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, July 26, 2012

Dream Day at Fenway

James tried to play baseball in our neighborhood little league this past Spring. For exactly 1 practice.

I only saw the last 5 minutes of the practice and knew that continuing would be emotionally disastrous, so pulled him from the team. When I told the coach, he said he "would have tried to work with him, but maybe it was better that I pulled him". I was heartbroken, but was still determined to give James a chance to play baseball with his friends.

So when I heard that CVS Caremark All Kids Can was coming to Boston to create a "Dream Day at Fenway" for children with disabilities, I called my autism mama friends and we made our own team official. An inclusion team of autistic kids and their siblings that we called the Boston Spinners.

The opportunity came with some sad feelings. I'm lucky to have such a supportive autism village in my actual village, but I'm acutely aware that there shouldn't be that many children in my neighborhood with autism. My D'MAC (Determined (sometimes Drinking) Moms of Autism spectrum disorder Children) group is so big that not everyone on our "team" could participate, but ALL of our kids deserved this opportunity.

The easiest part was choosing our Coach. Boston City Councilor-at-Large John Connolly has done more for our families and our children than anyone else I know in this city. He has become our Champion and our friend. When he meets a mom with kids who have autism and feels isolated, he reaches out to us. He continually stands up for our children, all of whom are in the Boston Public Schools. As Chair of the Education Committee, John gives a voice to our families and children who don't feel like they have one.

The day was an absolute Dream Day. We had Fenway Park almost all to ourselves. We got to hang out in the Sox Dugout and go behind it into a hidden batting cage, as the incredibly charismatic and patient Sox batting coach Dave Magadan gave the kids some well deserved attention and batting help. Then we got to walk OUT ON THE FIELD and touch the Green Monster (something everyone who has ever been to Fenway has wanted to do!). Sadly the Sox are so far down in the standings that we were actually standing in front of our record while taking photos, but the kids each touched "Boston" on the wall to give us some luck.

The kids (and parents!) were already thrilled, but the day wasn't close to being over. They all got to hit pitches thrown by Coach Dave on the field! Watching the kids see the balls they hit go into the infield was amazing. Hearing them talk about how far they hit it was even better. D, for whom the 95 degree heat was an intense problem emotionally (totally get that!) ended up giving a play by play about his batting session: "No, that wasn't a home run...it was a triple"; "now that was a home run, see how far I hit it", "foul ball!" (I'm tempted to try to introduce him to Joe Castiglione, beloved Sox announcer and fellow Colgate graduate.)

Coach Dave told my James he was a "low ball hitter, and hit just like Big Papi" and James beamed. He had no idea what a low ball hitter is, but he sure as heck knows who Big Papi is, so he knew what a huge compliment that was.

During lunch in the dugout, Wally paid a visit to sign autographs and pose for pictures (Johnny Drama was hiding in the dugout, but James bravely went up and shook his hand as long as I promised I wouldn't take pictures, which I said "of course" as I instructed my friend to snap away ;) The first part of the day ended with a great tour around Fenway, checking out the Monster seats and asking questions D'MAC style. James asked "what was the first game that was won here?" and the guide looked towards him with a hint of surprise, but then didn't miss a beat and answered "It was the first game here ever. April 20 1912. They beat the New York Highlanders, who went crying home to their mommies and changed their name to the Yankees."

Cheers all around.

Cheers for the tour guide and for our hostess Amanda, and for the entire Red Sox organization. For MJ and CVS Caremark All Kids Can for setting up the day and giving these kids a once in a lifetime chance to be a team. At Fenway. For Wally for standing around in 95 degree heat as every kid (and all the moms ;) got to take a photo with him. And especially for Dave Magadan who treated each one of our kids like they were actually going to be playing for the Red Sox that night.

And for the Sox, for whom the magic of the Boston Spinners together touching "Boston" on the Green Monster helped spark a huge victory that night. The Boston Spinners were there to watch and cheer their beloved team. Maybe we should be invited back before every home game. Just to touch the Green Monster.

And maybe to get a few more batting lessons with Coach Dave. Because he is that awesome.

Click here to get a glimpse of our day  --->  Boston Spinners at Fenway Park.

A million thanks to all who made it happen.

Monday, July 23, 2012

Moment of Truth Monday - Schooled again

We had a big party at the family cottage over the weekend, filled with lots of live music and visits from friends we haven't seen in ages. We had a fantastic weekend, but there was one specific moment that we all agree is our favorite.

