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, 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...

Tuesday, April 2, 2013

Following the Leader

He was two. Although it was still a bit light outside, it was way past his bedtime and he was exhausted. We all were.

We couldn't figure out why he was so out of sorts. He seemed fine until we started trying to put him to bed, but each time we tried to put him in his crib he started screaming. He was trying to wriggle out of our hold. The closer we tried to hold him to console him, the more upset he got and the more he fought to get away.

He kept going for the front door. He needed to go outside. I tried to think of what we had done that day that might have set him off. Nope, nothing different. We did an inventory check of all the things he carried around. Everything was where it should be. Nothing was missing. Nothing was left out in the yard.

He kept trying to get past his dad blocking the door. We couldn't redirect him. We couldn't calm him.

We had no idea what it was that he was looking for, but we knew he wasn't going to calm down until he got whatever it was.

Finally, we gave up and opened the door. He bolted outside and went straight for the front gate.

Tony followed him. I stayed with baby Johnny and waited.

James went across the street to our friends'. Tony explained that he had no idea why, but James needed to come over and he now wanted to go in their house. They all watched James run through their house and out the back sliding door to their backyard. He bee-lined for the Little Tykes slide and went straight down.

And his face changed. In the 2 seconds it took to slide to the bottom, he became calm. He allowed Tony to pick him up and he rested against his dad as he was carried home. He laid down in his crib, relaxed.

I realized that night that James was the only one who knew what he needed, so we should follow his lead.

Last year I asked all my friends to wear blue for Autism Awareness Day and think of James. I put a blue light on our front stoop and left it up for the entire month. I put a puzzle piece magnet on my car. I wrote a post about what I thought we could do to educate others about autism. I did all the things I thought I should do as James' mom to help raise awareness and understanding.

But I realize now that I was thinking more about what I needed last year than what James needed. I wasn't following James' lead.

James has never liked to receive any attention. At all. He has always hated when we said "good job" to him or praised him, no matter how great the accomplishment. I think it puts too much pressure on him, but I don't know for sure. He's never told me why.

Lately his little brother has been talking about autism. I'm happy that Johnny is trying to understand it better, but James gets really upset when Johnny brings it up and he tells us in no uncertain terms to stop talking about it.

I'm trying to help James navigate it all without telling him how to feel. I don't know how much he understands because he doesn't want to talk about it, but I can tell it is on his radar. Out of the blue the other day James asked if his friend has autism. When I said yes, he told me that was good because we could bring the friend to our autism open swim at the local YMCA. It is little glimpses like this that confirm we are on the right track. It all just needs to be in his own time, and it needs to come from him.

I should follow James' lead on all of this. I want to make sure that I don't try to speak for him, because he has his own voice. And it is getting stronger every day.

So for Autism Awareness month, I am not going to draw attention to James by having a magnet on my car or shining a blue light on our front stoop. I will continue to support my son and quietly watch to see which slide he chooses to go down next. And I will follow his lead.