can you hear me now? is this thing on?

 

 

“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.’”

- Michael Savage, radio host

 

Angry?

Me too.

 

So what do we do?

Do we sit and wallow in it?

Sure. Sounds like a good plan.

I’ll give you a minute.

Wallow away.

 

Done now?

Good.

 

Now it’s time to do something.

What do we do?

Glad you asked.

 

We talk.

 

We talk to anyone who will listen.

We educate the world about our children.

We get on our soapbox and we talk.

We scream if we have to.

We find a way to be heard.

 

Someone said to me not long ago that she kept her child’s diagnosis hidden to protect him from ignorance. With all due respect to her, I choose to protect my child by battling the ignorance head on. It’s the only fight I think I can win. Besides, I’m too loud to hide.

 

So what do we tell the world? What do we tell the Michael Savages who would belittle and berate and taunt our children?

 

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.

 

There will always be idiots in the world. There will always be people who will say stupid, insensitive, careless, incredibly destructive things.

 

But there will also be those, like you, who are willing to take a deep breath, stew for a minute, and fire up the megaphone.

 

I’ll see you out there. Look for me. Mine’s the third soapbox to the left.

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11 thoughts on “can you hear me now? is this thing on?

  1. This jerk left me furious and shaking and I don’t usually go there. I’m on my soapbox too!!!! Education for the public in general is sorely needed.

  2. Glad you’ve got your megaphone out because you are an amazing voice. Thanks for painting such a clear picture of what it can be like — from a child’s perspective as well as a parent’s. I think the letter from the woman on my blog is yet another beautiful voice. We won’t stop talking!

  3. I’ve worked with children with autism and other related issues. This is spetacular. We need an army of these voice — both eloquent and angry, both timid and strong, both fearless, brave and afraid. Thank you for the words you write.

  4. Hi, Jess. Here’s my trick. I wear only what “look” like platform shoes. A soapbox on each foot at all times. Savage has been cancelled on Mississippi stations – others may follow.

    Kim

  5. WOW! This is a great soapbox. I wish I had the words to say it as well as you did. In our home, we have Sensory Processing Disorder not Autism, but so much of what you wrote hit home. I would love to have every teacher read this, every person I run into in a store, even my well meaning family and friends. Maybe I will post it is my home for those days that I forget what my little girl goes through.
    Thank you for giving a voice to those that need one.

  6. Your voice is so clear and your words so powerful. I know this is an old post, but after stumbling upon your blog I have become rather addicted to it and that means I have started from the oldest post and have been working my way through up to the more recent posts. Your words have the power to reach so many people and I would like to use them for a bulletin board in my dormitory for the April board which I have volunteered to design. I will be doing it in honor of Autism Awareness month which means lots of blue and puzzle pieces and autism facts but your words would really impact some of the girls I live with. Based on your posts I am sure you would not mind my using your words to share with them but I would like your permission none-the-less. You have two amazing girls Jess, you are so blessed, and as your readers we are blessed to learn from them through you. Thank you for your words.

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