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...

Changing the Conversation

You know when you feel every day is exactly the same as the one before, and things start to seem like they are always going to stay the same? That's the way it's been for us the last year.

James has been obsessed with exotic cars for over a year. We talk about them all day long. Every day. Questions and lists and stats and comparisons. I hear "Is this fancier than that?" and "Have you ever seen...?" in my sleep.

Because of the journey we've taken together (that I wrote about in the Colgate Scene here), I never take anything he does or says for granted. Each interaction, no matter how seemingly insignificant to the parents of another nine year old, turns into a Hallmark moment as the parent of a child on the autism spectrum.

So although I'm really bummed that I missed the moment, I'm lucky that I wasn't actually there for the thing that changed everything or it would have turned into a scene from a LifeTime channel movie.

James and I watch the show "Chasing Classic Cars" together on the Velocity channel, which is like the polar opposite of the LifeTime channel. I DVR all the shows and then pick ones I think he'll be interested in. We've been watching them for awhile, and he's finally stopped having to fast forward through them to see if there are any other fancy cars showing up in the episode, and he's just started to just watch and enjoy the show itself. That's huge for him.

So when I found out the star of the show Wayne Carini (who owns F40 Motorsports right near my in-laws' house) was having a Cars and Coffee event to benefit Autism Speaks, I knew there was no way we'd miss it. I wondered what would happen if James were able to meet him. I envisioned all sorts of rapid fire questions about Bugattis and Paganis, and I was genuinely excited to hear James ask those same questions I hear 100 times a day- because it would be to someone who understands his passion.

But this? I was SO not prepared for this.

When we got to the show there were already tons of amazing cars there. We had met up with good friends and wanted to catch up a bit, but James immediately started pulling us around the lot, making sure he mentally cataloged every car he saw. As much as there was to see in the lot, he still couldn't keep his eyes off the road, though, because cars kept pulling in. So we would lap the perimeter, him with one eye on each car we passed and the other on the 2 driveways entering the lot. We didn't stop. 

I needed a breather. So I stayed behind to keep an eye on his younger brother who had basically moved in to the mobile video game van. My job was to stand outside and hand him dollar bills every 5 minutes so he could keep playing while James circled. All the proceeds from the games went directly to Autism Speaks, so I was more than happy to empty my friends' and mother-in-law's wallets as well as my own while Tony brought James inside the F40 showroom.

Only one money transfer had taken place when I looked towards the showroom and saw Wayne Carini come out, followed closely by James and his entourage, and then a number of other people. Tony was looking at me pointing to our camera and then to Wayne. I wasn't sure if they were stalking him for a photo, but it was enough for me to leave my post (Johnny sure wasn't about to go anywhere with at least 12 quarters and an entire mobile vehicle filled with games, so I moved towards the growing crowd following Wayne.)

And I watched THIS happen:




Wayne Carini put James in the driver's seat of his famous 1958 Tojeiro

And I turned to Wayne Carini and said "thank you, this means a ton". Mr. Carini said "I think he's caught the car bug now" and I laughed that he's had it for a while and the Bugatti in the Barn episode was his favorite. I had no idea how James happened to end up in Wayne Carini's driver's seat, I was just thrilled to see James so happy.

Tony told me afterwards what happened:

While they were in the showroom, James turned to Tony and pointed in front of him and asked "Is that Wayne?"

Wayne heard him and turned and said "Yes, I'm Wayne. What's your name?"

And James said:



James and Wayne Carini
(awesome photo thanks to Jen Oliva)

And it is a really, really good thing I didn't actually hear him say this because I would have completely lost it...

"My name is James. I'm a big fan of your show. My mom and I watch it all the time".

THIS? THIS IS IT! This is the first time that James has started a conversation that didn't involve a question he needed to be answered for his own benefit, or to add information to his own internal catalog. He introduced himself to his car hero Wayne Carini, and told him he was a big fan. That's it. No questions. No probing for information from the one person who can answer all the questions he asks everyone else all the time.

I think James' interest in cars is awesome. I have a blast watching his reaction, and hearing him talk about them and ask questions of me and Tony and our friends and family. It is so much fun to watch James go up to a car at a show and start asking questions of anyone standing nearby.

But what he did,on his own, last weekend? That was unbelievably huge. It changed the conversation. This journey we are on just gets more and more incredible every day.

