The Blue Puzzle Piece
I have gone back and forth about whether or not to mention this here, as I would like this site to remain politics-free. However, I think this is important.
Don’t hate me, but I can’t deal with Autism Speaks anymore. The blue puzzle piece just doesn’t speak for us.
There are lots of reasons behind this, but rather than get into them here, I’d like to direct you to Shannon at PITAUP, who does the job quite nicely here.
There’s also an awesome group on Facebook where you can go to learn more – Help Tell The Truth About Autism Speaks.
Basically, I’ve been looking at this whole autism thing from the viewpoint of a parent. My attitude changed when I thought about how Jack will present himself as an adult and what he’ll want out of life as an autistic individual. I am his champion, his advocate and his biggest fan, and that’s a job I don’t take lightly. I can’t support any organization that doesn’t recognize that what makes Jack different makes him amazing.
I will, however, wear their free t-shirt while cleaning. I’m thrifty like that.
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I Believe…
… autism has turned out to be quite a good thing for our family.
… my children are constant reminders that I should never assume anything.
… going to playgrounds with my children is much more fun now than it was when I was just babysitting kids in high school.
… Target is the greatest store ever. Ever. Really.
… shopping Target clearance is as fun as anything else I could find to do with some free time.
… chocolate covered pretzel goldfish crackers are amazing. Especially when I get them on clearance at Target.
… scrapbooking is a lot more exciting in theory.
… all natural candy is so wonderful my kids will never believe they’ve been deprived by not having the other stuff.
… someday my kids will experiment with non-natural candy and foods, and they’ll see why I’ve tried to keep them natural. (I also believe they’ll make wise choices after that, but I could be very, very wrong.)
…my children were each sent to me for a different purpose: Kieran, to be my mama’s boy; Lennon, to teach me patience as he defies gravity in some way or another; and Jack, to help me realize that I have more strenth and compassion and love and humility than I ever thought possible.
… laughter is the greatest gift you can give your children after your undying and unconditional love.
… it’s probably a good thing they only make those chocolate covered pretzel goldfish at Christmas.
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Did you know you can find some awesome all-natural candies on Amazon? Check out the AIT Amazon store on this site – I’ve put them all conveniently in one place!!
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I seem to have violated a social more here. Evidently, and unbeknownst to me, you’re not supposed to talk about autism. And in no way, shape or form are you supposed to laugh about it. Autism isn’t funny. It’s devastating. It’s horrible. It’s a tragedy.
I beg to differ, on all counts.
To begin with, I refuse to be quiet about something that has touched our family. Pretty much everyone knows my husband was adopted, and the circumstances surrounding his adoption (it’s a pretty interesting story, actually). I don’t hide the fact that I was married before. I call it my “training wheels” marriage, and that experience helped me be the better wife and partner I am today. It also gave me better perspective in choosing a proper spouse. These are life experiences that have shaped us as a family.
But wait, you say. Adoption and divorce are events, not afflictions.
Ok, I have terrible eyesight, and have had glasses since I was 18 months old. David is the palest person on the face of the earth, and actually appears purple in some beach photos. Jack has autism.
How can I compare bad eyesight and a lack of skin pigmentation with autism? It’s easy. Each one is something we were born with. I can’t change my eyes any more than David can change his skin or Jack can change his brain. I wear glasses and contacts, David wears sunscreen (and I use Photoshop on our beach photos), and Jack asks questions and looks at things a little differently than the rest of us. I wouldn’t mess with his brain any more than I’d mess with my eyes (and I have some funky eyes that can’t be corrected with surgery).
Still, there are those who insist that “we just don’t talk” about things like autism. Why stigmatize the child with labels? Why put up additional walls? It makes me think of the wonderful Neil Simon play and movie “Brighton Beach Memoirs,” where all afflictions and diseases are whispered. Oh my, she has cancer. Goodness, he had a heart attack. Ooooohhhh, he has autism.
I argue that whispering about something makes it worse. When my mother had stage IV breast cancer, we had several rules. First, you do not capitalize breast cancer. Do not give the beast any more importance than it deserves. You will never see me capitalize autism unless it is part of a title or the first word in a sentence. Second, you do not whisper about breast cancer, you roar about it. I will not whisper about something – anything – that affects my child and my family so profoundly. I will roar about it. Here, there and everywhere.
