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

CVS Caremark AKC Pats Day Part 2: Post Game Analysis

editor's note: if you haven't yet read Pre-Game Planning, this will make a lot more sense if you click the link and read the background (at least I hope it will...)  

As any good manager knows, it is often necessary to make adjustments as the game approaches. 

he was ready to go at 6 am!  (We didn't leave until noon

so he had time to take his pajama pants off...)

I knew the amazing crew at CVS Caremark All Kids Can got James a t-shirt, but I wanted him to feel like he was a Patriot before he even left the house. I was thinking Wes Welker, but the football jersey gods had other ideas, so James was sporting an equally fantastic looking Danny Woodhead jersey for his arrival at the stadium. Luca, his close friend and the clear leader of the two, was appropriately wearing #12.

The climate change gods threw another wrench in the game plan and decided a Nor'easter would make the day more interesting, so All Kids Can Patriots Day was moved to the practice fieldhouse. Not the jaw dropping stadium experience I was hoping for, but probably a good move since 5 minutes after we arrived the skies opened up.

The boys were thrilled to walk into the fieldhouse and directly through the enormous, totally cool inflatable Patriots helmet. Once on the field, they were ready to play some football (or in James' case, some sort of hybrid football/ soccer/ rugby/ handball sort of game).

Coaches Patrick "Triple P" Pass (as dubbed by one of the kids), Max Lane and Jon Williams could not have been more amazing. They were funny, patient, engaging and encouraging, and that was just with us parents. With the kids they were extraordinary!

Role Reversal

As manager, you always hope your players are mentally prepared for the game, but sometimes they need a little extra motivation.  After stretching with the coaches, Luca wasn't thrilled with the drills and preferred to break off and start his own game, pulling his little shadow with him. Luca's mom and I knew we need to adjust the game plan a bit so we offered our players a little bribe incentive to stick with the team and give 100%.

Then I saw something amazing happen. My little follower, who has NEVER gone against Luca's game plan, started dragging, yes, physically DRAGGING, his friend back to the rest of the team. We watched as roles were reversed for the first time in their 3 year friendship, and I was thrilled to see my son exude the confidence needed to lead by example for the first time ever. It carried over onto the field.

James tackled the Tackle!

Luca settled more easily into the routine of the drills, and the boys had fun, but then something set James off.  It was the arrival of the Nutcracker Pat Patriot, who must have sensed that the misnomer came from Luca, because while Luca's mom and I were in hysterics laughing about it, Pat Patriot snuck up behind Sheri and scared her silly. Luca saw his mom in distress and tried to take down Pat Patriot, and James cowered behind a coach, far away from all the action.

Luca and his beloved Nutcracker

It didn't take long for Luca and Pat Patriot to become friends, and the two palled around for the rest of the session. James, however, was on edge whenever he came near, but the volunteers, coaches and cheerleaders tried their best to engage him (extra special thanks to Sarah, a Patriots cheerleader with a heart of gold, for coming over and kneeling down to talk to James, trying to make him feel better).

Lunch might have been one of James' favorite parts of the day, but Luca was more interested in the autographs. When it was our turn to get autographs from the players and cheerleaders, Luca sauntered over to the cheerleaders' table and said "Hey ladies, who would like my autograph?" Athena graciously agreed, and Luca gave her a poster of the cheerleaders, inscribed "To Athena, From Luca".  Seriously, how can you not love this kid? The boys scored autographs from everyone, plus extras from the cheerleaders (just in case Dad wanted one).

Although James preferred to sit on the sidelines a little, he had a fantastic time, and when it was time to go, we got a chorus of "It's over already?  But we don't want to go", as well as some tired sounding "That was the best day ever, wasn't it" from Woodhead and Brady in the backseat on the way home as they investigated the contents of the backpacks they were given and ate the french fries they worked so hard to earn.

