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.





Creating a Special Space

I watched the three year old drop to the ground and giggle as he rolled down the tiny mound. I laughed at how unbelievably adorable it was that he viewed the mound as a rolling hill. I remembered countless times of hill rolling with friends without a care in the world, and felt that inner peace you do when you watch children at play.

Then I turned to James and waited for him to follow his friend. He made some really awkward movements. He lifted his arms up and down and looked, confused, as his friend laying a few feet in front of him. He painstakingly tried to lower himself into a position where he could roll.

And all of a sudden the reality of our situation slapped me in the face.

Oh my god. He doesn't know how to roll down a hill. He is four years old and he can't figure out how to lay down on the ground.

Sensory Processing Disorder wasn't new to us. He'd been faithfully seeing his Occupational Therapist for over a year, 2x a week. We had booklets of evaluations with phrases that I was still trying to comprehend. Dyspraxia. Gravitational Insecurity. Tactile Defensiveness. Low muscle tone.

The list went on. Since I was still trying to remember what PDD-NOS stood for and was completely overwhelmed by the diagnosis on the autism spectrum, I tended to downplay the sensory side of things - even though I knew in my heart that Sensory Processing Disorder drove so much of his behavior and anxiety.

That moment completely woke me up, and I started focusing on the sensory issues. I paid close attention each time we went to a playground. I watched him run laps around the perimeter instead of climbing and consoled his meltdown each time I'd try and put him in a swing.

It was frustrating and heartbreaking. A good friend's birthday party at an indoor playground should have been heaven for a five year old. Instead he sat still in a little car and watched nervously at the twenty- two other children running around him.


James in the middle of his friend's birthday party.
You would never know there are 22 kids running around him.


The aquarium and the zoo. Trampolines and slip and slides. A sit and spin. Slides and tunnels. All were added to the growing list of things to fear and avoid.

As his little brother grew, it was clear he was a thrill seeker. I had to find ways to let Johnny go on the merry go round while James screamed because he was terrified to even be near it. I avoided any place where James would be out of his element because it would mean that Johnny wouldn't be able to play the way he wanted to. The way he should have been able to. I felt trapped knowing that we couldn't go to the same places my friends were taking their kids.
Thankfully we had the best OT in the entire world. Amy was able to immediately see and understand James' reaction to everything in his world, and she created incredibly complex programs that helped address these challenges head on. We started sensory diets at home that began to help.

Sensory seeking kids need and deserve a place where they won't be judged when they crash and spin and jump and seek activities that organize them. They need to go up the slide and down the stairs without receiving disapproving looks. Other kids like James need a safe space to overcome their fears and not feel inferior to others.

And parents of ALL these children need and deserve a space that provides all of that for their families, and arguably more important, the community that will inherently come with it.

My incredible friend has taken a leap to open such a place. It is called SenseAbility Gym and it is a much needed place for kids like James. For families like mine.  They are in the running for a $25,000 grant from FedEx to help them get off the ground. You can vote for SenseAbility Gym every day until 11/24.

Vote HERE. Every day until 11/24. Vote for James and for hundeds of other children this gym is going to help. Vote for me and for all the families who will actually be able to enjoy a public play space, possibly for the first time ever.

And thank you. From the bottom of my heart. I know how lucky I am to have such an incredible support network. I'm so thankful to have friends and family like you who take the time to read our story, and I appreciate your support more than you will ever know.

xoxo
Kristin



Just a Walk in the Park

When I had to stay home from a planned hike earlier this week to take care of sick Johnny, my friend suggested James go along with them anyway.

He didn't want to go. He was nervous. He thought he'd get lost in the woods or get separated from everyone. He didn't want to leave his dad and me. He was convinced that something awful was going to happen to him.

Tony and I finally talked him into going, assuring him that his friends and their parents would take very good care of him. He agreed to go with a noticeably shaky voice, but was still second guessing his decision on the way to his friend's house.

I talked to my friend about it. We've been in this place together many times (I wrote about it here), and she completely understands his fears and my worries. She assured me that both she and her son would stay close to James and make sure he never felt scared.

And then she sent me this photo. This absolutely perfect photo that made me realize for the bazillionth time that both James and I have the most incredible friends. Ever.

