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...

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.

What Autism Shines Means to Me

I couldn't watch the news. I didn't read the papers. I only read the Facebook posts of close friends, and even limited my exposure to those.

Like everyone else, I was numb after the horrific shootings at Sandy Hook Elementary School in Newtown, CT. I went through the motions in the days after, trying to process the horrifying act, grieving for the families who lost their beautiful, innocent children, and trying to figure out how I was going to handle telling my own children.

There was too much pain. Too much sorrow. And then there were accusations and name calling and hate. Hate filled Facebook pages were created, like "Cure Asperger's, Save Children from PsychoKillers". Cruel comments were left in posts that had been written to promote tolerance and to educate. Strangers private messaged my friends about their autistic children. Threatening, scary messages.

I felt paralyzed. I wanted to take a stand, but I knew I couldn't handle such a confrontation on my own. My sister encouraged me to write about it here, to try and get people to listen, and I told her I couldn't. I was barely keeping it together for my own family. Just watching my writer friends bravely advocate and seeing the hate spewing back made me feel sick to my stomach. I couldn't take on the hate myself and instead hid behind these friends, looking for a way to gain the strength to stand up with them.

As if they understood what the rest of our community needed, these friends created a way to return a sense of security to us. When I learned about their idea on Friday evening, I felt like a weight had been lifted off my shoulders.

And after a week of avoiding both my computer and social media, I immediately sat down made this:

 

I thought I might be the only person for whom Autism Shines was a light in a dark tunnel, but I could not have been more wrong. Less than two days later, there are over 2,000 likes. Photos and stories are being submitted constantly. Faster that the administators can post them. They are being shared all over facebook among strangers. Caring, tolerant strangers.

 

I keep going back to the page and am overwhelmed each time I do. But instead of being overcome by the grief and fear and hopelessness I've had all week, I'm filled with hope and gratitude.

 

And I finally feel like I can talk about what's happened, and take a stand to help advocate for my son and for others with autism. 

 

Thank you to the incredible people who came together to create this space for us to start to heal. You have done more for me than I can ever express. xo 

 

If you haven't yet had the chance, or if you could use a lift, please take a moment to visit Autism Shines page on Facebook. It will make your day much brighter, I promise.





Dream Day at Fenway

James tried to play baseball in our neighborhood little league this past Spring. For exactly 1 practice.

I only saw the last 5 minutes of the practice and knew that continuing would be emotionally disastrous, so pulled him from the team. When I told the coach, he said he "would have tried to work with him, but maybe it was better that I pulled him". I was heartbroken, but was still determined to give James a chance to play baseball with his friends.

So when I heard that CVS Caremark All Kids Can was coming to Boston to create a "Dream Day at Fenway" for children with disabilities, I called my autism mama friends and we made our own team official. An inclusion team of autistic kids and their siblings that we called the Boston Spinners.

The opportunity came with some sad feelings. I'm lucky to have such a supportive autism village in my actual village, but I'm acutely aware that there shouldn't be that many children in my neighborhood with autism. My D'MAC (Determined (sometimes Drinking) Moms of Autism spectrum disorder Children) group is so big that not everyone on our "team" could participate, but ALL of our kids deserved this opportunity.

The easiest part was choosing our Coach. Boston City Councilor-at-Large John Connolly has done more for our families and our children than anyone else I know in this city. He has become our Champion and our friend. When he meets a mom with kids who have autism and feels isolated, he reaches out to us. He continually stands up for our children, all of whom are in the Boston Public Schools. As Chair of the Education Committee, John gives a voice to our families and children who don't feel like they have one.

The day was an absolute Dream Day. We had Fenway Park almost all to ourselves. We got to hang out in the Sox Dugout and go behind it into a hidden batting cage, as the incredibly charismatic and patient Sox batting coach Dave Magadan gave the kids some well deserved attention and batting help. Then we got to walk OUT ON THE FIELD and touch the Green Monster (something everyone who has ever been to Fenway has wanted to do!). Sadly the Sox are so far down in the standings that we were actually standing in front of our record while taking photos, but the kids each touched "Boston" on the wall to give us some luck.

The kids (and parents!) were already thrilled, but the day wasn't close to being over. They all got to hit pitches thrown by Coach Dave on the field! Watching the kids see the balls they hit go into the infield was amazing. Hearing them talk about how far they hit it was even better. D, for whom the 95 degree heat was an intense problem emotionally (totally get that!) ended up giving a play by play about his batting session: "No, that wasn't a home run...it was a triple"; "now that was a home run, see how far I hit it", "foul ball!" (I'm tempted to try to introduce him to Joe Castiglione, beloved Sox announcer and fellow Colgate graduate.)

Coach Dave told my James he was a "low ball hitter, and hit just like Big Papi" and James beamed. He had no idea what a low ball hitter is, but he sure as heck knows who Big Papi is, so he knew what a huge compliment that was.

During lunch in the dugout, Wally paid a visit to sign autographs and pose for pictures (Johnny Drama was hiding in the dugout, but James bravely went up and shook his hand as long as I promised I wouldn't take pictures, which I said "of course" as I instructed my friend to snap away ;) The first part of the day ended with a great tour around Fenway, checking out the Monster seats and asking questions D'MAC style. James asked "what was the first game that was won here?" and the guide looked towards him with a hint of surprise, but then didn't miss a beat and answered "It was the first game here ever. April 20 1912. They beat the New York Highlanders, who went crying home to their mommies and changed their name to the Yankees."

