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, May 28, 2012

He Draws Us In

It all started when he got punched.

We were driving his friend Luca to the pool last summer and James was obsessing about traffic lights, as always, when Luca leaned over and punched him. "Punch buggy Red! No Punch backs!" he yelled.

James whined "Mom, Luca punched me!" Then immediately curious, he forgot all about the punch and asked "What's a Punch buggy?"

We explained the game, but he still didn't get it. Then all of a sudden he noticed the VW symbol on the car. "Mom! What's THAT?" he squealed, like he was seeing something incredible. I started to explain that each car company had a symbol, but before I could finish, he had noticed 4 other symbols and was asking me what they were in rapid fire succession.

He. Was. Hooked.

Within days, he knew each symbol and could identify cars before I could even make out whether they were sedans or hatchbacks. And the obsession grew as quickly as his expertise. He catalogued each car he saw, mentally keeping track of which ones were a dime a dozen (Priuses and Civics) or ones that he only saw a few times (Cubes and Corvettes).

Soon it was only "Fancy Cars" he wanted to find, although he still kept an internal list of every car he saw. I watched him scan the roads tirelessly, the same way I used to look on the side of the highway for bags of abandoned puppies I could rescue. I know. I have issues.

I wrote a blog post about his new love (click here if you want to read it), and within 5 minutes of hitting publish I received an email list of the 10 fanciest cars in the world from our friend Robbie. It made my day. James was overjoyed and kept a copy of it for reference (of course, he wouldn't bring it in the car because he was afraid someone would take it).

Then it snowballed.

His Uncle Steve started sharing pictures of a friend's Lambo and giving James books about muscle cars. His Aunt Heather regularly pins exotic cars to a special Pinterest board we made for him.

Tony's coworkers gave James both a Ferrari and Maserati hat. One of them has some connections she is going to tap into for James to see some fun cars, and a few actually have fancy cars and have made them accessible to James.

I posted on Facebook last month that I needed to find James a Bugatti and a DeLorean in Boston. Within minutes, Michelle posted a recent, local DeLorean sighting and Alysia sent me a link for Herb Chamber's Cars and Coffee (which just happened to be the upcoming weekend, and would feature his newly purchased Bugatti). James and Tony went on their first significant father/ son adventure together, and James still talks breathlessly about it more than a month later.
Herb Chambers' Bugatti - 1 of only 300 ever made.
James and Tony drove an hour at the crack of dawn to see it. TOTALLY worth it...

Cars are now entwined in everything that James is involved with, and they are actually helping him communicate. Everyone around us is now versed in "Fancy Cars". From our friend down the road who tagged a photo of a lambo he saw and "thought of James", to the friend across the street who talks to James about exotic cars daily and compares which ones are worthy, to the man we saw at an ice cream stand in CT with a 1960 Porsche when James made a beeline for his car and started asking a ton of questions (and since he was on a roll, he then went on to spend 20 minutes teaching his Uncle Mike everything he needed to know about Fancy Cars).

I love to ride with James and see him spot a Lotus on the other side of the Mass Pike when all I see is a streak of yellow, or hear him scream "LAMBORGHINI" from the playground as a black blur speeds down the road off in the distance. But I'm his mom and this is my life. I never expected everyone around us to rally around this obsession and I definitely never anticipated what the cars would do for his social skills and his confidence. James has always struggled so hard and so intensely to try to interact with other people. It has been heartbreaking and frustrating for me to watch him try to have a conversation by repeating the same questions over and over, so it is profoundly amazing to me that he is now actually creating specific connections with everyone around him. Purely by being himself and talking about what he loves.

He draws us in. It's in his nature. And as much as I am enjoying this obsession and am curious to see where it might take us, it makes me realize something much more significant. No matter what James' interest, he is going to be able to draw us all in.

And I know that we are all going to be happier for being part of whatever he uses to connect with us, and in doing so, being part of HIM.

Note: In fact, I have a handwritten note that I carry in my bag to the owner of the DeLorean, just in case I see it parked while I'm "casually" driving through his town center on the long way home from James' school, scanning, like James does, for a glimpse of silver. The note tells James' story, and asks if we can come visit his car so James can add it to his mental collection. I know he is going to love James' story and then fall in love with him. Just like we all have.

OH, one last very important note - the next Herb Chambers Cars and Coffee event is coming up June 9. James WILL absolutely be there. He just made us promise to take him. Click the link for details if you want to meet up with us and see the Bugatti!