I can't stop looking at it.

 

And every time that James tells me he can't go somewhere without me, or he is afraid that he will be left alone, I'm going to show him this photo.

 

Summary from Game 1 - Daylight Savings Sleep Battle 2012

After yesterday's post, I'm sure you are all sitting on pins and needles to find out who won Night 1 of the epic battle of Sleep vs. Autism and Daylight Savings (or are too battle weary yourself to care, but just trying to find something to read to keep you awake until your coffee kicks in).

Here are the highlights (or more appropriately, lowlights) and stats from this household.

Key moments:
11:30 pm - Parent #1 went to bed, confidently planning 3 hours of sleep before game begins.
12:30 am (pre-daylight savings time change) - Child #1 jumped in Parents' bed to start game early
12:31 am - Child #1 launches aggressive offense by kicking, twisting, turning, flipping, bolting upright and pinning own appendages under Parent #1's torso and legs.

2:30 am (post daylight savings time change) - Parent #2 shows up to play game. Sees Child #1 sprawled out across entire bed. Forfeits game. Rouses Parent #1 from state of half sleep up to inform her of said forfeit.
2:31 am - Parent #2 immediately retreats to Child #1's empty bed in dark, quiet room, prompting silent cursing from Parent #1.
2:31 - 5 am - Child #1 continues assault. Parent #1 remains on defensive.
5 am - Child #2 makes early appearance in order to participate in game.
5:30 am - Parent #1 forfeits game and sends Children downstairs to play video games.

Records broken during game:

• Child #1 beat own personal records in both "duration of time awake" at 4 hours and "average time stayed asleep" at approximately 9 minutes (Parent #1's time keeping possibly skewed by delirium).
• Parent #1 beat own personal record in "amount of time laying 1/2 off bed" (most of night) and # of times switching side of bed in attempt to free self from Child #1's appendages (4 times)

Additional Stats:

• # of times Parent #1 silently cursed Autism and Daylight Savings - 597
• # of times Parent #1 kicked - 1,268 (approximately)
• # of personal injuries sustained by Parent #1 - 6
• # of those injuries to eye sockets and nose - 4
• # of hours Children have been playing video games - 4
• Amount Parent #1 cares about time spent on video games - 0

Final score:
Autism and Daylight Savings - 1,871
Parent #1 - 0

Parent #1 loses the first match in the 2012 Epic Battle against Autism and Daylight Savings in a pathetic shutout. With at least half a dozen more nights to play, Parent #1 will be training by taking a nap this afternoon and coaching Parent #2 on how best to enter the game as a sub.

What are the stats from your own battle last night?

Whose Bed is it Anyway?

Tonight we get to turn the clocks back an hour and mark the end of Daylight Savings.

When I was in college, it meant a bonus hour at The Jug. When I first started working, it meant an extra hour lounging around, NOT in a cubicle.

But now? Now it just means I'm going to get kicked for another hour.

I wrote about James' sleep issues last year (with a surprisingly positive attitude) in Setting Clocks and Expectations . Maybe I'm already heading into this annual event more sleep deprived than last time, but I'm definitely feeling less optimistic about our progress this year.

Or maybe it's because what I view as an ongoing family challenge to be addressed, my boys have decided it is our everyday routine, as is entirely obvious from the interactions we had this past week:

The other morning I told Johnny that I left his school uniform on my bed for him. He answered "Which bed? The one in your room or the one you actually sleep in every night?"

And then, later that day, James was upstairs with his Dad. I have no idea what actually happened, but I imagine it went like this:

James said his usual: "I like your bed much better than mine. It is more comfortable".  

Tony matter-of-factly answered: "Our bed isn't really big enough for 3 people and maybe you should think about sleeping in your own bed."  

James asked: "Is there a bigger bed?" 

Tony (who apparently is absolutely, completely unable to lie) said: "Yes, this is a Queen sized bed. They make a bigger bed called a King".

That is what must have happened, because James came immediately running downstairs yelling "MOM! They make a bigger bed! Its a KING! Can you hook it up on the iPad Mom? Hook up the top 10 list of biggest beds? Wow! Look at this! There is an ULTRA KING! We can get a Ultra King sized bed and then you don't have to get in the way of my legs when I want to kick anymore! Yay! Let's get an ULTRA KING!"

