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.





The VIP Treatment

I heard him running while I was in the shower. It was 6 am.  He was sprinting from room to room. Using all available space in our upstairs to get himself regulated for the day.

The thing is, he had NO idea what the day was to offer. He thought we were going to the Herb Chambers Cars and Coffee event to see some fancy cars. But a lot happened since the last event that was going to make this day a bit different.

I had written this post about James' love of cars and I mentioned the events, so I shared it with  Herb's C&C facebook page. I didn't expect anything, I just thought they'd like to hear that people liked their events.

Someone named Tylden Dowell shared the post on his own wall and mentioned that it would be great if Herb met James. I laughed to Tony about it, and then found out that Tylden is the Social Media Director for The Herb Chambers Companies (which I'm seriously sure would be James' dream job. It includes visiting their various dealerships and sharing photos of the cars on social media sites. How incredibly cool is that?)

And Tylden turned out to be a great guy in addition to having a sweet job. He liked James story, and shared it with his team. Then he connected with me personally and said he wanted to do something more.

And he did much more. I got an email from the Director of Training and Marketing, John Covell. Ty and a number of other people were cc'ed on the email, including Herb Chambers. Note, if you grew up around CT or MA like I did, Herb Chambers was a household name your entire life. Anytime there was talk of a new car, Herb Chambers name was mentioned. So when I leased my first car when I was in my early 20s, I went to Herb Chambers. Then I leased two more from him. So to get an email with him copied on it is kind of a big deal. I tried to keep cool though, like I'm used to this sort of thing...

John said in the email that he and Herb had been reading my blog (!) and they thought it was fantastic that James had a love of cars and it was helping his social skills. THEN, he said they wanted to "do something special for James" at the next Cars and Coffee event.

And they certainly did.

John couldn't have been nicer to all of us. He was generous with his time, and made sure everyone there knew that James was his special guest. Thankfully he was very subtle about everything and didn't put any pressure on James. I was nervous it would be over the top and James would shut down.

Johnny made himself at home in the amazing tricked out video game van. For three hours. He played every game they had, lounged in the van and chatted with the guys from Games2U.

Johnny making himself at home

James checked out all the cars, loving every second of it. I'd never been to one of the events before, so I was as excited as he was. There were amazing cars everywhere you turned. As soon as I saw one that I thought was the coolest, another would drive in to the lot.

James was beside himself. Each time a new car would pull in, he'd scream the name of the car and run over to it. I just watched, amazed at how well he knows each one and how genuinely excited he was to see every single one. It was like Santa arrived with a bottomless sack of gifts for him.

He can't help himself from scanning Rte 1 for MORE fancy cars.
He must see one because he is flapping ;)

Herb arranged for James, Johnny and their friend to get gifts of die-cast model cars, and James of course chose the Bugatti. And then he got something extra, extra special. The "please do not sit inside" sign was removed from Herb's one of a kind Mercedes McLaren SLR, and James got to do what everyone else at the event wanted.

Meanwhile, Tony and I were panicking that he didn't get all the powder off his hands from the donut he just finished,
or that he accidently stepped in something we didn't know about...

Johnny has already told me he wants the Games2U van at his next birthday party, and I feel like I might have to invite the guys anyway since they completely bonded yesterday.

James announced that the events keep getting better each time, and made us promise to attend the next Cars and Coffee as he stepped into the car. And he's been wondering if Herb is going to show up with a Pagani at the next one.

I can't thank Herb, John, and Ty enough for reaching out to us and making this such a special day for all of us, and the entire staff at Herb Chambers and the Games2Us guys for such a great event. Ty could have just hit the "like" botton and gone on with his day. Instead he started a chain of events that made the day an unforgettable one for my family.

Interactions like this make me realize that we have allies and support in places we never knew we did, and families like ours can feel better knowing there are people everywhere willing to step up and do something special. We just need to tell them our stories.

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

Reaching out of my Comfort Zone, for Good

Before I start, I have to make sure I say 2 things.  I KNOW how lucky I am, even though I tend to whinge (best word ever that I learned from one of my favorite people in the world).  James has his own challenges, but I do not think at all that he is, in any way, shape or form, a challenge.   He and Johnny Drama are my world.  I thank my lucky stars every night that I have them both. 

Also, Tiny Miss, this post was written before you and I talked today, so PLEASE do not think I was trying to get off the phone with you, or hesitate to call me anytime, about anything. xo

Actually, make that 3.  Sorry Tony, but because of what I managed to do today, there is a lot I didn't do.  I know you'll understand, though, and pick up the slack for me. again. xoxo

I was feeling sorry for myself this morning.  And guilty.  Guilty that I watched James get on the bus and tear up, again, while I went back in the house and poured a cup of coffee, still wearing slippers.  I felt like I should have been the one sacrificing, he goes through enough every day without me forcing him to be miserable for the hour before and after school, just so I don't have to drive across the city.

