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.

Saturday, January 28, 2012

Fancy Cars

"What's that car, Mom? Is it fancier than a Lamborghini? is it fancier than a Maserati? Is it fancier than a Ferrari? A Mustang? is it fancier than a DeLorean? Corvette? What's the other one? The one they have in California? Oh yeah, the Hummer stretch limo?"

The questions come furiously. Quickly. The same questions all the time. No matter how many times I answer them, they come back.

It's only 8:30 am. I've been in the car for 1/2 hour after a frenzy of trying to get them ready for school and out the door on time. I'm still tired.

There is barely any time for me to remember the answer I gave yesterday. I wrack my brain, trying to give myself some time to remember the visual list I have in my head of the order of Fancy Cars, but I can't. My brain doesn't work like that, and I am exhausted from trying.

His brain does.

He collects information and catalogs it. He remembers all my answers. ALL OF THEM. If I get them wrong he tells me.

I try to take a sip of my coffee at the red "What about that car? What is that? Have you ever seen that car before? Is it fancier than a Lamborghini? A Maserati?" light.

I don't remind him that we've never seen a lot of those cars on the road, only at the car show. It doesn't matter. These are his benchmarks. He has to go through his list.

Asking him to to be quiet is not an option. Only a few years ago we were begging for this. For him to be interacting. Seems like just yesterday the trip included him screaming to go a specific way, only for "blue house-blue house-blue house-brown house-brown house-brown house-black house-black house-black house".

If there was traffic, or if I had to go a different way, it meant a meltdown.

I remember those days every morning, just when the ride to school across the city starts to get to me. And then I smile and get ready.

It's my turn.

But just before I go, I take a big gulp of coffee and remind myself to actually make a real, printed list for the next ride so I don't get the answer wrong.

"James! Do you see that blue car coming up? It is SO FANCY!"

Friday, January 20, 2012

Lost and Found

My friend wrote a post last week that I haven't been able to stop thinking about. You can read it here. I've read it at least 20 times and keep trying to comment on it, but then delete the comment each time.

The comment I so want to leave is "Exactly".

Before I was an autism mama, I was a soccer player. A landscape designer and gardener. A scuba diver, camper and snowshoer. A play-pool-at-a-fun-dive-bar friend.

One day I was all those things, and then the next I just wasn't.

Because starting that next day, it was 20 hours a week of therapies. Of endless waiting rooms. Of overwhelming paperwork and IEP meetings.  Of pouring over books and websites to learn everything possible I could think of to help my child, while at the same time trying to actually take care of my child. Both my children.

Those needs are unrelenting. They won't wait for a coffee break or a private shower. They certainly don't leave time for a Doctor's appointment or gym visit. I felt selfish thinking about doing such things, because my children needed me to do things to help them. I was too tired to do them anyway. Why bother adding more to my list of places to go and things to do? I convinced myself I'd do something for myself when things calmed down.

Things didn't calm down.

Autism took over my life, and all those other bits that make up who I am got buried. Buried so deep I didn't even try to find them anymore. After awhile I just stopped thinking about them.

They were long lost, and I felt like I was losing myself.

I realized I needed to find some of those things, the ones that made me feel good about myself. Luckily, that realization came the same week I was to go away on my first girls' trip in over 15 years.

We went to a friend of a friend's for a night down the Cape. 12 of us. All moms of kids with special needs. All moms who needed a break, to relax. To breath. To laugh.