And with that, I sighed and was just about to give Tony "the look", but I realized it wasn't even worth it when I recalled our Facebook exchange earlier in this week

Kristin McCarthy Macchi Hurricane James up at 3. Woke his bro at 5. Now obsessing about #Sandy & all storms that ever happened. It's gonna be a LONG day. #autism

Tony Macchi Well that explains why you looked so tired this morning.

 

*Sigh* Just bring on the extra hour already. I'll spend it debating whether I should cave and buy the Ultra King sized bed, or just move back onto the dog bed on the floor of the boys' room.

 

Election Hearsay from the Backseat

I'm thinking Tony and I are going to need to do a much better job teaching the boys about sex than we have about politics if the conversation in the back of the car today is any indication...

James' friend Sean upon seeing an Elizabeth Warren sign: "I do NOT want Elizabeth Warden to win".

James: Why? Do you want Obama to win?"

Johnny" "Right, because he needs to beat Scott Brown".

Sean: " I DO want Obama to win." (starts "Four More Years" chant. My boys join in. I feel pride.). "But I don't want Warden to win. And besides, that's a TOTALLY different contest. Warden is running against Scott Brown for the Massachusetts US Senate" (at this point I start thinking that his parents are doing a way better job than me teaching their son about politics)

And then he continues and I suddenly feel much better... "It's not Brown that's the bad guy! Romney is the one who wants to get rid of Cartoon Network!"

James and Johnny both, voices tinged in fear: "WHAT?"

Johnny (now completely irate at the thought of his beloved network gone): "WHO would want to get rid of Cartoon Network? WHY would he do that? But it has the BEST shows! He couldn't really, could he?"

Sean: "I don't know, but that's what Gabe told us, so it must be true."

Johnny: "But some kids make mistakes sometimes, at least a lot of the kids in my class except me do, so maybe he's wrong." (Now I'm both wondering where my son's "god complex" came from and thinking I'm going to hear a concerned "really, mom? Is it true?")

Nope...

James: "Yea, let's ask (classmate) Brendan on Monday. He'll DEFINITELY know".

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

"First in Math" Overload

Two ways to tell if your 7 year old has been spending too much time playing "First in Math" on the computer...

He will wake you up telling you that you need to see the categories on his bed. Drowsily, you will follow him into his room where you will see this:

MOM! Look! They are in 3 categories. Unicorns, Kittens, and Other".

"That is, Unicorns on the left, then kittens in the middle because they are my favorite, and then Other.
Because there are others".

When you finally stop shaking your head to yourself and go downstairs to make yourself a much needed cup of coffee, he will call out to you:

"MOM! James spilled flavor blasted goldfish in the living room! Don't worry, there aren't THAT many though".

There is a short hesitation. And then,

"Well, I guess there are kind of a lot, because there are enough to make a triangle!"

And, confused again, you will walk into the living room with the dustpan to see this:

Now if you excuse me, I'm going to go find my Quirky Kids book...

Bugatti Brain (Or Why I Think Wayne Carini Needs James as an Apprentice)

A few weeks ago, on a perfectly beautiful Fall day, we went to a car show on the Boston Common called The Boston Cup Classic Car Show. You can check out photos of the cars at thebostoncup.com.

James didn't know what to expect, except that his favorite car would be there, and he couldn't handle the anticipation. All the waiting  - driving in, circling the Financial District for 1/2 hour looking for a spot, walking over to the Common. By the time we got to the show, he was out of sorts.

All the cars were lined up in a circle so we started walking around, stopping to check out every car, each more impressive than the last. There were at least 150 of the most gorgeous cars I'd ever seen. All side by side, encircling the historic gazebo in the Boston Common. It was incredible.

James kept tugging us to go faster, faster. "Don't stop! We need to keep going faster!" We tried to explain that we had all day, there was no rush. We tried to force him to stop and actually look for more than a second at each car.

And then it hit me. I know what he was doing. Before he could take the time to appreciate each car, he needed to catalog every car there in his head. He NEEDED to go through quickly and make sure he had the entire inventory catalogued before he could relax.