At one point during the day, Tony and a few of our friends went for a walk around the neighborhood where they saw a really nice car. None of them had never seen anything like it before, so they stopped the driver to ask what it was, and they asked if he wouldn't mind driving it by the house so James could see it.

They knew James would want to learn what the rare car was.

A few minutes later, the car rolled slowly into view. We all stopped what we were doing to admire it as it approached.

But before any of us could even start to get the question "What IS that?" out of our mouths, James came running out the front door yelling "Mom! Dad! What is a Packard doing at our house?"

Monday, July 16, 2012

The VIP Treatment

I heard him running while I was in the shower. It was 6 am.  He was sprinting from room to room. Using all available space in our upstairs to get himself regulated for the day.

The thing is, he had NO idea what the day was to offer. He thought we were going to the Herb Chambers Cars and Coffee event to see some fancy cars. But a lot happened since the last event that was going to make this day a bit different.

I had written this post about James' love of cars and I mentioned the events, so I shared it with  Herb's C&C facebook page. I didn't expect anything, I just thought they'd like to hear that people liked their events.

Someone named Tylden Dowell shared the post on his own wall and mentioned that it would be great if Herb met James. I laughed to Tony about it, and then found out that Tylden is the Social Media Director for The Herb Chambers Companies (which I'm seriously sure would be James' dream job. It includes visiting their various dealerships and sharing photos of the cars on social media sites. How incredibly cool is that?)

And Tylden turned out to be a great guy in addition to having a sweet job. He liked James story, and shared it with his team. Then he connected with me personally and said he wanted to do something more.

And he did much more. I got an email from the Director of Training and Marketing, John Covell. Ty and a number of other people were cc'ed on the email, including Herb Chambers. Note, if you grew up around CT or MA like I did, Herb Chambers was a household name your entire life. Anytime there was talk of a new car, Herb Chambers name was mentioned. So when I leased my first car when I was in my early 20s, I went to Herb Chambers. Then I leased two more from him. So to get an email with him copied on it is kind of a big deal. I tried to keep cool though, like I'm used to this sort of thing...

John said in the email that he and Herb had been reading my blog (!) and they thought it was fantastic that James had a love of cars and it was helping his social skills. THEN, he said they wanted to "do something special for James" at the next Cars and Coffee event.

And they certainly did.

John couldn't have been nicer to all of us. He was generous with his time, and made sure everyone there knew that James was his special guest. Thankfully he was very subtle about everything and didn't put any pressure on James. I was nervous it would be over the top and James would shut down.

Johnny made himself at home in the amazing tricked out video game van. For three hours. He played every game they had, lounged in the van and chatted with the guys from Games2U.

Johnny making himself at home

James checked out all the cars, loving every second of it. I'd never been to one of the events before, so I was as excited as he was. There were amazing cars everywhere you turned. As soon as I saw one that I thought was the coolest, another would drive in to the lot.

James was beside himself. Each time a new car would pull in, he'd scream the name of the car and run over to it. I just watched, amazed at how well he knows each one and how genuinely excited he was to see every single one. It was like Santa arrived with a bottomless sack of gifts for him.

He can't help himself from scanning Rte 1 for MORE fancy cars.
He must see one because he is flapping ;)
Herb arranged for James, Johnny and their friend to get gifts of die-cast model cars, and James of course chose the Bugatti. And then he got something extra, extra special. The "please do not sit inside" sign was removed from Herb's one of a kind Mercedes McLaren SLR, and James got to do what everyone else at the event wanted.
Meanwhile, Tony and I were panicking that he didn't get all the powder off his hands from the donut he just finished,
or that he accidently stepped in something we didn't know about...
Johnny has already told me he wants the Games2U van at his next birthday party, and I feel like I might have to invite the guys anyway since they completely bonded yesterday.

James announced that the events keep getting better each time, and made us promise to attend the next Cars and Coffee as he stepped into the car. And he's been wondering if Herb is going to show up with a Pagani at the next one.

I can't thank Herb, John, and Ty enough for reaching out to us and making this such a special day for all of us, and the entire staff at Herb Chambers and the Games2Us guys for such a great event. Ty could have just hit the "like" botton and gone on with his day. Instead he started a chain of events that made the day an unforgettable one for my family.

Interactions like this make me realize that we have allies and support in places we never knew we did, and families like ours can feel better knowing there are people everywhere willing to step up and do something special. We just need to tell them our stories.