Wednesday, March 30, 2011

what i want you to know about max.

this is a freeze frame from a video I shot of Max playing outside.
One of the words I struggle with most when it comes to describing any person with Autism is "Autistic". Whenever possible, I describe Max as "having Autism". It is the difference of only a few letters, but I do my best not to say things like "Max is Autistic". The key differentiators for me is that while Max may be on the Autistic Spectrum, and he may have a moderate to severe case of Autism, HE is not Autism. So, to describe him as "Autistic" is to sum him up in one word, and he is so much more than that.

My friend Ellen, who writes Love That Max, a blog about her son, also named Max, who has Cerebral Palsy, summed up a similar feeling (but much more eloquently than I have here).  When she writes "My child with cerebral palsy is not defined by his disability. He is a cheerful, outgoing, spaghetti-eating, purple-loving kid who happens to have CP" she could be talking about my Max (minus the spaghetti and love of purple).

My Max, he loves tomatoes, waffles, and bouncing on his trampoline.  He has a devilish smile when he knows he is up to no good, and his favourite tv show is Elmo.  When he enters a room, he wants to be noticed and always announces himself with a huge grin.  He is strong as an ox and we suspect will easily clear 6 feet tall (and then some).  He is an amazing climber, loves to run, and would spend the entire day outside if we let him. 

Max also has Autism. All that means is that he has to work really hard to fit into a world that isn't set up to accommodate him.  I call him the "hardest working kid in Autism" because every day he works his butt off to learn, to master new skills, to figure out what makes the rest of us tick.  That's more than I can say for most people.  When is the last time that you had to try multiple times to make your needs known for something relatively simple like a glass of water, or an apple? Imagine having to exert that effort every time you opened your mouth.  Now you understand why we can't stop smiling when Max says things like "Max go downstairs" and "I want milk mommy". 

The point I am making, is that Max is more similar to your kid than he is different.  He calls out for his mommy and daddy when he falls and hurts himself.  He breaks his little sister's toys.  He likes to play in the dirt and get completely filthy.  He's a kid.  A kid with Autism.  But most of all, he's Max.

7 comments:

  1. I feel like i give this lesson on a daily basis. Person first language, folks!

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  2. Anonymous10:40 AM

    Beautiful, beautiful post. And this sure captures the little boy I know!

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  3. This is so well said. I loved learning more about your Max! Our kids also have this in common: my Max also loves to bug his sister. Big-time.

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  4. Anonymous11:35 AM

    Use of the word "autistic" is something I am sensitive about too (although my view of the issue changes at times). This issue is also the one thing I noticed about your old blog posts- you sometimes used the word autistic to describe Max. I am glad that you are trying to see him more as a person first. The words we use to describe our kids are very powerful. I also bristle when people say there's something "wrong" with children with autism. Or if people ask "What's wrong with him?"

    Lately I've started to understand the view of others that don't feel offended by the adjective "autistic". This is an interesting look at the issue:

    http://www2.washingtontimes.com/neighborhood/autism-unexpected/2010/aug/2/autistic-or-person-autism/

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  5. cherie kollee12:11 PM

    Love that Katrina you know the exact words to sum it all up! I was over the moon when Eve took my hand to get her a drink of milk! its the first time in her almost 3 yrs she has really really communicated her needs and have them met! To have a child on the spectrum high or low; really makes you think about everything; how clever my Charlotte is her twin sister also ASD -pull a chair up to the highest wipe/write board (hubby thought she couldnt reach) and after the chair being taken away -grabs a broom to get the markers on the top section of the board so she can write on it! -its incredible how they think of something so complex not even 3 yrs old--

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  6. @Anon - I have always seen Max as a person first and have rarely referred to him as Autistic. I usually do it when I need to get someone's attention, like at the ER. Thanks for the link, I'll check it out :-)

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  7. I loved learning more about your Max! Our kids also have this in common: my Max also loves to bug his sister.

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