So we just went. We went FAST. We racewalked around the entire circle, barely pausing long enough for me to figure out what each car was before getting tugged ahead. Tony and I took turns rushing with him so Johnny wouldn't end up losing it himself. And then as Tony and James raced ahead, I heard a guy next to me say to his friend "Hey- did you see that little kid in the green Lamborghini t-shirt? That's the same kid we saw at the Larz Anderson Italian car show who..." and then, UGH!  That was it - someone walked in between us and I never got to hear the rest of that thought.  I'm very, very sure it was about how great a kid he is...

When we finally got back to the first car, James was suddenly, completely calm. He was able to walk around and tell Johnny when to take photos. He started comparing the cars, ranking his favorites. here are just a few of the many incredible cars we saw:

He willingly took a break for Johnny to go on the merry go round and play in the playground. James pronounced the Boston Common his favorite park ever, and the burger place we ate at the best hamburger ever.

Then we went back again, because we hadn't gotten a photo of his favorite car there. We raced halfway around the circle again, and waited for all the people to move out of the way while James repeatedly asked me why we weren't allowed inside the circle like those standing in his way (Clearly the VIP treatment he got from Herb Chambers may have jaded him a little...)

And finally we got THE photo. The car he ranked highest on the list of all the cars he saw that day.

And when I picked him up from school Monday, he was excitedly telling his teacher all about it. "Mom! Where's your phone! Where is the picture? Of the car? The one Mr. R needs to see - the best one!" He started grabbing my phone out of my hands and frantically looking for the photo. Then he found it and held it up for Mr. R.

Mr. R was really impressed. "Wow!" That's a Bugatti?" he asked, pointing to the picture. "It's beautiful!"


Just look past the 1948 Delahaye...

"No, THAT's not it!" corrected James "It's the one in the back! THAT'S the Bugatti. The rarest, fanciest car in the world!"

James' prized Bugatti

Note: James and I watch "Chasing Classic Cars" together, and his favorite episode is when Wayne Carini finds a Bugatti that looks similar to this one sitting in a barn in New York, and he completely restores it to its original beauty and glamour. Tomorrow morning, we are going to a Cars and Coffee event at Mr. Carini's F40 Motorsports. and all proceeds from the event go to Autism Speaks. I'm psyched to go and support Autism Speaks, but I'm really just hoping that I get to hear James and Wayne Carini talk about Bugattis...

The Waiting is the Hardest Part

I check my phone for the time. Then I check the bars to make sure I have reception.

I send another text to my friend Sheri watching my boys at the pool. How are they? Is James OK?

I'm sitting outside the hotel in my car. It's 95 degrees out. I'm blasting the A/C. I turn up the music and try to play a game on my phone. I check my texts.

I'm frustrated at myself. What was I thinking? I should have stayed with the boys. I should have just brought them with me when I went to go pick up my friend who is visiting. I thought it would be a quick round trip and I would spare them sitting in Boston traffic, but his one meeting turned into another and now an hour is turning into two. That is a long time for James to be at the pool, especially without me. What if he has an anxiety attack like he did last week? What if it is even worse than last time?

I text Sheri back. Did I tell you that he has to know where you are? That if he doesn't see you when he decides to look that he will panic and think you've left him? I know full well he is in good hands. He's been at her house countless times, and now he is at a familiar place with her and her son, and my friend Patty and her daughter. Autism mamas both of them. My support group. My village.

But I still worry. Familiar doesn't mean safe. Not to James. And this is too soon. Something is going to go wrong.

I try to think about how psyched I am to see my friend. The visits are few and far between. We get to hang out with my family all afternoon. As soon as we get back that is. My mind goes back to the day at the pool when I was saying goodbye to someone and James couldn't see me. Two minutes later I saw him with the manager, crying and trembling. "I thought you left me" he cried into my shirt.

I turn off the A/C and roll down the windows. The hot air doesn't bother me because I feel like I can't breathe anyway. It actually makes me feel better to be physically uncomfortable too.

Yes, we'll have fun together tonight. If James is OK.

I know how lucky I am. Lucky to be able to leave him with a friend for a few hours. Lucky that James can tell me what is so upsetting and ask for help. But although I recognize how blessed I am to have these luxuries, it doesn't seem to make it any easier. For either of us. And it doesn't make him less affected by autism than anyone else who is on the spectrum. 

