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.

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.


Niksmom said...

I.LOVE.THIS! Mazel Tov to you for getting away and recharging. :-)

kates said...

My thoughts exactly Kris! Hanging with the girls is like a slow release optimism tablet. If only it could be an appetite suppressant too!

krismac said...

Thank you Niksmom! Felt so good to just unwind and just be a friend. Amazing what a difference a little break can be. Hope you get one as well. Thanks so much for reading and taking the time to comment!

krismac said...

It wouldn't have been the same without all the cheese ;) Thanks for being there with me, and being there for me all the time!