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, September 26, 2012

The Waiting is the Hardest Part

I check my phone for the time. Then I check the bars to make sure I have reception.

I send another text to my friend Sheri watching my boys at the pool. How are they? Is James OK?

I'm sitting outside the hotel in my car. It's 95 degrees out. I'm blasting the A/C. I turn up the music and try to play a game on my phone. I check my texts.

I'm frustrated at myself. What was I thinking? I should have stayed with the boys. I should have just brought them with me when I went to go pick up my friend who is visiting. I thought it would be a quick round trip and I would spare them sitting in Boston traffic, but his one meeting turned into another and now an hour is turning into two. That is a long time for James to be at the pool, especially without me. What if he has an anxiety attack like he did last week? What if it is even worse than last time?

I text Sheri back. Did I tell you that he has to know where you are? That if he doesn't see you when he decides to look that he will panic and think you've left him? I know full well he is in good hands. He's been at her house countless times, and now he is at a familiar place with her and her son, and my friend Patty and her daughter. Autism mamas both of them. My support group. My village.

But I still worry. Familiar doesn't mean safe. Not to James. And this is too soon. Something is going to go wrong.

I try to think about how psyched I am to see my friend. The visits are few and far between. We get to hang out with my family all afternoon. As soon as we get back that is. My mind goes back to the day at the pool when I was saying goodbye to someone and James couldn't see me. Two minutes later I saw him with the manager, crying and trembling. "I thought you left me" he cried into my shirt.

I turn off the A/C and roll down the windows. The hot air doesn't bother me because I feel like I can't breathe anyway. It actually makes me feel better to be physically uncomfortable too.

Yes, we'll have fun together tonight. If James is OK.

I know how lucky I am. Lucky to be able to leave him with a friend for a few hours. Lucky that James can tell me what is so upsetting and ask for help. But although I recognize how blessed I am to have these luxuries, it doesn't seem to make it any easier. For either of us. And it doesn't make him less affected by autism than anyone else who is on the spectrum. 

James doesn't know what is going to cause him to panic. He can't determine what is a real life threat and what is an impossibility. Once the panic sets in, he can't stop it from completely suffocating him. I wrote about his fears here in this post last year. Nothing has changed since then.

I never stop thinking about him and worrying about when the panic is going to take hold. He can go for a week without an anxiety meltdown, only to have it come out of the blue with the kind of force that takes us both down with a single blow.

And it is back. With a vengeance. The incessant worrying at bedtime about every sound he hears conjures images of airplanes flying into the house and fires trapping him in his room away from us. He can't make his mind quiet from the fear. When he wakes up in the middle of the night every night, these are the images that haunt him. He is alone. He is trapped.

So we lay awake together each night, me quietly reassuring him that he is safe and nothing will happen to him. That I will protect him always. And he finally falls asleep, exhausted and drained. I lay awake, worrying enough for both of us.

I hear from my friend. "I'm sorry" he says. "It might be another half hour". He shouldn't be sorry. It was my idea to come down before he called with the hopes that he'd be done early.

I take his advice and go into Nordstrom to wander around. I walk past the cosmetic counter, baffled by the well dressed women sitting in chairs, gabbing while they try on different shades of blush and compare beauty secrets. How do they make it look so easy? Why aren't they rushing through their makeovers to get back to their kids? I go into the shoe department. I can handle that. I see a cool pair of sneakers and am just about to ask for my size when I see 2 other people waiting in front of me for a salesperson. I can't wait that long. I check my phone again.

I go up the escalator and start wandering through racks of clothes. Touching each piece as a I walk by, looking straight past each one. I don't realize I've stopped and am holding up a shirt until I hear a distant voice "Excuse me?"

Confused, I look towards my phone first. It doesn't sound like it could have come from there, but I'm kind of in a fog. "Sweetie?" I look up and there is a woman in front of me.

"I don't think you noticed you are in the Plus sized section. I think you should be over in Misses". I look in the direction she is pointing. I nod. Give a stifled laugh.

I put the shirt down and start moving in that direction, just to please her. I walk straight through and back out to my car. I think about all the times I've been abruptly pulled back into awareness from my fog.

By the time my friend calls to tell me he is done, I'm already back at the hotel, waiting in the circle at the hotel. Ready to get back home so I can be there to calm the fear when it returns.