Tuesday, May 22, 2012

Johnny's Inspiration

My friend Alysia told me about a graphic organizer app for the iPad that is on sale today, and it looked like something that would be helpful for James down the road, so I downloaded it. And promptly forgot about it.

Since today was parent pick up for both boys followed by double header activities, I threw the iPad in the car to keep them from driving me crazy amuse them on the drive crossing the city back and forth in afternoon traffic.

Johnny noticed the app right away and asked what it was. "Oh, it is something to help with homework and writing papers" I answered without paying much attention, because honestly I was too busy wishing I picked up an iced latte for the ride. I assumed he went straight to playing his favorite Toca Boca apps.

But when I got to James' school and took back the iPad to put it away, I saw this:

AND this:

Who says he needs organized religion?
I think he's got it all pretty well covered right here...

Yeah, Wow.

So for $6.99 and a tip from a smart friend, I got an app that might help my ASD son who is like a victim of torture when it comes to formulating his own theories and then having to try to communicate them, PLUS I got an added bonus of a tool that his 7 year old brother (with a potential god complex) can use to document all the processes and theories he feels he needs to tell everyone he knows perfectly. Since he spends most of his time explaining these to me in great detail, maybe if he has it in writing he won't end up exasperated when I inadvertently stop paying attention halfway through.

Well done Inspiration Maps. If your kids are anything like mine, Johnny god help you, go get the app today before it goes back up to the full (double) price. Easily one of the best apps since the best barrier breakdown ever: Angry Birds.

Monday, May 14, 2012

The Conspiracy Over Three Cornered Hats

Johnny is studying Colonial America in 1st grade, and is really, REALLY excited about it (that is probably material for a whole host of spinoff posts right there. Stay tuned for the few years to come. They should be very interesting...)

He even gave me some books he illustrated about Colonial America for Mother's Day, and he couldn't wait to read them with me and show me everything he's learned.

He even colored some of the key words in purple so I would understand.
He was extra excited this morning because today he was going to be sit in a small group with his teacher and make a Colonial American 3 cornered hat.

James doesn't take things like this very well. He is ALWAYS concerned that someone is going to take something away from him, or that he is being left out of something amazing and "the other guy" is going to get that something that he won't.

It doesn't matter what it is. It can be one extra brown M&M in his friend's bowl, or that his homework lasts longer than Johnny's even though Johnny started earlier.

He doesn't even really care what it is. He makes up all sorts of imaginary scenarios where some "other guy" gets something that he wants, and then there will be nothing left for him. His brother could be going to the doctor for a shot and James will be upset because maybe, just maybe, Johnny will get a treat after the visit. And then when the next time rolls around that James needs a shot, that treat will be gone.

Since he doesn't understand that "everything turns out even in the long run" and he usually sometimes gets things that his brother doesn't, that thread of reasoning is useless. He'll say he understands, but it doesn't stop his mind from racing through every possible thing he holds near and dear, and how those things will soon be taken from him.

So when Johnny started singing a little song about how he was going to make a Colonial American 3 cornered hat at school, James suddenly spiraled into a meltdown that bordered on comedy of the absurd.

"He's going to make a chocolate 3 cornered hat and there isn't going to be any chocolate left for me!"

What the WHAT?

He was beside himself, convinced there would be no chocolate left. It took almost 10 minutes of me calming him, and Johnny telling him that hats were "actually made of leather not chocolate" (which "actually" seemed more condescending than informative to me, but it seemed to be helping James so I let it go).

When James finally calmed down enough, I thought we were going to make it through the rest of the day OK.

That is, until we walked into his classroom and James blurted out in frustration

"Oh no! A got here first! He's going to finish his math before me and I'm not going to get as much free time!"

Friday, May 11, 2012

Play Ball at Fenway!

Last fall James had the incredible opportunity to be a New England Patriot for a Day. I posted about my game plan here and then gave the play by play here.

Both James and his friend had a blast. I was thrilled watching James participate, and was really impressed by the CVS Caremark All Kids Can program. I could tell that a lot of effort went in to making the day so much fun for all the kids, and the volunteers were all absolutely fantastic.

It was a once-in-a-lifetime sort of day, and I was grateful we were able to be a part of it.

So I'm really excited that CVS Caremark All Kids Can is bringing their A game to Fenway Park this summer, and they want teams of children with disabilities, and inclusive baseball teams, to come play ball!

