December 16, 2011

Occupy My House

We are the One Percent.

The One in One Hundred.

We are not rich, and we are not privileged. Not in a way the 99% understand, anyway.

We are the families of children with autism.

Most of the time, you may not notice us. Our kids' disabilities are often invisible. They look just like any other kid. Maybe even a little like your kid.

But you might not notice us for other reasons too.

You might not see us at the park, because we are afraid that our children will run away, that even one second of distraction could end in tragedy.

You might not see us at a restaurant, because our kids might not be able to sit still for a whole meal or eat very few things.

You might not see us at play dates because our kids don't know how to interact appropriately with other kids, or may get overwhelmed at new places.

You might not see us at school because we're on the other side, in the special education pick up line.

You might not see us at the grocery store because our kids can be overwhelmed by all the lights and sounds, or don't understand how to stay close to us even though they are too big to fit in the cart.

You might not see us at the mall because it is hard to change the diaper of a four year old in a public restroom.

source unknown
You might not see us with our spouses at nice restaurants or movie theaters because it is hard to find a babysitter we trust to keep our kids safe.

If you do notice us, it is probably because our kids are doing something you don't understand.

He might be giggling for no apparent reason, or bouncing in his chair. She might be flapping her arms or having a temper tantrum. He may not look at you when he speaks. She may not speak at all.

And sometimes we are so tired, because our kids often have trouble sleeping, or we lie awake at night worrying about their futures, that we don't have the energy to go anywhere.

Sometimes the one percent recognize each other when we are out, but despite our rising numbers we are still few and far between.

We love our kids, just like the 99% do. We are proud of them, and believe in them. We fight for their right to have a safe, accepting place in this world. But the world is a scary place for us one percent.

And so often we stay at home and surround ourselves with what we need to get by.

The right foods. The right toys (even if they aren't "age-appropriate"). A fenced-in backyard. Extra locks on the door. A long twitter feed where we can connect with the rest of the one percent.

And connect we do. So though it may be easy for the 99% to forget we are here, just try crossing one of us. Or telling us our kids can't do something. Or denying them an education. Or respect.

Try it and you will hear the voices of the one percent come together from around the world. We are loud and unafraid. We stand by each other. We help each other by telling our stories and sharing in the joy and sorrows.

We occupy our homes.

We are the one percent.

Update: The latest statistics show autism rates at closer to 1 in 88, higher for boys. 

I don't actually know the number of families with autistic children, so the numbers are probably a little different. Approximately one in one hundred and ten children are diagnosed with autism, but many families have more than one child diagnosed. So I'm approximating. And of course, there are many other types of special needs families who experience some of the same challenges and isolation. Also, the above are just examples. Every child with autism is different, and I'm not intending to represent everyone.


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