James doesn't know what is going to cause him to panic. He can't determine what is a real life threat and what is an impossibility. Once the panic sets in, he can't stop it from completely suffocating him. I wrote about his fears here in this post last year. Nothing has changed since then.

I never stop thinking about him and worrying about when the panic is going to take hold. He can go for a week without an anxiety meltdown, only to have it come out of the blue with the kind of force that takes us both down with a single blow.

And it is back. With a vengeance. The incessant worrying at bedtime about every sound he hears conjures images of airplanes flying into the house and fires trapping him in his room away from us. He can't make his mind quiet from the fear. When he wakes up in the middle of the night every night, these are the images that haunt him. He is alone. He is trapped.

So we lay awake together each night, me quietly reassuring him that he is safe and nothing will happen to him. That I will protect him always. And he finally falls asleep, exhausted and drained. I lay awake, worrying enough for both of us.

I hear from my friend. "I'm sorry" he says. "It might be another half hour". He shouldn't be sorry. It was my idea to come down before he called with the hopes that he'd be done early.

I take his advice and go into Nordstrom to wander around. I walk past the cosmetic counter, baffled by the well dressed women sitting in chairs, gabbing while they try on different shades of blush and compare beauty secrets. How do they make it look so easy? Why aren't they rushing through their makeovers to get back to their kids? I go into the shoe department. I can handle that. I see a cool pair of sneakers and am just about to ask for my size when I see 2 other people waiting in front of me for a salesperson. I can't wait that long. I check my phone again.

I go up the escalator and start wandering through racks of clothes. Touching each piece as a I walk by, looking straight past each one. I don't realize I've stopped and am holding up a shirt until I hear a distant voice "Excuse me?"

Confused, I look towards my phone first. It doesn't sound like it could have come from there, but I'm kind of in a fog. "Sweetie?" I look up and there is a woman in front of me.

"I don't think you noticed you are in the Plus sized section. I think you should be over in Misses". I look in the direction she is pointing. I nod. Give a stifled laugh.

I put the shirt down and start moving in that direction, just to please her. I walk straight through and back out to my car. I think about all the times I've been abruptly pulled back into awareness from my fog.

By the time my friend calls to tell me he is done, I'm already back at the hotel, waiting in the circle at the hotel. Ready to get back home so I can be there to calm the fear when it returns.

Get Your Signs Right Dad...

Just in case you think we will ever get away with anything in this house...

Tony was looking at the new issue of Rolling Stone the other day, and he turned it around for James to see from across the room.



I could hear them talking about the picture. "Dad. That is a lot of tattoos. Do they come off when he takes a bath? They don't come off? At all? Ever? Even after a few weeks?" 
Humored, I kept cleaning. James went back to playing on the iPad.

Then Tony held it up again and pointed towards Ross' left arm. "Hey James, look, do you think he likes the Red Sox?"

James glanced up for 2 seconds and went back to the iPad. Matter-of factly he said  "Dad, that isn't a Red Sox sign. It's a Bentley sign".

Close up. I still don't know how he does it. The kid is good.



The Best Friend Award

Ms. L pulled me aside one day in April when I went to pick him up after school. "I had to speak to James today. He and Nixon were joking around together during circle time. They were laughing and distracting the others. I kept trying to re-direct them, but they were being too silly. I had to tell them I was going to separate them".

With that, we immediately broke into tearful laughter and she hugged me. We knew there was no way in hell she would EVER separate those boys. No matter how much a distraction they caused.

James was 6. He was in his 3rd school in 4 years. We made the decision to repeat Kindergarten just so he wouldn't have to switch to yet another new school. All kids need consistency, but for a child with an autism spectrum disorder and anxiety about the unknown, changing schools each year is debilitating. We wanted to see if being in the same classroom, with the same teacher, in the same school might mean we didn't lose half a year trying to get him re-acclimated. Maybe he would even start to participate in class or connect with someone. It was an inclusive class, and I had hoped that just being around typical peers might help him start to form friendships. I asked him daily about his classmates. Did he like anyone? Did he want to play with anyone? Did anyone talk to him? He never answered.

I was frustrated. It was already December, and although staying in the same class had helped and he seemed comfortable (as much as he could) going to school, James wasn't showing any signs of connecting with anyone in his class. He wasn't interested in even trying to connect.