A huge thank you to CVS Caremark All Kids Can and The New England Patriots for such an amazing day. We are lucky as a community that you not only believe all kids can, but that you donate your time, money, resources and most of all, your undivided attention to our children so that they can believe it also.

Thank you Patriots (do you notice that the coaches are all blocking Pat Patriot from James?;)

ALL KIDS CAN!

Life is easy at the Life is good Festival

Yesterday we brought the boys to the Life is Good Music Festival in Canton, MA.  It is right up the road from us, and I wanted to go last year, but I was afraid with such a large scale event, it would be a day filled with meltdowns, frustration, and tears.  And that would just be my own reaction. The potential for my son (who has an Autism Spectrum Disorder, severe anxiety and Sensory Processing Disorder) and his brother (who has emotional challenges that I can't quite figure out) could be far, far worse.

We decided to try it out this year. I went expecting the worst.  We even drove separately from our friends in case we needed to make an escape.  Tony and I weighed the possibility of leaving the festival and coming back in with either or both of the boys if necessary.

Turns out, not only was it unnecessary, it was an easy and fun day for all of us.  We arrived to the parking lots and were amazed at the multiple shuttles waiting to take us to the event, 2 minutes away.  We happened to arrive at the exact same time as other friends, so the boys had pals with them right from the beginning. 

We were greeted by the first of a bazillion volunteers in bright orange shirts and led through the ticketing process.  We didn't have to stop for more than 15 seconds, and that was only because James was already panicking that he didn't have a LIG shirt like his friend and needed one immediately, so I was asking a volunteer to direct me, immediately, to the merchandise booth.



Our little friend staying safe!

After James got his shirt and stopped pulling me around, we filled up our water bottles at the refilling station, and went to what I thought was the most impressive part of the event planning - a bracelet registration for the kiddos.  We were given bracelets for each boy with my cell phone printed on them, and my phone and our names were added to their log next to the serial number on the bracelet.

Normally, it would be hell trying to get either of my boys to wear a bracelet, but because ALL the kids at the festival had them, I was able to convince them easily.  phew.

Even with the bracelets, I'm overly cautious at places with so many people.  It is too easy to lose track of them, especially with each kid pulling in a different direction and wanting completely opposite things and so much sensory input, for everyone, including parents!  Luckily, the space was so spread out and organized that I never felt it was too crowded or out of control.

I thought Johnny would be so excited to dance to his favorite singer, Laurie Berkner, but he had other ideas from the moment he saw the bungee trampoline.  So, after an hour and a half waiting in line (ugh), he finally got his chance.  And you know what?  It was so worth it to see that smile (and he did get to dance to Laurie while waiting, so it was a win-win for him).

Whenever you needed something, there was an orange staff shirt in front of you.  At times it seemed like there were as many volunteers as there were concert goers.  They had staffers running tons of kids' games, and we visited every single one.  I actually feel like I know the woman running the habitrail in the obstacle course because Johnny and his friend rode it so many times.  I should have at least offered her a cold beer. Habitrail guide, I totally owe you!

They even had staff at each garbage station helping determine if what you were throwing out was compostable.  Really.

James did great throughout the whole day.  When he got anxious or had sensory overload, Tony just took him for a change of scenery.  He ran around and explored, he danced, he was grinning ear to ear and sweaty every time I looked at him.  He loved the magic show and building in the "Chill Out tent".

As soon it started getting dark and the kids' activities ended , things got really tough for Johnny and the meltdowns started.  I thought we were going to have to bail early and I would have to (sigh) miss the Avett Brothers.



Love this new bag - good choice Johnny!

Tony and James were happy at our spot with friends watching the show, so Johnny and I wandered around the grounds, exploring even more and dancing around to the music,without the restriction of staying in one area for an hour.  Johnny picked out a cool new bag for me at Lou's Upcycled and checked out the Martin Guitar Jam tent, and then ran into friends playing in the hay.  We spent the end of the Avett Brothers show dancing around, having a hay fight and laughing with friends.

Life was great.