No Surprise Here

By Peggy | July 6, 2011 |

Stanford has come out and said the environment is a significant factor in autism causation.

This is not a surprise in the Wolfe house.

At one time, Mark and I hoped that we could be included in a class action suit being filed against those who had polluted on the east side of Sacramento, including Aerojet and Mather AFB. The same law firm that had pursued the hexavalent chromium case against PG&E, the story that become the movie Erin Brockovich, had found a cluster of autism and thyroid disorders there.

The problem for us was, we were living in an apartment complex one street too far west. We couldn’t be in the class because we weren’t living in the Rancho Cordova zip code when I became pregnant with Sam — or so the pre-screening went.

I pushed back hard on the legal clerk who interviewed us. Really, just one street over?

Really.

I learned that day that science and law are two very different things.

Posted in rants

That All May Read

By Peggy | June 30, 2011 |

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.

Posted in adults with autism, language, rants

Working Title

By Peggy | June 29, 2011 |

So, yes, I’m working on another book. My longtime friend, Shahla Alai Rosales, an applied behavior analysis professor at the University of North Texas, and I are putting together a parenting book on decision-making.

We recognized that parents make decisions for their young children everyday. But parents of children with disabilities often make more decisions, and sometimes for the duration of their child’s entire life. We wanted to put together timeless information for parents, guiding their decisions so that they result in lifelong happiness and satisfaction for their child and their family.

I told my co-worker, Lowell Brown (with whom I’d also like to co-author a book on the Barnett Shale someday) the working title for our parenting book:

Between Now and Dreams: A Parent’s Guide for Every Decision You’ll Ever Make.

Lowell’s deadpan response, “You think that’s comprehensive enough?”

Absolutely, dude. And we’re going to pack it all in a skinny little book that you can carry around in your brief case or purse.

We’re going to change the world.

Posted in hope

Getting By With A Little Help From Our Friends

By Peggy | June 23, 2011 |

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.

Posted in adults with autism, hope, self-advocacy