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.

Thursday, November 28, 2013

The Monkey Who Hated Gaijin

It was the first Thanksgiving I was spending away from home. My friends and I had our first 3 day holiday since arriving on the island of Kyushu, Japan as conversational English teachers, so we decided to take our first real road trip together to Mt. Sakurajima, a very cool and very active volcano.

Since we didn't have much money, we decided to stay in a "Love Hotel". They were super secretive hotels all over the place that charged by the hour (akin to the 4 hour short stay at the Grantmoore on the Berlin Turnpike, just without the jacuzzi and champagne). They usually had names like "Hotel Liberty" or "Hotel USA" 

My favorite love hotel name of all time was called "Hotel 2 in 1".
A visit to a love hotel was an adventure in itself. It worked like this; You would drive through a giant flap (like at a car wash) and into a darkened underground private parking space. They thought of everything to ensure your privacy: you could even place a barrier in front of your car to hide your license plate. You pay in advance for the number of hours you intend to stay by putting money in a vacuum tube that gets sent to the office like a bank drive-through and then the tube returns back to you with a room key so you can walk directly up private stairs into your room.

Ideally, you would never have to see anyone during your entire check-in or stay, but if don't think the love hotels' usual clientele included threesomes of 21 year old American girls who can't read instructions written in kanji or speak or understand any Japanese. Inevitably, and much to our amusement, we always ended up playing charades with the incredibly confused love hotel office workers. This made love hotels a staple and a highlight of our travels during the year.

So after staying up late with giggling fits at "Hotel White House", we hit the road early the next morning to head to the volcano. We were winding down a road through a forest and saw a lone car parked on the side of the road. 

And then I spotted it.

"MONKEY!" I yelled, having become recently obsessed with the ones who swung limb to limb in my calligraphy sensei's backyard. I watched them with amusement while practicing the same words "bride" and "wedding" over and over again (Sensei said he wanted to make sure I got the most important words perfected first). Apparently I was bit slow to catch on to the technique as a left hander being forced to paint with the right because I swear I worked on those two words all year long.

We pulled over and got out of the car, and watched as the man fed a monkey by hand. I was entranced. I was watching someone feed a wild monkey on the side of the road in the middle of a forest in rural Southern Japan. 

On Thanksgiving Day.

The monkey was curious, and stopped begging for snacks to check out us newcomers. He didn't seem phased as he looked at my friends so we inched a little closer. As we approached, he seemed to notice me. Or more specifically, he noticed my hair. 
With my sister the night I left for Japan. 

My long, very blond hair. 

He shrieked at the top of his lungs, and ran up into the top of the man's car. Then he took a running leap.


Stunned,  I pushed him off.

Everyone started at me and my friends were laughing. I think one of them started to ask "what the..." but she never got to finish because the monkey had turned and beelined back to the top of the car again. 

I backpedaled quickly as he once more got a running, jumping, flying start and leaped across the air to land on me and SINK HIS TEETH RIGHT INTO MY FOREARM!

My friend screamed "It's your hair! The monkey hates blonds!" as we ran to get back into the car while the Japanese man was doubled over, laughing hysterically and yelling "Gaijin!" (foreigner).

So as soon as we composed ourselves, we took a detour to find an international phone so we could call our friends and family to tell them happy Thanksgiving and share our story about the monkey who hated Gaijin

And as much as I couldn't wait to go climb the active volcano (the entire reason for our trip), the love hotel and the wild monkey who bit my arm by the side of the road are the most vivid memories I have of that road trip, and they are a reminder that it's often the unscripted, unplanned and undocumented moments that are the ones we end up remembering and appreciating most. 

Happy Thanksgiving. I hope you enjoy ALL the moments. 

Saturday, November 16, 2013

Coming Back to our Neighborhood

I love James' school with my whole heart, and I love everyone who has supported him over the past 3 years. I can not even begin to adequately express the gift that James and our family have been given as a result of being part of this incredible inclusive community. I never anticipated having this opportunity in our large city school district and I've always felt like I won the lottery by receiving this placement. After years of having to advocate tirelessly and switch schools yearly, this school offered exactly what James and our family needed. Johnny has been on the waiting list for over a year and I've been eagerly anticipating having both boys together at this amazing school through 12th grade.

But James has been struggling with school more and more each year. Not THIS school, just school in general.

ELA ruins my life, he cries to me. I want to stay home. I can't go to school because I will be gone from you for too long. I feel sick. Johnny's school is closer. He doesn't get as much work as me. I want to move where there is no school. I can't breathe because I'm thinking about school. I feel sick in the car. I can't ride in it anymore, I need to get air. 

This is what he tells me every morning during our hour long drive to drop Johnny off at his school and then cross the city to James'. Every day I see him blink repeatedly to stop the tears as he gets out of the car to go into the building.

And every day my heart breaks for him and I wonder if it is all worth it.

So last week I stopped wondering.

I transferred James into a school in our own neighborhood. He starts on Monday. It is also a fully inclusive school and my friends who have kids there feel as strongly about their school as we do about the one we are coming from. I know we will have a lot of support from both the community we are leaving and the one we are joining.

But there will still be ELA (English language arts). School will still take up most of his day away from home. It is going to be a really big transition and there will be blinking to hold back tears. It is going to be hard at first.

However, I think it will get easier, and I know that knowing he is 5 minutes from home instead of 45 will make a major difference for James. I know that being able to have friends who live around the corner come to our house after school is going to be a game changer for him.

And that's definitely worth it.

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!