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, December 26, 2011

Moment of Truth Monday - the Naughty List

Mondays' Moment of Truth Series: Because life with 2 literal children is full of those, um, insightful moments.

James asked for the movie "Elf" for Christmas this year.

It surprised me since he doesn't really like ANY movies or shows and never wants to watch them. Johnny loves them, so if we put on a show he spends most of the time climbing on and off his Dad or me, zipping back and forth through the room like a dragonfly, questions coming in rapid fire succession the entire time.

It is totally exhausting to watch a show with him, but it is always amazing (and often down right belly laughing) to hear how he interprets the things he sees and hears.

This comment of his was my favorite though, because it was so totally insightful and innocent and, well, just James.

He said it when Santa told Buddy that his Dad was on the Naughty List.
"I'm not going to care if I go on the Naughty list when I'm a grown-up, because grown-ups don't really get many good presents ever. Right Mom?"

Saturday, December 24, 2011

The Gift

Editor's Note: I first wrote this post as a Christmas gift last week - I was going to surprise Tony. But when I sent it to my friend to read, she asked a few good questions that led me to realize that I had been thinking about it from my own perspective and not from Tony's. Even if I am telling our story truthfully in these posts, they tend to be a little, er, over the top. Since this is about the gift that Tony received, I want it to be as true to him as I can make it. Thanks, A, for reading it and for making me think about the way that I wanted this to come out.

I'm giving Tony the perfect gift for Christmas this year. It is a 3 pack of Hanes white undershirts, Size 8.

Tony is an amazing father. Attentive, patient, and humorous. He somehow maintains composure when our lives are the most chaotic.

When James was first diagnosed on the autism spectrum and I was spiraling out of control, he was the one who kept me grounded.

He is "our rock". So to watch him be virtually invisible for the past 8 years has been difficult for me.

Don't get me wrong, James loves his Dad. But James was never able to show his love in the way that most parents expect. When Tony came home from work every night hoping for a huge hug from his boy, there was none waiting. If he and James were in the same room and James needed something, he would call for me out in the other room. When James came into our room at night, it was me he was looking for. And if I had to leave to attend to Johnny, James would follow me instead of staying with his Dad.

Autism had changed the way we needed to view our world, and so we adapted to give James what he needed. Still, autism hurt me, so I imagined it tore Tony apart.

But Tony isn't exactly as dramatic as I am.  As I obsessed over every behavior or lack of reciprocity, Tony developed a different way to look at it. Instead of letting all those behaviors get to him, he turned it all around. When he got no reaction from his son each night as he walked in the door, Tony would cheerfully yell as loud as he could "Hi Dad! So glad you are home! How was your day?" and James would say "Dad, you're just joking, right?" It wasn't the dialogue most dads get, but it was interaction and it worked for the two of them. For years.

It started a few months back with a simple "no Mom, I'll stay in bed with Dad." when I had to leave to go take care of sick Johnny. I laid awake all night, knowing how huge it was. Wondering if Tony was awake thinking of it too.

Then a few weeks later when Tony was working late and I was getting James a t-shirt for bed, he asked "What does Daddy wear to bed?"

I told him Dad wore a white T-shirt and he immediately wanted one. When Tony came up to give him a kiss goodnight, James said "Look at my shirt Dad. I'm just like you".

I knew then that everything was going to be OK. And even though Tony didn't make a big deal out of it (and is probably not even thinking of it anymore), I knew he did too. Just in his own quiet, thoughtful way.

And I realized something else while re-writing this post to be less, er, dramatic.

I just gave myself a gift too. Reminiscent of days I actually went Christmas shopping in stores - the days before kids, when my shopping rule of thumb was "one for you, one for me". Except this gift is SO MUCH better.

I was able to sit quietly and reflect on the amazing relationship that Tony and James have, the way the Tony is showing James by example how best to react to a world in which things don't often go as expected. The way James found his own way to show his Dad how much he loves him.

It is also when I realized I could never surprise Tony with a post. I can't write a story about our journey without his input. I don't even want to.

Once in a while presents come in a package you never, ever could have expected. These are the very best ones of all.

Here's hoping you have a safe and healthy holiday, and the new year brings you a very special gift.

With love,
(as always with Tony, James and Johnny)
December 2011

Monday, December 19, 2011

Moment of Truth Monday - The Power of Words?

2 weeks ago today, James started crying when it was time for his homework. Since tears often accompany homework, I wasn't really surprised.

But then he got really upset and said "My homework made me sick. We started it in school and it made me really sick!"

Slightly confused, I looked in his backpack and laughed to myself when I saw the assignment. "James, your homework can't make you sick. Words can't make you sick. It's just a poem. Let's sit down and do it together".

James was so upset he could barely make it through the worksheet. We finally managed to finish it and I told him he could go play on the iPad while I made dinner.

He barely ate dinner, and an hour later wanted to go to bed. He was burning up. He spent the next 2 weeks out of school with pneumonia.

When he finally went back to school last Thursday, I told his teacher and we laughed. "Ah, the power of words" she said.

Power of words indeed. This was his homework:

Tuesday, December 6, 2011

A Holiday Party for the Rest of Us

As moms of children with autism spectrum disorders, our reactions to holiday events often sound like this:

"I can't do it, I can't handle them in there."

"It's too much."

"They don't know boundaries and will bother the other children."

"I'm not up to it. I can't take the looks".

"There is no way he'd sit on Santa's lap anyway, why bother putting either of us through the pain?"

