
I really couldn’t translate the concept of “putting common fields in each table.” At that point we had to draw a lot of pictures and work with a lot of examples.
Which, by the way, the Kindle needs a drawing tool.
[Sam never liked writing in his books, since he always wanted to sell them back at the end of the semester. I’ve learned that computer majors and music majors experience obsolescence in their disciplines at a different pace.]
With charts, the Kindle also comes up short. The text-to-speech feature doesn’t read them. And they enlarge only one level (you have to position the cursor over them until the plus-sign appears in order to enlarge them.) If Sam hadn’t had the book, he wouldn’t have been able to complete some of the later assignments, because the book asked him to copy code in the chart.
The embedded dictionary is a powerful feature. Early in the semester, Sam needed a lot of the early vocabulary defined for him. With previous courses, he often skimmed past unknown words hoping he’d get the context eventually. I could see the point — everything is moving so fast if you spend too much time looking up words you’re scared of getting even further behind.
I don’t think professors realize how much new vocabulary they throw at their students at the beginning of the semester.
All in all, though, Sam said he’ll be looking for Kindle versions of next year’s textbooks. It was a powerful tool. He recognized it’s power when I first showed it to him, and was almost afraid of it (he called the dictionary “addictive”), so if you plan on introducing it to your special reader, go slow at first. Look for teachable moments, they’ll come.
I knew we were good when I borrowed it one morning and had to promise to have it back by that afternoon.
Posted in adults with autism, language, self-advocacy

The meaning of success

By Peggy | April 24, 2010 |

Mark and I made a leap of faith when Sam turned 18 years old not to seek guardianship. Something about guardianship felt over-the-top for his protection.

With him at home, it’s easy to keep tabs on a host of things as he builds his life skills — from maintaining his car to keeping his checkbook.

The older he gets, the more that feels like the right decision. I should keep my checkbook as well as he does. And the kid bought himself a set of tires this week the day after the mechanic advised it. I’m still trying to squeeze time for an oil change.

I’m glad that, even as I prepared my own will, I made sure none of the provisions I made for my kids implied something else for Sam than what Mark and I have done so far.

Here’s some Monday morning quarterbacking for parents of high schoolers or younger who think it may be possible to make that leap: follow your best instincts, but remember, once your child is out of high school, you have very little say in their accommodations.

Sam’s first year of college was tough.

I can’t say we weren’t warned. The last years of high school, Sam came to his ARD meetings (that might by an IEP meeting to those of you living in other states) to learn self-advocacy. He was getting the hang of it by the end of his senior year.

We did our best before his first semester at North Central Texas College to introduce Sam to the counselors in the TRIO department. I showed them the examples of the kinds of accommodations he needed — copies of the teacher’s notes, extra time to complete assignments on occasion, tutoring, and taking tests in the TRIO’s test center. Sam was there and was familiar with all that, but it would take him some time before he would get the hang of scheduling tests and tutoring sessions.

After the first meeting, I wondered if they had their doubts he belonged at North Central Texas College. We made a leap, and hoped the net would appear. Sam has this way of winning people over — and he did.

He got that charm from his father.

He missed some things the first year of college, and not all of that was solely his problems or responsibilities. (We’ve got a long way to go, if college campuses are going make the changes needed to accommodate this wave of kids coming of age.)

At one point, Sam signed a letter giving his TRIO advisor permission to talk to me when he was having trouble. We talked several times the second semester, and it looked like he was getting his sea legs. The semester after Mark died was rocky. I was deeply touched when three of the counselors there invited me to lunch. They were worried about how Sam was coping. We talked a little about how to help him, and I knew. They were as vested in his success as me.

That seemed the ultimate goal of self-advocacy: convince someone other than your mom to invest in your success.

Posted in adults with autism, self-advocacy