This was my Facebook status update on Saturday night:
Playing pool in a dive bar in P-town. Life is good. And amazingly familiar...
And then, Sunday morning we all just sat around together in the living room in our pajamas, drinking coffee and telling stories. And laughing.
I felt like I could breath again. I couldn't even believe the difference it made, just to get away and be myself again. Just to hang out with friends and not be on guard. To find that play-pool-at-a-fun-dive-bar part of me that was lost. In bringing that to the surface, I feel like I found where all the other bits of me have been hiding. 
5 days later, I still feel renewed. I'm pulling from the energy I got from being with my friends.
I know I'm not going to be doing all those things I used to on a regular basis. And I'm OK with that. My life is so different than it was way back then. I wouldn't change it with anyone in the world. But if I can remember those things and how they are also part of who I am, then I can pull them out when I want to. When I need something to draw strength from.
I made that doctor's appointment. I called a few people about doing their gardening. I'm going to the Flutie Bowl Monday night with these same friends.
I'll do it little by little.
Note: The women from the post I linked above are calling this The Year of the Oxygen Mask. The name couldn't be more appropriate. We need to make sure WE are healthy - physically, emotionally, and mentally, in order to be able to help our children.
The Oxygen Mask Project website tells stories from parents, like you and me, who are taking steps to make sure they take care of themselves. Visit there to get ideas or strength. 
There is also a Facebook page where you can get support and cheer each other on. It is a place where you can tell someone you took a walk and it felt great, and you will be understood and applauded. It is a place you can simply write "help", and you will receive ideas and encouragement from people who get it.
You can also find support on twitter by following @OxygenMaskProj and by using the hashtag #yearoftheoxygenmask.
I know it is hard to make changes if you are doing it alone. Please tell someone if you are struggling or feel lost. Do something for yourself. You'll be amazed at what a difference that something can make.

Thursday, January 5, 2012

I Resolve

I've been struggling more than usual the last few weeks. Actually, I've been out of sorts since summer ended. I know there is something I need to do that I'm not.
That in itself is nothing new. I'm a bit of a slacker. I've never had aspirations of grandeur, it has only mattered that I be happy and with the people I love. That has always been enough.

But I don't feel like I am the best mother/ wife/ friend right now.  And I don't understand why. If I want everyone around me to be happy, and I know what they need to become so, what is stopping me from doing whatever I can to I give it to them?

I'm the mom of a child with autism spectrum disorder, sensory processing disorder and severe anxiety. I know he needs structure. I know he needs routines. I know he needs his areas to be free of clutter and easy to navigate. I know he doesn't like surprises. Yet I can't get my act together enough to give him what he needs. In his own home.

My other child has some very similar and sometimes slightly more confusing needs. I'm still trying to figure out how best to help him navigate the world, and it is incredibly upsetting to see him get so frustrated - at both himself and the world around him.

I want to get out of this rut. To be healthy and energetic. To be productive during the day so I can spend quality time with the kids when they are home. Instead I wander around the house overwhelmed all day and then look at the clock, realizing that I got nothing done.

Another day wasted when I could have accomplished something to make our lives better.

Then all of a sudden the boys get home and the day is full of transition difficulties and homework struggles and "why doesn't he have as much homework as me" and "I don't want that for dinner" and "why did he get more time to play" and I seriously think my brain is going to explode so I get a glass of wine so much earlier than I planned and I drink it much more quickly than I should because it is only 5 o'clock and Tony won't be home until at least 7.

See how exhausting that is to read? There should be pauses. periods. At least a comma to allow a deep breath and gathering of thoughts that make sense.

That is how I feel a lot of the time. No commas.

My family needs me to make some changes. I know that. James made everything crystal clear yesterday when he tried to get a cookie out of the jar on the counter and knocked things over that were stacked in front of it, because I didn't clean the kitchen as planned.

He lost it. "Why is there so much stuff? There isn't supposed to be stuff in front of the jar! I can't do it like this. You are supposed to move the stuff!"

And he was right.

I know it is just a cookie, so it might sound a bit ridiculous if you don't live in the world of autism and SPD and anxiety. But it isn't at all ridiculous in my world. It is what he needs in order to help him get through a day that is filled with uncertainty and surprises. If I know he needs a smooth transition after a difficult day of holding it together, and all I need to do is clear a path to the cookie jar and I don't do it, then that is a pretty big fail.

So here is my resolution for this year. I have no idea if it will work or if I'll even stick with it, since I've blown off every other one I've ever made in my life. But this one isn't for me. It is for my family.

I'll try, one bit at a time, to get things organized. To get my mind organized.

Clear the clutter. In my house, but more importantly, in my head.

I'm going to try to write about what I'm going through, since that seems to help me organize my thoughts. I'll try to explain how things got this way and where I want to be.

And then I'll try to get there.