"I'll skip that Christmas party."

"Maybe next year."

So when we learned a few years back that our local autism support group lost the funding for their annual holiday party for families, my group of autism mama friends decided to organize and host it. I wrote about D'MAC planning the 1st party here.)

Having this chance to give back to our community means so much to all of us that we keep doing it, and it keeps getting bigger. And better. This year, we expected 100 children to come, and we were ready to make it an amazingly special day for them.

Everyone stepped up to the plate. SafetyNet by LoJack donated gifts for every single child and more pizzas than I have ever seen in my life. TILL sent out invitations to all the families in the city they knew affected by autism and to whom they had provided support in the past. They encouraged families to come and kept track of the ever growing guest list. They helped wrap and organize 100 presents, each appropriate for the deserving children.

A DJ friend who has generously run the show for the past 3 years spun Christmas and dance tunes and children of all ages twirled and flapped and frog hopped and jumped and yelled.

The West Roxbury YMCA, who already schedules programs specifically for our kiddos, came with a team and supplies ready to paint faces and do arts and crafts.

Parents let their guards down a little bit and let their children run around. They didn't have to be vigilant to make sure their children were being "appropriate". They just let their children be themselves. They hugged old friends they'd met through various services and therapies, they introduced themselves to other parents who are traveling the same journey. They sat and relaxed. They hung out at the bar and watched their beloved Tom Brady lead the Pats to victory (yes, of course there was a bar - this was a D'MAC party!)

Another friend played Santa to these children for the 3rd year in a row. He could have told one of his buddies it was their turn. It would have been so easy to let someone else do it. He came back. He looked around the crowded hall at 100 children and took his seat, ready to deliver on a very special promise. He took a picture with every single one of them and gave them each a present.

This was no mall Santa. He was patient and jolly. He was the real deal to 100 children, including my own 2 boys who had never come within 20 feet of Santa before.

And these are just a few of the things that I heard during, and after the party:

"I think my strongest feelings stemmed from the sense that we belonged there.....that we were truly among friends old and new, who understood and accepted us for who we really were..Our typical concerns about Daniel at a party or event did not exist because his limited understanding of boundaries would be accepted...there were NO boundaries and no one was judging us/him..."

"For most of these families this is the only chance they can have their child visit Santa. There are no trips to the mall, no waiting in line for Santa. If a child melts down, no judgements, no 'why is this so hard'. "

"Since I was the only thing standing in the way of the kids on line and Santa I spoke to a few of them and one whispered to me "I know this isn't the real Santa because he is in the North Pole but I'm not going to tell the little kids because that would be mean" and then he jumped up and down when Santa finally arrived. For our kids...literal thinkers and truth-talkers this was huge. He kept it to himself and got caught up in the excitement of Santa despite knowing the truth."

"It was truly heartwarming to see how excited my kids were about going this year, and then to see how much fun they had at the party. But mostly I was almost in tears seeing all the new families and how much those kids really loved it. Really special."

"This is the first party that Timmy has been able to hang at for awhile so it was fun for all four of us. Granted, he was sitting at a bar watching Tom Brady... his mama's son!"

"I was supposed to be on 'line control' for the Santa line. Mostly I just body-blocked for the photographer so he didn't get bumped. I can't tell you how many (non-verbal or barely verbal) kids that passed by in line grabbed my hand and just held it. They managed to say it all in that gesture. So sweet."

"As always this group never fails to deliver....and boy did you ever. Robbie & Ava had a blast even when he was in sensory overload! He just went outside w/ John for a few to organize himself & came back ready for more fun."

"I was so impressed with everyone's generosity. From the gifts, to the food, to Santa Claus, it was a great day. Especially impressed with all the Momma's & the Poppa's who worked hard organizing this so my gang could enjoy! A big thank you!"

"It meant a lot to see so many new faces, I know some are just starting this journey and well, if they walked away with a smile thinking I'm not alone, that's the best Christmas present!"

Unfortunately, it wasn't perfect for everyone. A few kids couldn't come into the hall because of the noise, or had to leave due to sensory overload. James made it 2 hours before he started pulling me to leave. There were no looks. I felt none of the anxiety that I always do with a public meltdown, because everyone understood.

And you know what came from those difficult times?

Instead of "this was too big and too much, next year we'll scale it back so it is easier for our own kids", it was "Next year we need a much bigger space, with more room to move, and a separate room for sensory breaks. There are more families that we need to bring".

We've already started working on it. We're meeting next week (for drinks at the Grotto, of course) to re-cap and start planning for next year.

Here are just some of the highlights from an unbelievably wonderful day.

Thanks so much for everyone who worked so hard to make it successful, including:
Pauline Lussier and SafetyNet by LoJack
Lynn Tougas and Joshua Lyons of TILL's Autism Support Team
Santa Mike O'Brien
DJ Paul Aube
Marion Kelly, Mary Carew-Lyons and The West Roxbury YMCA
Sophia's Grotto
Fornax Bread Company
John St. Amand and Jennifer Lawlor, photographers extraordinaire
Boston City Councilor-at-Large John R. Connolly
Boston City Councilor Matt O'Malley
Boston City Councilor Rob Consalvo

And to my amazingly incredible D'MAC family,
You moved mountains to make this special day possible for so many children you didn't even know, and you brought hope, understanding, support and love to every parent who walked through those doors. There are not enough thank yous in the universe for you all. xoxo