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.


Sunday, November 3, 2013

Why I Knock

You know me, right? I've always completely avoided discussing any issue where there is the slightest chance of conflict. I feel uncomfortable telling people that they should believe something other than they do, especially people I don't know very well.

So the absolute hardest thing ever for me is exactly how I've spent much of my free time for half a year now.

I've been talking to strangers about politics.

I am spending all my free time walking around Boston neighborhoods (alone usually), knocking on the doors of people I've never met before and making them stop whatever important task they are doing so I can ask them to vote for John Connolly for Mayor.

The first time I went out, I held my breath at every door. If nobody answered, I exhaled with relief. If they did answer, and said they weren't interested, I apologized for bothering them, said thank you and went on my way. I didn't even try to change their mind. But about 15 doors in, something pretty awesome happened. The woman who answered the door said she didn't know much about John, and asked me a few questions.

Then she paused for a minute, looked at me curiously, and asked "Why are you doing this?"

All of a sudden, I wasn't nervous anymore. And I told her this story:
When James was 5, he was in his 3rd school in 4 years. The only reason he wasn't 4 for 4 was because we held him back so he wouldn't switch schools. Each time he switched, he lost half a year trying to just trying to adjust. The IEP team had mapped out his next move, and it meant another 2 schools in 2 years. Then he could stay for 3 years but would have to switch again after that. 
Our school district didn't have many inclusion pathways. It was kindergarten in one school, then 1st and 2nd in another. The kids for whom transition is the hardest are the ones who had to move the most.
I paused, thinking she was probably starting to tune out, but she was listening intently.
After visiting every inclusion school in the entire city, I found 1 in which James would be able to thrive, and I spent a year advocating to get him placed there. John Connolly heard what had happened and wanted to make sure no other family had to go through that. He held a Education Committee hearing on inclusion and encouraged parents to speak about our experiences. He used the hearing to passionately implore BPS to develop set inclusion pathways. 
And he didn't stop there. He had his staff members attend SpedPac meetings. He approached my autism moms group and asked if he could meet with us to learn more. He listened to us and asked thoughtful questions. He asked what he could do to help us.  
I'm out here today, I told her, because he is out there for all of us every day.
And then she hugged me. She told me that it meant a lot to her that I would share my story, and she understood how much it meant to me that he be elected.  She thanked me for telling her, and said she would make a point to learn more about him.

I've been telling my story since April, and every single person has had the same reaction as that first woman. And many have told me their own story of how John helped a friend, or returned a call immediately, or listened and offered a solution. As the year went on, that first knock turned from a moment of fear and apprehension into one of curious anticipation. Those strangers became neighbors, and talking politics turned into talking about how to make Boston a better place.

This is why I knock.

Election Day is in just 2 days, on November 5. For the first time in 20 years, Boston will elect a new Mayor. We have 3 full days to make a difference. If you can spare an hour, I'd love to have you walk with me and talk to our neighbors about making Boston better. Please join me!





Monday, September 2, 2013

Moment of Truth Monday - All Done

One summer before the kids were born, we went camping just about every weekend. At the end of the summer, a group of us were driving home on Labor Day and decided to stop off at a random lake along the road. 

We swam, played Frisbee, and then sat around relaxing and drinking a few well concealed beers.  I remember we weren't talking very much - we were just soaking up as much of the afternoon sun as we could.

Then all of a sudden, a friend looked at his watch, then stood up and said "Well, that's it. Summer's over." We declared him a "complete buzz kill", but we all knew he was right, so we just got up and gathered our stuff to continue the ride home.

Labor Day is a frustrating holiday to me. I put pressure on myself to get as much out of the day as possible, knowing it is considered the last hurrah before "real life" starts again, but as much as I try to suck out of the day, I can never fully enjoy it because I don't want to let go of Summer's freedom.

So today, after driving 1 1/2 hours home from our weekend trip and finally dealing with the school supply shopping I'd put off until the last possible minute, I was frustrated and felt the need to go to our pool one last time. The boys didn't want to go, but I convinced Johnny saying his BFF would be there and it would be the last swim of the summer with his friends. 

We were late, and his friend was leaving as we walked in. Actually, most everyone was leaving. I thought Johnny would be upset that none of his friends were there, but he seemed completely fine and jumped right in.

"Watch me do this handstand underwater Mama!" 

I'm going to do the obstacle course! Time me!"

"Mom, here are my goggles. I'm going down the waterslide!"

I watched him play happily, and I thought about how I had stressed to him before we went that it would be "the last time for the summer". 

I wondered why I felt the need to make sure he knew this afternoon had to be any different than all the others he spent playing at the pool. He clearly didn't feel any pressure to make a big deal out of it, he was just playing. Like any other summer day. 

Knowing that standardized testing, homework, harried schedules and all things completely out of his control are coming up in the next few weeks, why would I try to make him start thinking about anything other than enjoying summer?

So I turned my chair towards the afternoon sun, and sat back and read my book, and I let him go. 

About 1/2 hour later, he walked up to me and said "I'm all done Mom. I'm ready". 

I got up and gathered our stuff and we walked out together. Pausing at the front desk, we said goodbye and thank you to the staff we had seen almost every day this summer. And as we walked away, Johnny turned back one last time and announced to us all: "I can't wait for school to start Wednesday! It is going to be awesome!"

And THAT was a great way to end Labor Day. For both of us.