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Tuesday, April 19, 2011

Growing Up Aspie

We had a Passover Seder at my parents' house last night, and my cousin and his wife came in from the other side of the state. My cousin is 46 years old and has Aspergers. He is so much like my nine year old in so many ways, and I feel really blessed to have him in our family - not just because he's one of the smartest, kindest people I know, but to have someone else with Aspergers in the family is really helpful. He's able to help us understand our son better, and - although our oldest son has no idea he has AS - he absolutely idolizes my cousin. Probably because he's the only person in the world who knows more about snakes than our little guy!

Anyway, my cousin made this statement last night that I have to immortalize here. He was telling us what it was like for him, growing up an Aspie in an affluent suburb of NYC.

"It was tough," he said. "Other kids were into sports and Star Wars.  I was into car washes."

See why I love him so much?

Wednesday, April 13, 2011

Autism, Hope, and Jenny McCarthy

Thanks to some extra credits, I downloaded Jenny McCarthy's books "Louder than Words: A Mother's Journey in Healing Autism" and "Mother Warriors: A Nation of Parents Healing Autism Against All Odds."

I can tell you that my expectations for these books were not high. I had seen Jenny's article in defense of Dr. Andrew Wakefield, maintaining that there is a link between vaccines and autism. I had heard her incredible claims that kids were recovering from autism. And...she was Jenny McCarthy, a B-list celebrity and former Playmate. Why would I have anything BUT low expectations?

But, my curiosity got the better of me, and I used those bonus credits on Jenny McCarthy instead of Ayn Rand. (Seriously, that WAS my consideration set!)

And I have no regrets.

First, I'll say this: Jenny McCarthy is an awesome story teller. Don't let the blond hair and ginormous boobs fool you - this woman can write. She is passionate, funny, and surprisingly articulate. She had me hooked from the first minutes of  "Louder than Words." (Credit must go to narrator Tavia Gilbert, as well - she's fab.)

The story of Jenny's struggle to recover her son Evan from autism is tragic, but inspiring. It had me counting my blessings - I'm so fortunate that our boys never suffered from seizures as Evan did. We never had to hospitalize them for anything relating to their autism. Apart from their asthma and Ig's chronic ear infections, our kids have been in good health. She had to watch her baby go into cardiac arrest before her eyes. I can't even fathom what that was like.

Question all you like Jenny's decision to pursue alternative biomedical treatments. She offers disclaimers left, right and center, and credits ABA, speech therapy and OT for Evan's improvements as much as anything else.   It also has to be clarified that she is not anti-vaccine, although this has been broadly publicized. She questions the vaccine schedule. She questions the cookie-cutter approach we take to delivering all vaccines to all children on this accepted schedule. And she questions the use of thimerosal in vaccines. I'm not anti-vaccine, but I have to admit, I've questioned all these things too. Why are Gardasil and Chicken Pox vaccines mandatory in some states? How did the flu vaccine, which is predictive and has a history of quality control issues, become mandatory for preschoolers? And if thimerosal isn't problematic, why are there thimerosal-free vaccines (and why the hell aren't they covered by insurance?)

What I love about Jenny McCarthy is that she delivers hope. Sure, GFCF diets and B12 shots won't work for all kids with autism...but they might work for some. What's the harm in trying alternative treatments that are safe, non-invasive and inexpensive? Especially if you can get you pediatrician on board to help you monitor. Why not try to gain some control over something that's taken over your life and your child's, if it can only help?

Jenny McCarthy made me realize that I had accepted Ig's autism as inevitable. This is how he is. This is how he will be. We'll do ABA and speech, and OT if we can afford it. We'll try to get him into an appropriate school. Hopefully, this will help him improve. Then we won't have to worry about him running into the street or disappearing at recess if he's mainstreamed at school.

When I pictured Iain in the future, I saw someone  who probably wouldn't be able function independently in the world. Ever.

I'd accepted. And in acceptance, I'd become complacent.

Jenny made me realize I don't have to accept. I can do more. I can change the outcome. I have power. I can help my little boy become typical - better than typical. I can help him put that bright little mind to use in a way that will help him achieve the greatness I know he can!

I don't know that we'll get into hyperbaric chambers and chelation.... but we're starting a GFCF diet soon, for Ig, his oldest brother and me, if not for our whole family. And I'm researching supplements, too. Baby steps...and we'll see how it goes, documenting every step we take.

So... you may think she's a quack, you may think she's a ditz, you may think she's the devil, but I owe a lot to Jenny McCarthy. She gave me hope I didn't even know I needed.

Wednesday, April 6, 2011

Ig's not feeling well

Ig: (Big sigh) "Mom...I'm not feeling well."
Mom: "You're not feeling well?"
Ig: "No."
Mom: "I'm so sorry, Sweetie! What hurts?"
Ig: "My feelings hurt. My feelings hurt, so I'm not feeling well."