I will scream it from the highest mountain, I will use the word in front of my child when I talk to you. I will not shelter Jack from the thing that makes him different and special, nor will I shelter you. Some people are uncomfortable when I talk about autism, especially with Jack present, but I maintain that is not my problem. It is not Jack’s problem. That is their problem. Anyone who is uncomfortable about autism – or any affliction, disease, disorder, etc. – needs to take some time for self-reflection. I’m not going to hit the mute button to make someone else feel better.
Autism is not a tragedy for us. It is not devastating or horrible. I won’t lie and say I wish my child didn’t have to deal with autism and all of the drama and challenges it brings, nor will I deny that we were crushed when we got his diagnosis. But that feeling passed quickly, and we moved on. And we keep moving on.
And you know what? Autism is some really funny stuff. We are a happy family and we laugh every day. I want Jack to know that the thing that makes him different can bring him as much joy as frustration. I want him to read this someday and know that the challenging times were good ones for us.
I want him to laugh, and I hope you do, too. It’s ok. We’re not whispering about autism, we’re roaring.
With laughter.
Autism. In your face.
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How do you deal with people who think you shouldn’t talk about something like autism?
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Every parent has encountered it. From the time you first venture out to the store with your brand new baby, people around you have something to say about your ability to raise it.
“That baby really needs some socks.”
“Why don’t you turn him around in that thing so he can see the world?”
“He needs a hat! It’s cold/sunny/misting gently out!!”
The “helpers” tend to fade out as the children get older, except those hardy few who will insist they know what’s best for your child in any given situation, especially if said child is misbehaving. Or appearing to misbehave. Or breathing.
Add autism to the mix, and let the fun times begin!
If you’ve ever taken a 3 or 4-year-old to the toy section of Target, you’ve felt my pain. There are buttons to be pushed, wheels to be turned, horns to be blown. And invariably, older citizens to irritate. One would assume that, being in the toy section, there might be actual children present. And, in the presence of a mind-boggling assortment of toys, said children will be on a rampage to absorb every bit of fun to be had before getting dragged along in search of a more perfect popcorn popper (true story).
We must have some sort of cranky person homing gene, because every time I let Jack (or Lennon, for that matter) have their way with the toys, one or more shows up. With a stern look. Or a disapproving nod. Or, thank goodness, advice.
I have been told my child needs a spanking. That he’s out of control. That if he can’t be responsible enough to stay with me and not run away, that I should have left him at home (obviously with my high-priced nanny, this being Los Angeles).
Just yesterday, one helpful man pointed out that I had said Jack’s name “about a hundred times.” Why thank you, sir, I hadn’t kept count. I was more concerned that my child might escape my sight and be kidnapped while he was counting how many different kinds of cars were on the shelf. Clearly my priorities were askew.
My favorite recent encounter, though, was during the glorious Target 75% off toys sale (one of my most hallowed holidays). By some stroke of luck, I only had Jack with me. This is a “grab what you can get super fast because it’s going to be gone if you look the other way” sale, so I didn’t really want to be chasing him all over the store. Amazingly, there was a whole shelf of Little People amusement parks for him to, well, amuse himself with. He sat himself down on the floor with a ferris wheel and played the music. Again, and again, and… well, you see where this is going.
I was having a fabulous time with my one occupied child. That is, until I realized that an older woman across the aisle in iPods and iPod accessories was trying to get my attention. She politely informed me, from about 50 feet away, that my child was annoying her by playing with this toy repeatedly, and that I really ought not to be letting him play with a toy I had “no intention of buying.”
I politely responded that if she was annoyed, she should probably move to another part of the store. You know, away from the TOYS.
Nevermind that the amusement park did indeed come home with us, it’s the principle. If I have happened across the one magical thing that will keep my child focused for more than 30 seconds, I’m going to seize upon it. If that annoys you, well that’s your problem.
Especially if you’re on the other side of the store.
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What “advice” have you been given while out with your children? Have you ever attempted to “educate” someone who’s given you unsolicited commentary?
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