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.

Monday, October 24, 2011

Tearing Down the Wall

Yesterday was the first day that there was a hint of winter in the air. So, slacker mom that I am, I finally decided to unpack the pool bag. It was filled with typical things- a few empty bottles of sunscreen, kids' goggles and some toys. While I was taking them, out, I realized what a huge thing it was for me to be doing.

We've never had a "pool bag" before. Filled with typical things.

All the memories of this past summer, and of the last 8 summers, came flooding back, completely overwhelming me.

When James first started Early Intervention and was diagnosed on the autism spectrum, I was sure I could handle it all, and it wouldn't change my parenting style too much. I would keep doing all the same playgroups and would keep him in the world, surrounded by other kids. 

Soon though, I found myself cancelling trips to the aquarium, the children's museum, even the zoo around the corner from our house.

I started building a wall around us with each cancellation. With each "no thanks, I don't think so", the wall got higher and higher. By the time James was 8, I had created a fortress. I kept my boys inside it as much as I could. Summers were spent in the fenced in front yard with an inflatable pool. Outings were limited to therapy appointments and visits with other ASD families.  Always controlled and always with an escape plan in mind.

Poor Johnny was stuck with us even though he desperately wanted to get out. I had to say no to the playdate requests, because I knew I couldn't send him without his brother, and I knew his brother couldn't handle it.

I started to hate summer, and felt horribly guilty for feeling that way. What kind of mom was I that I didn't want to spend those supposed carefree days with my young sons, without the limitations and rules that go along with the school year?

We were becoming prisoners inside that fortress, only I couldn't see it. All I could see was the pain and the fear in James' eyes when confronted with something unexpected outside the wall, and I fiercely wanted to protect him.

This past summer, though, I finally started to break down the wall.

Some friends belonged to a pool club that was totally geared towards kids our boys' age. They suggested we join because Johnny had visited and loved it.  I was hesitant.  It was more like a water park than a pool.  It was huge, and there were so many kids.  I was sure it was going to be an incredibly expensive train wreck, but we decided to try it out, just for Johnny.  As summer got closer, I started dreading it, again.

The first day we went, I watched as Johnny took his brother by the hand and led him around the enormous wave pool.

A few days later, I watched James play with a friend. Splashing. Dunking. Chasing.

The second week, Johnny was scared of the obstacle course and was asking for my help. I got into the pool to hold him steady and heard a friend yell "Hey Smother!  Get outta there!" I laughed and got out to go join my friends, while I watched Johnny struggle in frustration. The next day he did the whole obstacle course. 30 times.

In August, I actually played tennis while my kids were in the wave pool. I don't know whose life I was leading, but it wasn't the one I had for the past 8 years, walled up with my boys away from the world, ruled by autism and anxiety.

We were the first ones in on our last day there, anxiously awaiting the arrival of a new friend and her sons. The pool manager approached James and handed him the keys to the pool. He instructed James to go around to the other side of the wave pool, put the key in the lock box and turn it.  I started to intervene, and I remembered the "Smother" comment. I backed off and held my breath a little.

I watched as James gave me a nervous look and then tentatively walked around the pool by himself. He fumbled and found the key hole, and struggled to turn the key. And he looked up to see the waves start rolling into the pool. He smiled. His brother cheered.

I turned and went to the desk to sign up for next summer.

I know we are always going to face obstacles and challenges, and some times are going to be very, very tough.  But going through the pool bag yesterday, I realized how far James has come over the past 8 years. 

I also realized how far I've come. 

I think now I'm going to be able to tear down the wall, day by day, and let the outside world in.  He's playing soccer this fall, and we are going to try skiing this winter. And for the first time in 8 years, I'm already excited about spending next summer with my boys.

I'm going to keep the pool bag visible though, just for those days when I need a little extra help.

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