10.23.2008

Why Don't We Want to Recover Leelo?

What I say to well-meaning family and friends who want to know if we've thought about "recovering" Leelo just like Jenny McCarthy "recovered" her son:

I personally don't mind reading about autistic children who are doing well, as long I'm not told that what that family did to help their child is a cure! that will help *all* autistic children, because that's just not true.

We did try a lot of the biomedical approaches, but they weren't helpful for us, so we shifted our focus to therapies like ABA, speech, and occupational therapy that were actually helping Leelo gain skills.

Most of my friends in the autism community now think that "autism" is a banner term for several not-yet-differentiated conditions and syndromes. My son participated in a detailed study at the MIND Institute regarding autism and regression that was based on home videotapes of his development. No regression was evident. So, he's just not like [Jenny McCarthy's son]. The fact that they have the same label just means that we need more research and better diagnostics.

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9 comments:

  1. Anonymous7:19 PM

    ...and when people ask things like that, it kinda insinuates that you (we) aren't doing enough for our children. I personally don't like my son compared with others...no two are alike, just like snowflakes. And, I don't like being made to feel like a bad mom for not 'curing' my son.

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  2. I am sorry people have been so unkind to you Squid. Clearly they no nothing about the work you have done in your home for Leelo, and in the community for so many other children.

    Thank you for always being an advocate for your children and ours.

    *******************************
    and I just deleted the other four paragraphs I had written about my disgust with the Jenny McCarthy's magic-cure arrogance.

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  3. Anonymous8:11 AM

    People don't realize that "autism" is the latest catch-all for childhood developmental disorders. The neurologically diverse are just that . . . diverse. Bio-med works for some, drugs work for some, sensory integration works for some, OT, PT, speech therapy etc. There is no right answer because we don't know the cause, we can only try the various options to determine what works best for our children and hope we don't bankrupt or drive ourselves to drink in the process. I get so impatient with the assumptions that what works for one child obviously will work for mine. Good luck on your journey to find what works best for your unique precious and challenging child.

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  4. Well said. There is room for both, and autism encompasses a lot of causes and I am sure they will figure that out...eventually.

    You have an award at my place. Come get it.

    Get Your Award Here!

    T.

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  5. THANK YOU! My son doesn't need "recovered." He isn't ill. He's wired differently. We focus on the best way for him to make his way in a neurotypical world, and the best way for that world to understand him.

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  6. Well said -- and in a concise way, unlike when I try to flesh this out.

    Many causes, many cures.

    Wish the publicity about stuff like this wasn't so black and white. It is so damaging to those folks who fall within the gray.

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  7. Why should I recover my son? When he gets lost, the police bring him back.

    (True snark, also true story!)

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  8. Recover? As in get back.. what? More love? More normal? More.. what? Dude is the person he is meant to be. I wish I could recover the friggin' good manners and respect of others who think my kid is the one that needs to change.

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Respectful disagreement encouraged.