But be reassured that not everything changed. After he talked to Wayne, James went back to circling and scanning the roads for the next fancy car. And then all of a sudden, this pulled in to the lot. As soon as it did, James knew he had seen them all, and he turned to me and said "OK Mom. We can go home now."

Herb Chambers arriving in his Bugatti

You can see all our photos from Wayne Carini's Cars and Coffee to benefit Autism Speaks here:
https://www.facebook.com/media/set/?set=a.4706747987263.2188542.1251192499&type=1&l=c21ec795b5

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!

Fancy Cars

"What's that car, Mom? Is it fancier than a Lamborghini? is it fancier than a Maserati? Is it fancier than a Ferrari? A Mustang? is it fancier than a DeLorean? Corvette? What's the other one? The one they have in California? Oh yeah, the Hummer stretch limo?"

The questions come furiously. Quickly. The same questions all the time. No matter how many times I answer them, they come back.

It's only 8:30 am. I've been in the car for 1/2 hour after a frenzy of trying to get them ready for school and out the door on time. I'm still tired.

There is barely any time for me to remember the answer I gave yesterday. I wrack my brain, trying to give myself some time to remember the visual list I have in my head of the order of Fancy Cars, but I can't. My brain doesn't work like that, and I am exhausted from trying.

His brain does.

He collects information and catalogs it. He remembers all my answers. ALL OF THEM. If I get them wrong he tells me.

I try to take a sip of my coffee at the red "What about that car? What is that? Have you ever seen that car before? Is it fancier than a Lamborghini? A Maserati?" light.

I don't remind him that we've never seen a lot of those cars on the road, only at the car show. It doesn't matter. These are his benchmarks. He has to go through his list.

Asking him to to be quiet is not an option. Only a few years ago we were begging for this. For him to be interacting. Seems like just yesterday the trip included him screaming to go a specific way, only for "blue house-blue house-blue house-brown house-brown house-brown house-black house-black house-black house".

If there was traffic, or if I had to go a different way, it meant a meltdown.

I remember those days every morning, just when the ride to school across the city starts to get to me. And then I smile and get ready.

It's my turn.

But just before I go, I take a big gulp of coffee and remind myself to actually make a real, printed list for the next ride so I don't get the answer wrong.

"James! Do you see that blue car coming up? It is SO FANCY!"

Getting to the Heart of the Matter

James' bus was 15 minutes late today.  He got off and immediately melted into tears, completely inconsolable.  I tried to get him to tell me what was wrong and he couldn't speak.

When he finally stopped hyperventilating, he told me the bus went the wrong way.  Then he told me he was the last one on the bus when he is usually the first (There are 5 kids on the bus, he is normally somewhere in the middle).  I explained that sometimes drivers need to go a different way, that he was always safe, but he just started crying harder.  

I asked if he was nervous that he was the only one left, or if he was upset it took longer than it should have. He clung to me, and told me that they forgot about him. He then made up all types of different scenarios as to what led to him being the only child on the bus, and each of them was completely different. Then he told me he can't take the bus anymore because there is always going to be something that happens.

The thing is, because he has trouble expressing himself even on a good day, I have to ask leading questions to coax the story out of him.  And most of the time he takes those questions literally, as if I know what the truth is and am feeding it to him. 

I think he is so traumatized by the anxiety that he can't determine what actually happened yet.  Right now he is running laps in the house with such intensity that it is like he thinks he will fall off the face of the earth if he stops.

So, when you have a child who has great difficulty expressing his own thoughts, and is only comfortable answering straight forward questions, and then that child becomes debilitated by anxiety, how do you get to the root of the problem and figure out a way to move forward when only he is the only one who knows what the trouble is?  Does he even know what the trouble is?

Right now I just need to get him back so we can get through tonight, and all the added pressure that comes with homework and reading (of course it is Tony's super late day at work, so hopefully we won't all spiral completely out of control before he gets home).

Thankfully his teacher understands the anxiety that he gets from nightly homework, so we can take small steps tonight, but I realize that I'm basically putting a band-aid on it instead of finding a way to get to the heart of the matter. 

The problem is, I don't know if it is actually possible for us to really get to that.

The Real Breakthrough at the Beach

When I first started writing this blog about our journey back in April,  I thought I would do a little autism awareness project and get some people to understand kids like James (and their families) a little bit better.  I never expected it to become so important to me.  I've found that telling our story is both empowering and healing, and I feel a million times better about myself as both a parent and a person since I've started writing.

I wonder if James discovered the same thing about the power of communication. 