Cheers all around.

Cheers for the tour guide and for our hostess Amanda, and for the entire Red Sox organization. For MJ and CVS Caremark All Kids Can for setting up the day and giving these kids a once in a lifetime chance to be a team. At Fenway. For Wally for standing around in 95 degree heat as every kid (and all the moms ;) got to take a photo with him. And especially for Dave Magadan who treated each one of our kids like they were actually going to be playing for the Red Sox that night.

And for the Sox, for whom the magic of the Boston Spinners together touching "Boston" on the Green Monster helped spark a huge victory that night. The Boston Spinners were there to watch and cheer their beloved team. Maybe we should be invited back before every home game. Just to touch the Green Monster.

And maybe to get a few more batting lessons with Coach Dave. Because he is that awesome.

Click here to get a glimpse of our day  --->  Boston Spinners at Fenway Park.

A million thanks to all who made it happen.

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.

Raising Autism Awareness and Empathy - Together

I woke up this morning filled with hope and promise. There will be more understanding. More empathy. Buildings will be lit up in blue. There will be bright blue shirts and scarves, and lots of puzzle piece pins. Everyone will talk about the importance of research and understanding. Today is World Autism Awareness Day. People are going to get it.

But too many of them still won't, and all the blue lights in the world are not going to change that. Our trip to the grocery store this morning made that crystal clear:

He isn't being a brat because they don't have his cookies in stock. Now he doesn't know what he is going to have in his lunch tomorrow, and that scares him. My promise to go to another store and get them doesn't help, because he won't be there to see them go in the cart. He is desperately trying to hold it together, but this unexpected setback, as well as the realization that now he is going to be behind schedule getting to school and late starting his morning math because he has to try to pick something else out, something different than he has every day, is all completely overwhelming to him.

I know his crying is unnerving. I hear it in my sleep. I realize it is unexpected to see a 9 year old hyperventilating over a missing box of M&M cookies. Although I'm usually hypervigilant and try to diffuse potential meltdowns before they occur, this one took me by surprise too. I get that you just wanted to get your groceries and get out without drama. I did too. But now I have to try to console and reassure him while at the same time I feel like I need to explain this to you, and that is completely overwhelming to me. He senses that unease and it makes him even more anxious, and he cries harder.

I know you understand. If you are reading this blog, you know James. You have a James, or a Jane, in your life. You understand them. You go out of your way to help us parents every day, not just on April 2nd. You ask if you can watch the kids for an hour or two so we can get a break. You forward articles and stories you know are helpful. You applaud progress and show concern in times of challenge. You offer a shoulder and an ear when we need it. You are there for us, and we appreciate everything you do.

But what about the person in the grocery store giving us that look?

My friend wears an autism pin when she takes her boys to the store. She shouldn't have to make autism a fashion accessory on her shirt to avoid getting that look. We need to help her by changing that look from one of contempt to one of understanding.

We have to do it together. Reach one person at a time. Tell your own story about James, or Jane, and you can reach people who don't know them like you do. Show them a picture. Make them understand that these are people you love. Incredible people. Tell them the things James and Jane love to do and what makes them happy. If they know James before they run into him crying at a grocery store, maybe they will understand instead of getting annoyed. Maybe they will offer an understanding smile, or whisper a word of encouragement, and then continue on so I can focus on supporting my son.

It is going to take a lot of effort, but we can do this together. We need to weave understanding and empathy into our every day conversations so that individuals with autism spectrum disorder are fully part of our community and have the support networks they need and deserve. But it needs to come from all of us together, and it needs to be constant. Not just on the day with the blue lights. And not just from me during a meltdown, stressed out and trying to explain it while my crying son drowns out my voice.

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

A New Partnership, and a New Hope

Last night I wrote about the anxiety I was feeling before going to meet with James' doctor to talk about his medication. I got messages from friends from all over offering positive thoughts and strength. Some of them I received right before I went into the room. One included a fight song I could sing as I walked in (and I still am because the song is stuck in my head).

Thank you.

The support I got from all of you made it possible for me walk in the room with confidence. Once I was in there, I was amazed to find out that I had a supportive partner instead of a condescending (well, you guys said it best). He interacted with James and discussed options with me, and we were able to determine the best course of action to take to help my son.

Thank you for listening to me, for encouraging me, and for making me laugh when I most needed it.

I never thought this blog would turn into anything significant, but it has come to mean so much to me. I just looked at the blog stats and there are over 3,000 page views to the stories I've shared about James. The fact that you are willing to read it, and share it with others who you think might relate, is absolutely amazing to me and I appreciate it more than I can ever express.

It also makes me realize how much hope there is for people living with Autism Spectrum Disorder to be heard, understood and respected.  James' story is just one of the hundreds of thousands that there are to be told. All of them as unique as the individuals who have ASD, and all of them just as important as the others.

Going forward, I'm going to focus my attention on helping to tell those stories, because I want to make sure that everyone's voice is heard. I am confident that you will keep reading them, and sharing them, because you've listened to mine. xo to all.