I decided to work out to take my mind off it, and it helped a lot.  

Then I had an even better idea.  I was going to sacrifice my own comfort in order to accomplish something really big this morning.

Anyone who knows me, knows that above all else, my biggest fear is talking on the phone.  I can't do it.  I would rather drive 2 hours to have a 15 minute conversation than just talk on the phone for 15 minutes, even with my own family.  I would rather speak to a room of 100 people than talk on a conference call to 3 (anyone remember how nervous I was for city council testimonies? Yes, talking on the phone is THAT uncomfortable for me).

I would rather do almost anything than talk on the phone (except hold Johnny Drama down while he gets stitches.  I did that once and we both were traumatized.  The security guard thought Johnny was being tortured, and the people in the ER waiting room were all awestruck and horrified when they finally saw us re-appear, sweaty and tear-stained.  If there is a next time, it is agreed that Tony will bring him.  I will even call someone and stay on the phone the whole time they are gone.)

There are too many unknowns on the phone.  I never know what to say.  When I do say something, I'm always afraid it came out terribly wrong and the person I'm talking to will get the wrong idea.  Without facial expressions to guide me, I don't know when I'm crossing the line. 

I go to great lengths to avoid phone conversations.  Texting, email and facebook conveniently allow me to avoid talking on the phone 99% of the time. 

So, this is who I am.  I'm not proud of it, but it's me.  Back to today. 

I'm on the board for Boston Public's School's Special Education Parent Advisory Council, and I offered to check SPEDPAC's voice mail for messages from families that might need assistance.  The mailbox was full with over 43 messages from parents who have no answers to their varied issues and concerns.

So, I fought against every instinct I had, and I picked up my cell phone.  I called them ALL (well, all except the 3 in Spanish, and the 2 others I knew were way of my league.  I was smart enough to pass them on to the appropriate people.)

I left messages for those who didn't answer, and gave them MY cell number.  I told them they could call me anytime.  And I meant it. I am now expecting calls from people I have never heard of before, and they could come at any time.  And I will have to answer.  That makes me incredibly uncomfortable, but at the same time, it makes me feel hopeful.  These parents, who left a message on an automated voice mail asking for help as a last ditch effort hoping someone will listen, will hear a message from a real person telling them they want to help.

For the ones who did answer, I asked them about their children.  I asked what age, what school.  I asked what was going on.  I asked how I could help them.  I suggested they come to the general meeting tonight and share their voice.  I told them to find me so I could meet them.  All of them.

Like I said before, I know how lucky I am.  I have the most amazing family and support system, and I don't know many other parents (of children with or without special needs) who have all I do. I decided to get out of my comfort zone a little bit to offer that support to others. 

I know it doesn't seem like much to hear for many of you (yea, big deal, she made a few phone calls.  wow.)  But for me, it really was HUGE. And by doing it, I gained more than I ever imagined I could today, and I already decided I'm going to offer to check for more messages tomorrow.

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.

The Pit in my Stomach

Sometimes I can't believe that I'm the one who is entrusted with advocating for my child.   Me.  The one who can not engage in a debate, about anything,  because I get flustered when I'm put on the spot or feel judged. 

I'm still not even sure how I convinced my husband to agree to marry me, although I know kidnapping him to a secluded cottage in the Blue Mountains of Australia and providing beer definitely helped.


All this and beer?  Who could say no?

Somehow,  I've managed to help people in my life understand what James needs in order to thrive.  I'm lucky that 99% of the people involved agree with me, or I don't think we would have gotten this far. 

Then there is that other 1%.  The one that I can not find the strength to stand up to and defend my position of what my son needs.  You know the one.  I wrote about him in  He Just Looked At Me. He Doesn't Have Autism. 

I got so much support from your responses after that post.  Many suggested I send the post to him to read (which I did. In my mind).  A few of you had incredibly humorous ideas of how I should respond, and I thank you for providing all manners of potential vindication for my imagination.

Here's the thing.  I have to go see him tomorrow.  Again. 

Tony and I agreed that he would deal with the next appointment while I looked for a new doctor, but James' recent behavior has me concerned enough about the medicine that I need to go.  Tomorrow. 

I'm trying to find the strength, but I'm already flustered just thinking about it, and this pit in my stomach just makes me want to cancel the appointment and hide out in my house.  And although that is how I often deal with my own issues, I can't do that to James.

He is depending on me, and I have been entrusted to be his advocate.

So, tomorrow morning, I'll be back in that small, stifling office, uncomfortable as hell.  But I'll have the copy of that post in my bag. 

Just by having that with me, I will feel like all of you are standing by my side, and that pit in my stomach might just go away so I can help the doctor understand what James needs to thrive.

And if it still doesn't go away, I'll just think of all those other ideas you had...