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, 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.

Thursday, August 22, 2013

Searching for a Friend

I'm searching for a friend. Maybe you've seen her?

I haven't met her yet, but I have an idea what she looks like. James reminds me incessantly of my mission. She is 2. She is not too big or too small - she is just the right size. She is black (well, it is ok if she is mostly black.)

I know what she will do. It's all very clear. She will run around a lot and do silly things. She will play with James and Johnny in the yard. Mostly she will be with James. She will sleep with him and comfort him when he wakes up anxious in the middle of the night. She will be there when he needs a friend to talk to or sit quietly with.

And she will completely ignore both cats.

I definitely know what she WON'T do. She absolutely will not eat Fluffy, Johnny's almost real stuffed kitty. She won't eat any of Fluffy's friends either. And of course she won't bark, jump, nip or whine too much. She won't mind sharing James and Johnny with a houseful of friends jumping and screaming and laughing and playing, and she won't get nervous when kids flap or make sudden noises or run back and forth across the room like squirrels.

I know. Good luck, right???

But here's the thing. Years ago, we noticed that James' mind stopped racing and his anxiety was visibly decreased when he was around dogs. Big dogs. Labs. He immediately went from completely out of sorts to calm and relaxed just by petting a dog. But with two older cats in the house, a  less than enthusiastic husband and a skittish younger brother, getting a dog for James wasn't a viable option. I tried to push it for a while, and then gave up.

James didn't however. His interest in dogs grew over the years. He started asking to drive by the off leash park on the way to school, and he kept a mental inventory of what kinds of dogs played there and when. James delighted in playing with friends' dogs. He would empty a huge basket of tennis balls all over the back yard for one lucky lab each time we went over to their house, giggling and flapping as Buddy would chase each one. He would go across the street just to pet Lola, and run back and forth in front of our neighbor's yard so their German Shepherd could run along side.

And then this past July we went to visit my sister and nephews in California. That story in pictures to come soon (I promise) but for now I need to focus on the task at hand. Because for three magical weeks, this is what I watched:

Gypsy. James' new best friend.



Johnny isn't skittish any more!

We've been back for more than a month and now both boys are constantly begging for a dog. James is stopping dog owners with a barrage of questions about age, breed, silliness level and bark frequency. All data is compared to Gypsy, his new best friend benchmark. The deer-in-the-headlight look I see in each of those unsuspecting people turns into amusement and understanding when I explain that James very much wants a dog. James rushes to explain EXACTLY what his dog will be like and that look becomes one of thoughtful mentor as each provides details, encouragement and (thankfully) responsible advice.

Having a dog is going to be a big adjustment for our family, and I know it is going to take a lot of time and care to find her, but I am lucky to have friends with a lot more experience and insight than I do who immediately stepped up and are helping me search. With their help, and with yours (if you know the dog described above who is waiting for an adoring new best friend) we'll find her.

And this new friendship is going to be totally worth it.



Thursday, April 4, 2013

Mixing Martinis and Fire Pits is a Very Good Idea. If...

On World Autism Awareness Day, I wrote a post about why I wasn't going to put out a blue light on our stoop. James gets really upset when attention is drawn towards him and he is just starting to understand what having autism means. I don't want him to feel at all uncomfortable while we navigate together through uncharted waters.

I do, however, know how important it is for our children with autism to have the same opportunities as all the other kids in our community. And I know all too well how necessary it is for me to have time away with my friends to relax and unwind, so I can continue to be the best mom to James and Johnny that I can.

So when the chance came to spend the evening raising money for students with autism just by hanging out with my D'MAC friends drinking martinis at our de facto clubhouse... well, it was like all the stars had aligned.

A few years ago, folks from the West Roxbury YMCA approached us and asked how they could help. I'm not sure that at the time they realized how loaded a question that was. We had kids who couldn't participate in general swim classes and in many of the programs offered in our community. Our kids were missing out on some great opportunities to actively socialize. For some of us, the hours after school were the most difficult. Our autistic children needed constant direction and guidance and behaviors always seem to be more challenging when they get home after a long and frustrating day at school, but all our other children needed our attention also. Many of us felt like we were not doing enough for any of our kids.

We poured our hearts and our ideas out to the Y. They listened. They understood. And then they created an incredible program.

We now have an open swim and open gym where our kids can play and relax and just be themselves, in a safe and judgment free environment. Most importantly, we have an after school program with a ton of volunteers who take the students swimming and do OT based play. 

These programs provide incredible and much needed opportunities for our children, and for us.


So the fabulous Sonia and Joe Garufi at Sophia's Grotto decided to give back to the Y. They created a drink special called the Blue Spectrum Martini, and all proceeds from sales of this drink go directly to the Y's after school autism program. And they didn't stop there. They got some absolutely incredible raffle items donated by their generous vendors, including a night at the Colonnade in Back Bay, a case of Italian wine and a fire pit filled with bottles of gin and vodka! I almost feel like I shouldn't be telling you this because I want to win so badly, but I'll do it for the kids I guess...


If you've ever been to the Grotto, you'll understand why it's been my favorite restaurant since even before I was lucky enough to count Sonia and Joey as friends. If you haven't yet been to the little hidden gem in Rosi Village, you need to go. NOW. THIS WEEKEND.

The Blue Spectrum Martini and raffles will be featured until Sunday 4/7 (raffle drawing is Sunday evening.)
You'll leave the Grotto content after a delicious meal and happy you were able to help by having a fun night out. And you might even leave with a fire pit filled with bottles of vodka!!


D'MAC helping Steve make Blue Spectrum Martinis
Wicked Awesome Raffles. For the kids, right?

Just doing my part. For the kids...