The Cure

This afternoon McKenna and I dropped by Barnes and Noble as a treat for her recent accomplishments in swim. While I waited for her to make her selection, I browsed titles in fiction and non-fiction. One of the face-outs on the aisle featured Jenny McCarthy's book about her son, Evan, who has autism.

Jenny is an advocate and has formed a advocacy group aimed at curing or healing kids from autism. Much has been written about the effects of dietary cleansing and detoxing with success in many cases. From my casual glimpses it looks like this book is really about the pursuit of a universal cure for autism.

It may seem strange, but as the parent of an Asperger child--admittedly not a fully autistic one--I have never considered "curing" Wylie of his condition. Since he is a twin and Campbell is "normal", I've never considered that exposure from immunizations or other toxins contributed to Wylie's situation. Therefore, I've never pursued remedies for this. I've been aware of other families and their tireless pursuit of doctors and programs seeking to treat or prescribe or medicate to improve the quality of life of their children. All of this is rational behavior and worthwhile. We've just never taken that step.

I think it's because Wylie has been learning all along to cope with his issues and he has made progress in every area he struggles. Since he learns, and progresses, and grows and responds it just seems natural to allow him to continue doing all that he does with his teacher, his RSP teacher, his speech pathologist, his Occupational Therapists, etc.

So, reading Jenny's book today it made me wonder: what if there was a "cure"? Would I want Wylie to be cured?

It seems the answer should be automatic.

But, it's not for me.

I cannot imagine Wylie any other way than how he is. He is incredibly insightful, deep-thinking, funny, charming, good-natured, honest, kind, different, and engaging. Do his differences cause him suffering that could be avoided if he was cured? Probably. So, I guess if I was ultimately concerned with minimizing his suffering, I would opt to cure him. But, if the absence of suffering meant the absence of some of Wylie's most unique and special qualities, the cure might be more harmful than the disease.

Lessons from the Men's 4 x 100 Relay

Sports enthusiast or not...you have to love the victory from last night's 4 x 100 men's relay!

I just re-watched it and had goosebumps and was near tears the entire time. There are practically no words to describe the moment the team sees the #1 time on the board. But, who needs words when you have Phelps' face?

That pure, raw, energy of emotion could fuel an entire city! (Well, at least a house or two).

Here's what I learned from that race:

• the past does not always predict the present (they had suffered defeat in the previous two games)
• those most likely to win statistically can still lose
• actions trump words
• sometimes being the underdog makes the victory sweeter
• team victories are multiplied in power over individual victories

Much will be written about that race for years to come; the athletes will never forget their performance or the feeling of the win. But, only here at zigzag will the race be viewed as a metaphor for those living with Asperger Syndrome and autism. Here's why:

• the past does not always predict the present or the future (children with Asperger and Autism can overcome seemingly insurmountable obstacles)
• those most likely to "not" succeed... can
• actions trumps diagnoses
• sometimes being an underdog makes the victory sweeter
• team victories are mulitplied in power over individual victories (and every individual victory is a team win when your child is influenced by special educators, speech and language pathologists, resource specialists, occupational therapists, community members, church members, friends, and family!)

Our family will continue to watch the Olympics and cheer every awe-inspiring performance. We may not be able to anchor a Gold-medal-winning relay team, but we can do the best with what we have been given and turn in the performance of our lives with our lives.

Autism and the Pentagon

My way cool husband alerted me to this piece in today's Washington Times: http://www.washingtontimes.com/news/2008/jul/02/the-pentagon-and-autism/

It gives voice to the scope of autism and explains what one branch of the government is attempting to do for families.

Miss Lavonne

If you were born in the sixties like I was, we had Mr. Rogers and Sesame Street. Some of you might even remember Hobo Kelly! My kids had Blues Clues. Now, I’m referring to vintage Blues Clues with Steve--not the new guy, (is it Joe)? The original Blues Clues--what a great show! It had good music, beautiful visuals and a little puppy named Blue that you could almost understand when she barked. Our home had many similarities to Steve’s: good music (four-fifths of the family is musical, sorry Tim!), beautiful colors on the walls and furniture throughout, and a little boy named Wylie that you could almost understand when he spoke. It was no surprise that Wylie loved Blue; he loved the show above all others. The puppy always made him smile and laugh.

There was a segment in each show where Blue and Steve would magically “sca-doo” into a book or a refrigerator or a painting. This involved them singing a little jingle and moving their arms and legs to get ready to jump, or sca-doo: “Blue Sca-doo we can, too!” and in they would jump. Wylie loved to sca-doo. He would do it repeatedly even as a four year old preschooler. This was so cute and precious to me. However, it almost proved the undoing of Miss Lavonne.

“Miss Lavonne” was Wylie’s first Speech therapist. She was undoubtedly married and should have been addressed as “Mrs.” with her last name, but Wylie received therapy at the preschool where all the teachers were called “Miss”. Lavonne was no exception. Miss Lavonne worked tirelessly with Wylie. She was very dedicated and brilliantly creative. She had to be. Only those familiar with the craft or benefactors of its service can truly appreciate what these therapists do in one single session. (Think one part herding cats and one part Professor Higgins with Eliza Doolittle in “My Fair Lady” and you are beginning to get the gist).

We have stacks of homemade books with clue-stuck pictures of nouns, verbs, colors, numbers and letters. We have sheets and sheets of articulation practice. We have boxed sets of cards depicting the range of human activities and emotions for identification. I would like to say I practiced with Wylie as hard as Miss Lavonne worked with him, but that would not be true. To get any preschooler to produce what Wylie had would be commendable. To do so while that preschooler is constantly “sca-dooing”, perseverating about Mary Poppins and Thunderbirds, all the while chain-smoking his middle fingers is nothing short of a miracle! She worked hard. Granted, she only saw Wylie once a week for forty-five minutes or so, but they were intense, focused minutes. And, because she spent a year with him and I valued her inputs, I trusted her completely when she said “I think Wylie’s needs go beyond speech. I think he should be evaluated to see if he qualifies for more services.” See, during this time, I had been doing my own homework. I had been researching Wylie’s “issues” and “behaviors” independently. I knew there was a word that described my child and no one up to that point had said it.

Until Miss Lavonne did.