A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Monday, May 3, 2010

The day I met Temple Grandin

This is me and my friend Maggie. We met the day after Little Bird was diagnosed. She'd been there. She's there now. But, now, we're in it together. Oh, and yes, Temple Grandin really does dress like this. Dude, she's totally stoked to meet us!!

Last week, I attended an all-day Living With Autism workshop. It wasn't called "Curing Autism" or "Autistic No More!" Living With Autism was about identifying and managing symptoms, and helping our loved ones with Autism reach their potential. There were breakout sessions with topics like: special needs trusts, the multi-disciplinary approach to diagnosis, picky eating, Applied Verbal Behavior programs, Co-morbid disorders (when one diagnosis isn't enough), etc. It was pretty well rounded. I looked but around didn't find the breakout session on the magic wand, unfortunately. But, I did run into a lot of people on our "team". I saw Little Bird's Play Therapist, DAN doctor, BCBA (behaviorist), new speech therapist, etc. Hail, hail the gang was all there. I loved running into LB's Occupational Therapist who was with her mom. She grabbed her mom and said, "mom! This is {Little Bird's} mom!" How nice is it that the therapist loves my kid enough to brag about her to her own mother? Well, we have worked with her for two and a half years!!

The keynote speaker was Temple Grandin, who is often referred to as the most successful person with Autism in the world. I hate that moniker. It sounds bad. Lots of people inside and out of the Autism world have become very familiar with her because of the HBO movie about her life that first aired in February. I still haven't seen it. Temple Grandin was like a freaking rock star in that room. She is revered by those in the Autism world. I think parents of kids with Autism are so enthralled with her because she is able to personify the disorder. She can tell us some of the things she was feeling when she needed to flap, spin, be squeezed. So many of our kids can't tell us that. She brought home to me the fact that there's a person inside there; underneath all the behaviors and stims (self-stimulatory behaviors), there's a person who has feelings and fears and real reasons for each stim. Let me be clear: she is still very affected by Autism; she has not been cured, but she has found ways to manage her symptoms. 

Dr. Grandin said some things that were pretty great. Here were some of my favorites:

-It's important to recognize a kid's strengths and weaknesses. It's possible to be in advanced calculus but need special ed for reading... and that's okay.
-Push them. Get them out doing things. Talk about everything.
-Autistic language is memorization. Scripting is the beginning (scripting is like a delayed echolalia. you can google it.)
-Teach flexibility of thinking by using different objects in teaching
-Teach social interaction through shared interests: school clubs, hobbies, classes that really interest a kid. This way, if they need to talk about one topic, this is a safe place to do it while practicing social skills.
-When a kid is acting out but can't express why, we must categorize the problem: is it biological or behavioral? Biology = sensory needs not being met? illness? some medical issue causing pain?  Behavioral = frustration because (s)he can't communicate? trying to escape a task? trying to get attention?
-Here are some hidden medical problems in kids with ASD: reflux, yeast infections, urinary tract infections, constipation, ear infections, H Pylori, etc. Many of our kids can't tell us if these things are bothering them, but you know your behavior would be affected if you had any one of these things!
-We must find ways to make accommodations for our kids who need them. Can't hold a pencil or write? get a keyboard. Can't tolerate scratchy clothes? buy soft ones. Whatever we can do to make daily living tasks easier.
-Autism is not an excuse for poor social behavior. Poor behaviors should be corrected in the moment. Even if it's over and over again.
-Fear is the main emotion that people with Autism feel.
-Meds can be used to bring some relief from symptoms, but there is no medication for Autism, we must focus on and treat the symptoms. It's possible to treat one thing and find another side effect. We must start slowly with meds for kids. People with Autism are sensitive to drugs and NEED low doses. We should always be able to see a result with a med: there should be a wow factor. But never expect 100% control of a symptom.
-Always ask am I seeing progress? If so, what you're doing is working!
-Temple Grandin herself uses medication as well as a gluten free and low-carb diet to combat yeast build up in her gut. She tell us that she feels a lot better on the diet. As well, she uses fish oils, and probiotics.
-One very interesting thing she said was "don't de-geek the geek." This is who these kids are.

I bought two of her books, and I even had her sign them...

I'm really glad I got to hear her speak. This won't be the only time. I just know it.


Piscesgirl said...

Some good and wonderful truths there. It is great to hear from someone who is able to discribe what your kiddo may be feeling on the day-to-day! So jelous about the signed books too! :)

Heather said...

Awesome! I'm jealous- what can I say, I'm one of those people that thinks she's a rock star! Thanks for sharing some of her thoughts :)

Shemtov Family said...

Love this! Thanks Dani:) We should link this!

Deann Reusche said...

I would love to hear more!!! We need to see something up soon

Susie said...

I have heard that she is awesome!

Welcome to SITs! I hope you are enjoying the party:-)

Anonymous said...

How fabulous!! I think I saw her in a documentary on HBO done by a mom from Iceland who was looking for ways to tackle autism. Temple was speaking and I kept thinking, "Wow! She's really insightful! And so articulate! How does she know so much?" It wasn't until toward the end of the documentary that I realized she has autism. Then, I saw your picture with her on FB, and I realized who she was! I bet meeting her in person was AMAZING!
Jenn G

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