Susan's Blog

Wednesday, April 27, 2011

Bring Me To Your Leader

I have an idea rattling around in my head, for a book project. Tell me 1) who is your autism or disability leader/rebel/outside-of-the-box thinker and 2) what have they created/figured out that distinguishes them? Mine would be Ari Ne’eman, Temple Grandin, Peter Gerhardt, and Eunice Shriver, for starters. People like that, who have begun a movement or figured out something incredibly helpful.  Send me your leaders, your heroes!


Carol Holmes in Toledo, Ohio…she started (with a group of other parents) a year-round public charter school for students with Autism and other developmental disabilities when she was unhappy with what the public schools had to offer/how they were offering it and the available charter school had an incredibly long waiting list. I had the honor of teaching there for 3.5 years before I had my baby and moved home to SC. I’m very grateful to have been a part of that school and can’t wait to go back and visit this summer.

— added by candace on Wednesday, April 27, 2011 at 9:12 am

How’s that for sounding like a brown nose. I read several blogs, but most are parents of children my Ben’s age. They don’t have your experience or insight. It will come, but you’ve been there and seen that.
Things you write like, an older kid with autism just doesn’t look as cute. You may think nothing of making that statement, but it does start me thinking. My son is at that “cute age”., but I now think about teaching him more suitable ways of behavior in public, because at 5 almost 6, it’s not cute to climb on department store furniture, or climb in the display of balls like it was at 2. He’ll be out there, one day, to some extent, on his own without a cranky pre-menopausal b*tch backing him up (that’s me…) I want him to be able to enjoy the world, and ask for what he needs, be comfortable exploring what interests him, just be out there.
I think your admissions to grief allow others to feel less guilty about their own. They can then empower themselves, excuse themseleves, forgive themselves, and their spouses. On so many levels you really have been a help, a source of insight, and warning to some extent that the future is not so far away.

— added by Jacquie on Wednesday, April 27, 2011 at 2:04 pm

Jonathan Mooney. I heard him speak last year and it was almost life changing. I interviewed and wrote about him here:

Beyond his message, which is crucial (“You’re not broken.”), he has created a peer-to-peer mentoring program for kids with learning disabilities.

— added by Stimey on Wednesday, April 27, 2011 at 6:40 pm

Thank you, Jackie.

— added by Susan Senator on Wednesday, April 27, 2011 at 6:41 pm

Though I have *very* mixed feelings about his later efforts, Bernie Rimland certainly had a huge impact, especially in his early work that showed the refrigerator mom nonsense for what it was. The connecting thread I see through all his life is that he wasn’t afraid to think about autism in new ways when he saw that an old, established way wasn’t helpful. In that he was a wonderful model.

Did you ever read “Becoming Citizns: Family Life and the Politics of Disability” by Susan Schwartzenberg? It’s a terrific coffee-table book about “the four mothers-turned-activists who coauthored Education for All, a crucial piece of Washington State legislation that was a precursor to the national law securing educational rights for every person with a disability in America.” One of my favorite parts of the book is when the moms bring homemade lunches to the state legistlature.

— added by Ohio Mom on Thursday, April 28, 2011 at 10:09 am

Carly Fleischmann because she has changed how I look at my sons, and how I talk to them. She reminds me to talk to them as if they can understand at their age level.

Kristina Chew because she was one of the first bloggers I found who writes passionately about having a good life with a child who is has a degree of autism similar to my twins. Reading her description of life with Charlie helps me imagine what life in the next decade or so may be like.

I also second everything Jacqie wrote.

— added by Alice on Thursday, April 28, 2011 at 12:00 pm

I like Jonathan Mooney, too. I think his book “Learning Outside the Lines” was the first time I read about mental health days, that his mother gave him from school. School was hard for my son, too. We had a few mental health days!

I couldn’t understand the professional books about autism. To this day, I still don’t. I guess I find them too boring to get past the first few pages.

Catherine Maurices book, Behavioral Intervention for Young Children with Autism, was parent/professional, and very useful. I used it as a construct to teach my then 3 year old son language via pictures or acting out. He knew nouns…but just heard “wah, wah, wah” whenever non-nouns, especially verbs were used.

Thinking in Pictures was my bible, I read it repeatedly, marked pages, followed advice to the letter. It gave me hope. John Robison’s book, Be Different is a winner. If I could just get Ben to read it. I’ve always liked biographies.

There you go. The books I wouldn’t have wanted to do without.

I think that you and Kristina Chew would be good people to learn from if Ben was less able to communicate his needs. And Casdok. I admire all of you for your strength. Y’all are mama bears in a way, but are more than able to show your fragile side when it comes to protecting your cubs.

So, there ya go.

— added by Rose on Thursday, April 28, 2011 at 2:54 pm

PS—the professional books—were always so negative and never contained anything useful. Maurices book might be seen as professional by some, but it was VERY useful. Kinda like hundreds of pages of curriculum for a teacher, but with a very, very focused intent towards language aquisition.

— added by Rose on Thursday, April 28, 2011 at 3:00 pm

Susan, you’ve always been my personal guru, but I do appreciate your providing the Eunice Kennedy Shriver biography, I enjoyed reading it and found out a lot of info I did not know.

— added by Sharon Jones on Thursday, April 28, 2011 at 3:36 pm

I “almost” mentioned Rimland, but didn’t for the same reasons as Ohio Mom. Still, he changed the world thrus his efforts. The only thing I remember from Infantile Autism is:

“Autisms” were like “blindisms” of “deafisms”, and not due to psychotic mothers…

Oh, yeah…Bettlehiem. At least we became aware of the suffering of the kids. It IS similar to being a P.O.W.—but the world is their enemy, in some ways.

— added by Rose on Friday, April 29, 2011 at 11:15 am

No knock on the late Eunice Kennedy Shriver or her family, but Special Olympics just doesn’t “get” autism. For many families, ours included, the inflexibility of the Special Olympics organizers and judges, especially the lack of asd training among the volunteers (who are fairly exclusively focused on DS and MR), renders their events an “aversive” to be avoided. Not so the training, just the “competitions”.

Early on, my son had a decent and successful, if over stimulative, experience (state champ in swimming) at the competitions, but the chaos, inevitable schedule snafus and ineptitude re asd issues proved too much to subject him to. Our asd team coaches are similarly dismayed. If one did a study of who the judges routinely DQ in competitions, the burden would likely fall unreasonably hard on athletes with asd. I tried raising this issue with the Special Olympics leaders like Tim Shriver but got zero traction. They appear to be ignorant of the issues our community faces and unwilling to learn. Pretty sad, actually.

— added by Dadvocate on Friday, May 13, 2011 at 10:57 pm

In the spirit of your positive post, my asd “hero” is the out of the box thinker and controversial (in some circles) Dr. Michael Chez of the Sutter Neuroscience Institute and Head of their Pediatric Neurology Sutter in Sacramento. Why? Look at IMFAR. The published work he did a decade or more ago on sub clinical eeg abnormalities and epilepsy as a fellow traveller with asd is now accepted and being presented this year. So too the subgroups he insisted were very different (and overlappimg) in etiology but called for individual treatment protocols. So too his dogged pursuit of fixing immunological insult for some, including this year’s breakthrough presentation on adults w/ asd who present with catatonia (12%+ of the population), who improve with anti strep interventions. Unreal. He is routinely 5-10 years ahead of everyone at major institutions. Period. His peers know it. We should too.

— added by Dadvocate on Friday, May 13, 2011 at 11:20 pm

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