I wrote this back in 2011. Not much has changed beyond my girls growing older and my dear Dad passing away in February at 94. Share your thoughts on April - and what you would like to see that would help not only you, but others outside the community (are there any people left not affected in some way?)
By Kim Stagliano
I'm aware. I get it. I have 3 girls with autism. I am bludgeoned about the head, shoulders and heart every day. Awareness - it's only a word. It's passive. If I am aware that you are hungry and I don't ask if you have any food, then find you food and help you to eat, what the hell good does it do for anyone to say, "Oh, that Mary Pat is STARVING over there on Main Street and I feel uber-special helpful since I know it."
Of course most people aren't so callous about awareness - and there's a ton of great work being done not only this month, but day in and day out. Teachers, therapists, researchers with a death wish (snark alert) parents, friends, family - it's wonderful to see the outpouring of support and thought about autism. However, I'm tired, just came off a week of 3 kids with strep and have a head cold. So I'm feeling very snarky.
A month of "light it up blue?" I guess it's like Coke red. Fine. If you have the budget, you can brand anything you want. Hell, why not come up with a jingle too? Let's see.... Try singing this? "Autism was 1 in 10000 not long ago millions spent on genetics and the numbers oh they just groooooowwwww!" (That sounds best when sung out of tune sort of to the old "A sprinkle a day" Shower to Shower powder jingle, by the way.)
A month of puzzle shaped bright blue cupcake toppers? I saw those online and got so annoyed it was if I'd eaten a vat of blue die. Instant behavior problems. Whoop-dee-gluten-filled doo. Puzzles are a child's toy for God's sake not the mark of a national and growing worldwide epidemic. Let's see, colon cancer. Intestines. Maybe they get a slinky as their "logo." I told you I was snarky.
I'm tired of symbols and awareness and acceptance as "enough" for us all. I want action. I want to protect kids from death by wandering. I want adults n the spectrum to find meaningful work. I want kids with Asperger's not to be bullied into suicide or rage. I want more things than Veruca Salt could ever have demanded on her very best day. And while I know in my head that there's a lot of great progress taking place - it's never fast enough for my heart when I'm in the thick of the chaos.
I went to a wedding today. Bella's Godmother married the love of her life - she's my age, which ain't young. We were high school roommates and college best friends and she was in my wedding. My naive, never been whacked with the bad things happen brush wedding. I was part of her family for many years. And seeing them all today - her elderly parents whose eyes still shone with love when they saw me; her older brother who dated my big sister in high school and his wife and adults kids; the nieces and nephews - scads of them in a large Boston Irish family - it made me incredibly happy to be reunited with them all.
And incredibly sad that in World Autism Day (fly a flag! spin something!) I had 6 hours of time away, via the courtesy of my wonderful Mom and Dad who watched the kids. Six hours that should have a been an overnight in Boston while my 16, 14 and 10 year old had a blast with Grandma and Grandpa going out to dinner and maybe a movie or bowling. Instead, my mother has bruises up and down her arms from our child who seems to have a large share of crab DNA. I raced off the boat, oh yes, the wedding was on a beautiful boat in Boston Harbor, and sped home. I'm aware. And now it's time to ACT. I'm lighting it up PINK PINK PINK this month. Screw blue.