Monday, April 09, 2007


Once upon a time there was a little girl that lived in a house full of crazy people. The little girl read books. The books took her head out of the house with crazy people, and into the minds of others.

In junior high the girl read an obscure book, For the Love of Anne, a book about a family struggling to raise a daughter with autism. The girl was fascinated with this disorder, and never quite forgot that book.

In high school the girl had to write a term paper. Long before computers, this girl fought with Liquid Paper and poor typing skills, and turned in 10 pages of research on the subject of autism. In 1980 there wasn't a lot of information on autism, the girl read all that her library had.

The girl went to college and eventually became a teacher. She found she had a propensity for the "special" kids, the ones nobody else wanted in their classrooms. She tended to get more than her share of the discipline problems and the "slow and low" kids.

Eventually the girl became a woman and had children of her own. She continued to teach part-time, until such a time that her own child, her youngest, a son, was diagnosed as both slow and low. With each diagnosis came more inherent therapies the woman realized she alone was responsible for carrying out.

Words like Pervasive Developmental Delay and Autism were thrown around, then dismissed. Autism- with that "aut" for "auto=self" did not truly define her son. Although he certainly had the speech delays/communication issues, the "off" social skills and plenty of repetitive/odd behaviors, this boy was NOT about "self". This threw him out of the Autistic Spectrum Disorder into No-Man's Land. He remains to this day, the boy with 8 different diagnosis but no syndrome.

This woman noticed a fascinating trend, everyone around her was starting to have one of "these" kids, too.

"It HAS to be the water!" some said.

"The east side of Portland is worse than the west side," she heard.

"They're looking at the wrong generation," some felt. "They should be looking at OUR generation, the mothers and fathers. It was all that Tang and Space Sticks we ate growing up."

More questions than answers came up. Soon the woman was hard-pressed to think of one single family she knew that DIDN'T have a "weird kid" of some sort.

Again the woman hit the books. With the advent of the Internet she found herself able to research anytime and all the time. She did.

The woman still continues to learn. She knows that every 20 minutes a child in the US is diagnosed with autism. Autism is epidemic. They know there is both a genetic predispostion/susceptibility, as well as an environmental "trigger(s)". What the trigger is/isn't is highly controversial. Read my friend Michelle O'Neil's blog for much more on that subject.

The woman now is much more interested in what to do about these kids, than in what made them this way in the first place. She appreciates that there are those tireless souls doing that for her, so she can focus on preparing for the epidemic to hit the school systems, HARD. Schools are ill-equiped to deal with this epidemic. Schools that are equipped are small and expensive, and not an alternative to most. The woman knows it is one part of her calling to be on that end of this situation. These kids aren't going away. They are going to be hitting our systems in droves. It will force an educational revolution. Teachers will HAVE to teach differently. "Other people" will HAVE to look at disabilities differently. Progress will HAVE to be made in how we fund these expensive kids (estimated $10 Million to provide for an autistic person's lifetime expenses/care). Our justice system will have to be re-educated and re-structured. Our healthcare system will need a re-vamp. Our environmental awareness will need a big push.

Autism is a bigger health/public crisis than breast cancer or AIDS. We all ARE affected by it already, some just much more up close and personal. Fortunately, I read this from the Dalia Lama, and I have high hopes that our world will meet the challenge. We are in a renaissance of sorts, profound shifts, for the better, are being forced because of these kids. It's a great time to be alive and part of the revolution taking place!

"The world in general... is changing for the better. In recent times there is definitely a greater awareness and appreciation for peace, nonviolence, democracy, justice and environmental protection. The recent unprecendented response from governments and individuals across the world to the tsunami disaster victims reaffirms that the world is truly interdependent and the importance of universal responsibility."

Again, I'm so appreciative that Oprah did a show last week on autism. Can't wait to sit on that yellow couch and tell her in person!

11 comments:

Michelle O'Neil said...

I can't belive you read a book on autism in the 80's? You wrote a 10 page paper? Oh wait....yes I can.

Carrie, you are a teacher through and through.

You are a light in the world.

Love.

Love.

Love.

You're right. A transformation is underway. The best is yet to come.

Suzy said...

I think the girl that became the woman is phenomenal, and so is her writing.

Love you

Suzy

Jenny Rough said...

I can't believe you read that book either - wow. I love that you wrote a term paper on it!

Jerri said...

If I believed in coincidences I'd find it quite a coincidence that you wrote a paper on autism in the 80s. Since I don't, I find that fact totally in synch with the workings of the Universe.

As Michelle says, you are a teacher, through and through, Carrie. Those of us lucky enough to know you learn from your strength, your Spirit, and your words, over and over.

Thank you.

Deb said...

What a powerful lesson you offer here, Carrie. Oprah will be lucky to share a couch with you, and the world needs your clear and positive voice. You are the best of what teacher means.

riversgrace said...

When I was 19 I read the book Son Rise (Barry Neil Kaufman)about a boy with autism. I was so moved by it that I went to MA to do a week-long workshop at the Option Institute. This family was told their son had brain damage and would never recover...so they worked tirelessly themselves and developed a method of 'being' with him. It was also a TV movie in the late 80s.

Anyway, thank you for describing another aspect of your journey. I love to learn about it in sequence....and would love to know more.

Anonymous said...

This is amazing but not surprising. I truly believe that the world needs to hear your voice via the yellow couch as a perfect medium. But what will be your message...? because some will want to limit or eliminate these babies, children, teens, adults...and aren't we enriched by the likes of Rojo???

Kim said...

Absolutely fantastic post. You are SUCH a powerful teacher, mother, woman. You have made such a difference in so many lives already, and you have only just begun.

You and that amazing little boy--I can't imagine a better team!

jennifer said...

Great post! Great Mom! Great woman! Great thinker!!!

I'll be there, in the green room, while you are on the yellow couch, cheering you on.

kario said...

I love that your motivation is so progressive and so personal. I love that the way you react to all of these difficulties is not by feeling victimized but energized to do something to help others in your situation. Talk about enlightened!

holly said...

Wow. Really amazing post, Carrie. Ditto everyone else.

When I was in 6th grade (81??) my school added a classroom of kids with autism And I was totally fascinated. WHen I was 13 or 14 I spent a summer babysitting an 8-year-old girl with autism (two or three full days a week, all summer)

This woman is ready to stand right next to you in the fight for these kids - can we start w/ the f'd up insurance industry that refuses to cover therapies?