He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.

This is James, and this is our story.

Wednesday, April 18, 2012

No Strings Attached

Another sock torn to shreds.

I found it while folding laundry today. Then I found another. That makes 5 this week, plus 2 pairs of pants in the last few weeks.

James is obsessive about strings on his clothes. If there is a tiny piece of string sticking out anywhere, on any piece of clothing, he needs to remove it. Immediately. If I am not ready with scissors to cut it off, he won't stop pulling it until it is completely removed.

It was hard enough to find socks without toe seams he could feel (yes, I was the one doing the victory dance in the boys' department at Target, thankyouverymuch). But my smugness went away after a few washes, when the strings started to appear.

More than a few times have I arrived at school in the morning to tell him it was time to get out of the car, only to see a sock with a newly pulled hole on one foot and a panicked look on his face. "You don't have another sock? WHY don't you have another sock? Now I can't go to school. NO, I CAN'T NOT THINK ABOUT IT! I'M GOING TO THINK ABOUT IT ALL DAY AND WON'T BE ABLE TO DO MY WORK!"

And I sigh, because I know he is telling the truth.

I tell myself that summer is coming - those glorious days of crocs, shorts and short sleeves. Less clothing means fewer strings to pull, right? Not having to wear socks is a reason to throw a party in this house.

And maybe, just maybe, if he doesn't have to remove a string for a few weeks straight, the obsessiveness will fade a bit and he'll outgrow it by Fall.

But until then, I'll be carrying a tiny pair of scissors for emergency string removal.

Monday, April 2, 2012

Raising Autism Awareness and Empathy - Together

I woke up this morning filled with hope and promise. There will be more understanding. More empathy. Buildings will be lit up in blue. There will be bright blue shirts and scarves, and lots of puzzle piece pins. Everyone will talk about the importance of research and understanding. Today is World Autism Awareness Day. People are going to get it.

But too many of them still won't, and all the blue lights in the world are not going to change that. Our trip to the grocery store this morning made that crystal clear:

He isn't being a brat because they don't have his cookies in stock. Now he doesn't know what he is going to have in his lunch tomorrow, and that scares him. My promise to go to another store and get them doesn't help, because he won't be there to see them go in the cart. He is desperately trying to hold it together, but this unexpected setback, as well as the realization that now he is going to be behind schedule getting to school and late starting his morning math because he has to try to pick something else out, something different than he has every day, is all completely overwhelming to him.

I know his crying is unnerving. I hear it in my sleep. I realize it is unexpected to see a 9 year old hyperventilating over a missing box of M&M cookies. Although I'm usually hypervigilant and try to diffuse potential meltdowns before they occur, this one took me by surprise too. I get that you just wanted to get your groceries and get out without drama. I did too. But now I have to try to console and reassure him while at the same time I feel like I need to explain this to you, and that is completely overwhelming to me. He senses that unease and it makes him even more anxious, and he cries harder.

I know you understand. If you are reading this blog, you know James. You have a James, or a Jane, in your life. You understand them. You go out of your way to help us parents every day, not just on April 2nd. You ask if you can watch the kids for an hour or two so we can get a break. You forward articles and stories you know are helpful. You applaud progress and show concern in times of challenge. You offer a shoulder and an ear when we need it. You are there for us, and we appreciate everything you do.

But what about the person in the grocery store giving us that look?

My friend wears an autism pin when she takes her boys to the store. She shouldn't have to make autism a fashion accessory on her shirt to avoid getting that look. We need to help her by changing that look from one of contempt to one of understanding.

We have to do it together. Reach one person at a time. Tell your own story about James, or Jane, and you can reach people who don't know them like you do. Show them a picture. Make them understand that these are people you love. Incredible people. Tell them the things James and Jane love to do and what makes them happy. If they know James before they run into him crying at a grocery store, maybe they will understand instead of getting annoyed. Maybe they will offer an understanding smile, or whisper a word of encouragement, and then continue on so I can focus on supporting my son.

It is going to take a lot of effort, but we can do this together. We need to weave understanding and empathy into our every day conversations so that individuals with autism spectrum disorder are fully part of our community and have the support networks they need and deserve. But it needs to come from all of us together, and it needs to be constant. Not just on the day with the blue lights. And not just from me during a meltdown, stressed out and trying to explain it while my crying son drowns out my voice.