Each team that participates will get: 
Photo by Constance Brown Photography

  • Hitting tips and instruction in the Red Sox batting tunnel with Red Sox Batting Coach Dave Magadan
  • On-field batting practice with Coach Magadan
  • A walk around the Warning Track for a team photo with Coach Magadan in front of The Green Monster
  • Boxed lunches and gift bags in the Red Sox dugout
  • A VIP tour of Fenway Park
  • Early entry to pre-game Red Sox batting practice
  • Tickets to game in the CVS/pharmacy Family section for baseball camp participants
This is really going to be a dream day for your child's team -- even if the team is made up of friends and you are the coach!

Photo by Constance Brown Photography

The online application process for this summer's camps is open through May 15th, so don't wait! You can learn more about the CVS Caremark All Kids Can Baseball Camps and apply for your team at CVSCaremarkAllKidsCan.

Check out this great video about this incredible experience. Your team is going to love it, and so will you!


Photos and video used with permission.

Thursday, May 3, 2012

Scene and Be Heard

Note: After reading this post, you will be completely sure that James' perseverative anticipatory anxiety is genetic.

I love The Colgate Scene. As soon as it arrives, I sit down and read it cover to cover. I read every article and story, always so impressed with what my university does and who is affiliated with it. I stare at the photos, soaking up the atmosphere and recognizing old friends. I squint a little to read the captions and say with a huff  "Really? This girl wasn't even born when I was there!" but I remember it all like it was yesterday, so am genuinely happy for her to be there today. I read all the class news, even those where I don't know anyone. When I read my own class news, I see my friends' faces still at 19 years old, and always cheer their achievements and try to envision more of what their lives are like today.

So when my friend, our class news editor who must have been deep into that bottle of wine that was her muse, made me sound much more interesting than I am in one of her updates, the editor of The Scene contacted me and asked me to tell our story as part of  "The Passion for the Climb". I was terrified.

This is how the series is described:
"Passion for the Climb" — it's what exemplifies the spirit of Colgate people. You share a thirst for a life of accomplishment and the will to do things right. In your academic, professional, community, and personal endeavors, you relish the effort, the process, the journey, and care deeply about how you lead your lives, as much as you care about reaching the top. As the Colgate song "In 1819" reminds us, our community pushes ever higher, "up the hill with profound determination."
Yeah, no pressure there.

It's so easy coming over here. I feel like I'm just writing an email of what I've been up to, and how James and Johnny are doing. I know you are here reading it because you know us. And autism. You know what a big deal a blown kiss is.

But to tell my story to everyone I went to college with? That was daunting. The schoolmates I read about in each issue of The Scene who went on to be teachers, CEOs, rocket scientists and published authors? Some classmates are helping to save the world. Literally.

Classmates who haven't seen me since back in the day when... well, actually some things are better left unsaid and I'm just glad Facebook didn't exist back then.

I wasn't sure I was ready to tell them our story, because I was afraid they wouldn't get why a simple drive through Boston is such a huge deal to me, and how these seemingly little things that I write about are as important to me as landing on the moon.

So I held my breath and told the editor what I was afraid of. But Rebecca didn't laugh at me or belittle our story. She told me it was important and she would help me tell it. She was insightful, encouraging and, most of all, patient. She had read my blog and knew James through the stories. She knew what I wanted to say and helped me figure out how to tell it. All in 800 words.

But even though the finished essay has my editor's blessing (it was so incredibly cool to get to work with an editor that I had to say that just once!), I've still been holding my breath all this time. I didn't want to tell anyone it was going to be printed, in case I led someone to the story and they didn't think it was worthy of being there. I would feel like I failed James if I wasn't telling his story in a way that everyone could actually see how incredible he is, and how unbelievably proud I am of him.

The Scene must have gone on line recently, because a few nights I got a message on Facebook from a friend I lost touch with after graduation. She said she searched me out after reading our story, because it meant a lot to her.

And as soon as I read her note, I let my breath out. She got it.

Then I realized that many of the schoolmates reading the essay are my friends, and they are going to get it, because they get me. And I was reassured that I'm not failing James, and I need to keep telling his story. If this is the only note I receive about the article, I'll feel like I did good.

And here it is. The Colgate Scene Spring 2012. Please go check it out -- Rebecca did a lot of work to make it print worthy and she deserves to have it read ;) Or, if you are like me, you can wait for the print edition to arrive in the mail so you can read it cover to cover.