Today is Brooke’s 11th birthday.
11.
When did that happen?
Yesterday we were blessed to have many of her friends and classmates over for a birthday party that included a planned surprise (check over on diary for the details), live animals (her favorite was the chinchilla), dancing, a piñata, pizza, cake and dough babies. I think it is safe to say that everybody had a good time.
https://www.youtube.com/watch?v=8TlX7kyXlCY
But even in the midst of all this fun, I was reminded just how different Brooke is from many of her peers. Watching her throughout the party I was able to see just how far she has come and just how far she still has to go. I don’t mean in the “to be more like her peers” sense, but more in the “developing an ease with her environment” sense.
Anyway, I was reminded of Autism.
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Tomorrow is the first day of Autism Awareness Month. It is a time that many of the big advocacy groups push awareness, fund raising, etc. Undoubtedly there will be arguments and heated discussions between those who align themselves with the various groups. As you may or may not know, for a very long time, Jess and I were supporters of Autism Speaks. Over the course of many years, we walked their walks, we ran their races, we raised a lot of money for them. Last November I ran my last race with them – the New York City Marathon.
Days later, Suzanne Wright would write those controversial words, essentially marginalizing autistic adults. It’s her organization. She can do with it what she sees fit. Jess and I could no longer support them. It wasn’t easy to walk away – in fact, I wrote about the first Charity Miles run I took post-speech…a sad, difficult day for me.
I moved on.
But here we are, on the eve of Autism Awareness Month. I still get emails from Autism Speaks, urging me to “Light It Up Blue!” for awareness. As much as I want to, I cannot. I know that Autism Speaks does not own the color blue, but it seems that they have co-opted it and made it their own (along with the puzzle piece).
Autism Awareness Day is the day after tomorrow. Many people I know and respect will light it up blue.
I cannot.
Instead, I ask you to consider another option. The whole point of the “Light It Up Blue” campaign was to get people to ask, get people curious, get people aware. How about instead of vaguely inviting people to ask questions about autism, we instead do so overtly.
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autism is one word,
but there is no one autism
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nonspeaking does not mean having nothing to say
question what you think you know about autism
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These phrases are on T-shirts (click on each phrase to link to the shirt) that Jess designed in response to our older daughter asking what we should do for Autism Awareness Day now that we were no longer affiliated with Autism Speaks. Initially we were stumped; wearing blue just didn’t seem right anymore – I have even retired the Blue Afro. I don’t say this often enough about my wife, but I think she is brilliant.
I know that at the time of this posting it is essentially too late to get these shirts for Autism Awareness Day, but I hope you will consider not only purchasing one, but wearing it, not just for the month of April but all year round. Autism awareness isn’t, shouldn’t be just a day or month out of the year; it should be 365 days a year.
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As my baby girl turns 11, I ask you to help me…no, scratch that…help my Brooke make “awareness” more than just wearing a color or lighting a bulb…
Challenge your family, friends, acquaintances, yourself on what we know about autism…
Talk about autism…talk about the many autisms…
Help Brooke turn awareness into acceptance, support, respect of differences, but most importantly, love.
Run Luau Run 