It’s here again, isn’t it?
The day for which I am so grateful, yet from which – year after year- I just want to hide.
It’s a day of hope and promise and grandiose events. A day on which buildings across our nation and around the world are set ablaze in blue light. A day on which Liam Niederauer rings the opening bell of the New York Stock Exchange. A day on which the United Nations recognizes our community and the epidemic proportions at which it is growing.
These are wonderful and meaningful events.
But a UN resolution won’t tell your child’s story to your aunt – the one who says you’re ‘just too lenient with that kid’ or that a week with her ‘would be enough to set him straight’. Ringing the opening bell of the New York Stock Exchange won’t tell your son’s story to the kid down the street – the one who calls him names and sends him home in tears when he doesn’t understand the unwritten rules of the game. The Empire State Building won’t tell your daughter’s story to the lady on the supermarket check out line – the one who sneers at a meltdown because she has no idea what she thinks she sees.
Events can’t tell our stories.
But we can.
Nearly two years ago, Michael Savage said the following on his nationally syndicated radio show.
“I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’”
It stung like hell when he said it. Two years later I would have hoped to God that we’d moved far past that kind of ignorance.
But last week, a Mommy blogger wrote what she thought was an amusing anecdote in which she ridiculed a four year-old little girl who could very well have been mine. Or yours. It was painfully obvious from her description that this little girl was exhibiting autistic behaviors. But that wasn’t what the blogger saw. What she saw an over-indulged, spoiled brat.
She has since taken the post down and has issued a what appears to be a heart-felt apology. But just as Michael Savage’s words did two years ago, this woman’s post showed us in no uncertain terms just how much work we still have to do in order to create a world that shows compassion to our children.
So while the buildings are lit in blue and the world stands at attention, let us tell our stories. We don’t have to tell them on television or on stage or online. We can tell them at our schools and in our book clubs and in friendly chats with neighbors.
We can tell our stories anywhere that we are. And we must. Because if we don’t tell the aunts and the kids down the street and the ladies at the supermarket and the blogger at the library what autism really is – what it means to each of us – who will?
So what do we tell them? Two years ago, I wrote the following.
We tell them what we live.
We tell them what it’s like to see the world in too bright Technicolor. We tell them to think back to a time when they just got out of the ocean and their eyes were full of salt and they looked directly into the sun. We tell them that’s what it can be like to walk into a classroom.
We tell them what it’s like to hear the world in too loud, too chaotic Dolby digital sound with no volume control. We ask if they’ve ever had a migraine. When they did, did they ever turn on their stereo and their television, both on full blast and then have three people shout at them from different directions? We tell them that’s what it can be like to walk into a restaurant.
We tell them what it’s like to sit in the middle of a roomful of people talking and to not be able to understand a single word they are saying. We tell them to imagine what it would feel like to be a native English speaker who has a rudimentary knowledge of Spanish trying to follow an argument in heavily accented Castilian. We tell them that’s what it can feel like to be at a birthday party.
We tell them what it’s like to be completely overwhelmed by everything around them – to feel like they’re standing in the middle of the track at the Indy 500 and the cars are coming at them at full speed. We tell them they too might lose their facility to calmly ask for help when they have no idea what’s happening next. We tell them they’d likely panic and scream and curl into a ball. We tell them that’s what it can feel like on a soccer field.
We tell them what it’s like to taste and smell the world so vividly that they can’t tolerate it. We remind them what it feels like when they have the flu and every smell sets off their salivary glands and their gag reflex. We ask them, what if, when they feel like that, someone hands them a pot of curried meat? We tell them that’s what it can be like to sit down for a meal.
We tell them what it’s like to lack the language to express your most basic needs.
We tell them what it’s like to be so sensitive to certain sounds that you live in fear of car alarms, sirens, coffee grinders, garbage disposals, horns and any of the places that you may have heard any of those sounds before.
We tell them what it’s like to try desperately to interact with your peers, only to be rebuffed time and again because you can’t manage the most rudimentary conversation.
We tell them what it’s like to be so oversensitive to touch that a hug can be torture.
We tell them what it’s like to yearn for a friend. Just one.
We tell them what it is like to live with autism.
I can’t speak for you. Your experience is different than mine.
So you need to tell them.
Tell them what it’s like to tear yourself apart every day as the parent (or aunt or uncle or grandparent or cousin or colleague or friend or friend of a friend) of a child who lives with these challenges because you don’t have the tools to make it better.
Our children need awareness. They need acceptance and encouragement and understanding. They need patience and compassion and love.
They need us to talk.
So please, use the day. Talk about it. Blog about it. Tweet about it. Write about it on Facebook. Use whatever tools YOU have in your arsenal to get the word out.
We CAN change the world for our children.
One conversation at a time.
ed note .. If you are just entering this world, I’d urge you to read the following. It is a letter that I wrote to a friend whose child was in the process of being diagnosed. I hope that if nothing else it will show you that you will find your way. And you are NOT alone.