Last week James and I had our most meaningful conversation ever, and I posted about how proud I was of him to be able to communicate his feelings to me for the first time (A Wave of Words, An Ocean of Meaning).  Now understanding why he was so unhappy at the beach, I was perfectly content to plan future vacations near pools.

Then last Friday we were invited to spend the day with friends on the Cape.  Hurricane Irene was on her way up, and I knew the waves were going to be rough, so I asked if we could go to a bayside beach.  When we got there and I saw how excited her kids were to go to a beach with waves, I reluctantly agreed, expecting the day to be a long one.

It was windy and hazy.  The waves were taller than James.  Hanging out just 30 yards off shore were the two most enormous seals I've ever seen.  People were talking about sharks, and the Coast Guard had both a boat and helicopter scanning the surf.

Standing no more than ankle deep in the water, James' gripped my hand so hard it hurt.  I envisioned how the rest of the day was going to go, and sighed. 

An hour later, I once again experienced the healing and empowerment that can come with telling one's story. 

This was what I saw. I'll never forget how beautiful that moment was.
(look for James in the orange shirt.  Johnny is in yellow).

A Wave of Words, an Ocean of Meaning

When James was diagnosed with Sensory Processing Disorder (SPD), it was explained to me like this:

Imagine he is placed in a dentist chair along side a "typically developing" child.  The chairs drop slightly, unexpectedly.  Both children would have the same reaction of surprise and fear.  If it is repeated numerous times,  the typical child would be less affected each time.  He would anticipate the movement of the chair and adjust accordingly to plan for it.  James' reaction (or any other child with SPD) would be just as extreme each time it happened.

No matter how many times it happens, if feels exactly like it did the first time.

When a child is unable to regulate himself, it is difficult for him to explain why.  When that child also has an autism spectrum disorder that limits his ability to communicate feelings, he can quickly become distressed.

James has always hated the beach.  He screamed at the sand, the water, the sun, the smells, the seaweed.  I always dreaded beach trips.  The "fabulous family vacation" where we spent our days trying to console James, not understanding exactly what was going on in his head, but knowing he was both terrified and horrified, leaving the beach moments after we arrived or holding him the entire time.

As he grew, he still hated the beach, and each season brought the same anxiety.  I couldn't bring both boys by myself because of James' reaction, so our attempts to re acclimate him to it were few and far between.  We'd finally get to the point at the end of the summer where he could tolerate it, and even start having fun on the edge of the surf (although he'd never actually go in).   Then we'd start all over again the following year.

Last weekend, we brought the boys to the beach to visit good friends with boys close in age to ours.  I was on alert as soon as we stepped on to the hot beach, expecting the worst.  He complained a lot, but there was nothing to indicate that he was in distress.  I started to relax a little bit as he started running back and forth on the edge of the water, playing with the others.

The other boys wanted to swim out to the floating dock, so James and I stayed behind and watched them swim happily away with the other grownups.  I tried to engage him, but got nothing.  Finally, I gave up and let him play on my phone, and sat there wondering if we were ever going to get past this point, or if he would end up always playing video games in a chair, me sitting beside him, both of us feeling left out.

Then, I remembered a time when I wanted James to tell me what he did at school and he wouldn't answer.  I gave up and he started to draw.  While he was drawing elaborate mazes, he started to answer the questions I had asked. They were simple answers, not incredibly insightful, but they were answers.  I remembered thinking at the time that he was able to answer because the pressure was off.  He was busy doing an activity that calmed him, and could talk down to his mazes, instead of having to look at me and try to read expressions he couldn't process.  

I decided to try it again now that he was occupied.  I didn't expect much more than "I don't want to talk about it" when I asked why he didn't like the water, but the words that poured out of him blew me away.

"It is too big, I'm scared.  It is too deep. I can't see or touch the ground.   There is seaweed in here.  I don't like it to touch me.  I like pools better, I can see what is happening. I don't like big pools, only little ones.  And I don't like sand.  It feels hot and scratchy under my feet.  I don't like to walk on it.  I like to walk on the ground more.  I like the ground around the pool better, it doesn't bother my feet."

His feelings came spilling out like we talked about our emotions all the time, yet it was the first time he'd ever been able to tell me WHY something upset him. 
James was able to tell me why.  If he can continue to communicate why, then we can help him find the tools to regulate himself.  

And when the chair falls again, although it will be surprising, it might not be distressing.