Then one day out of the blue he asked if Nixon could come over. I knew of a boy named Nixon in his class who was also on the spectrum, but didn't know much about him. I didn't need to know anything. I didn't care. James asked for someone to come play! I immediately got in touch with Nixon's mom and invited him over. I had no idea what to expect. I'd orchestrated for kids from school to come over before and it usually didn't go well. I planned for the worst.

Receiving their "Best Friend Award"

What I saw was incredible. They acted like they had been friends since the day they were born. James was like a completely different child around this boy. He was confident. He was silly. He laughed. He engaged.

After that first visit, Nixon became a fixture at our house. He came over at least once a week. Plus sleepovers. Not once did I see an argument or a moment of frustration from either of them. At the end of the school year, they got a special award in class. It was the "Best Friend Award" and it was created especially for them.
I knew it was going to get harder after that year. Our families live across the city from each other. The boys were placed in different schools. I wasn't sure they would remain friends if they didn't see each other as often.

But they did. They begged to be together all the time. We had to find a way to keep them together.

And 2 years later, we still find a way to make it work. We have to. These boys mean everything to each other and bring out the best in one another. Nixon has become part of our family. He treats Johnny like a little brother, and not in the teasing, leaving-out kind of way. He affectionately calls (my husband) Tony "Mr.-Crabs-the-fat-man-who-lives-in-his-grandmother's-house", as in:
"Hey Mr.CrabsTheFatManWhoLivesInHisGrandmother'sHouse can I have some chocolate milk?
"Mr.CrabsTheFatManWhoLivesInHisGrandmother'sHouse can we play Wii?"
"Mr.CrabsTheFatManWhoLivesInHisGrandmother'sHouse can we go outside?"

The Three Amigos at lunch today

Nixon and James have been playing Wii and legos and running around the house together since 7:30 this morning. James is laughing without a care in the world. These two boys, both of whom have significant social/ emotional challenges, have developed a strong, long lasting friendship. They told me today they are brothers. Twins.

James always tells me they are going to live together when they grow up. I believe they actually might. But even if they don't, I know they are still going to be friends WAY longer than it takes you to learn how to say  "Mr.CrabsTheFatManWhoLivesInHisGrandmother'sHouse" 5 times in a row without stumbling.

Best Friend Award 3 years running

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.

Moment of Truth Monday - Schooled again

We had a big party at the family cottage over the weekend, filled with lots of live music and visits from friends we haven't seen in ages. We had a fantastic weekend, but there was one specific moment that we all agree is our favorite.

At one point during the day, Tony and a few of our friends went for a walk around the neighborhood where they saw a really nice car. None of them had never seen anything like it before, so they stopped the driver to ask what it was, and they asked if he wouldn't mind driving it by the house so James could see it.

They knew James would want to learn what the rare car was.

A few minutes later, the car rolled slowly into view. We all stopped what we were doing to admire it as it approached.

But before any of us could even start to get the question "What IS that?" out of our mouths, James came running out the front door yelling "Mom! Dad! What is a Packard doing at our house?"

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.

Youk

Recently, James and Tony got the chance to meet one of our all time favorite Red Sox players, Kevin Youkilis.  But instead of talking baseball like most 9 year olds would do, James cut to the chase and got into what REALLY matters.

James: "Do you drive a fancy car?"
Youk: "I drive a Lexus."
James, very matter-of-factly:  "That's not very fancy."
Youk: "Does your Dad drive a fancy car?
James, even more matter-of-factly: "no"

Youk, thanks for all the great memories, and for being a good sport both on and off the field. We are going to miss you tons here in Boston. Oh, and James thinks you should drive a Ferrari.



James and Youk at Herb Chambers Cars and Coffee



The Surprise

I've been impatiently waiting since last night to be able to post this, kicking myself that I didn't bring my computer to the cottage, because I've been absolutely dying to share it.

Yesterday, Uncle Steve's amazingly generous friend drove his Lamborghini to our family cottage. Just to see James. We couldn't tell James beforehand. He would have been devastated if it didn't happen, and honestly, the anticipation would have been too much for him to handle.

As much as I knew he was going to love it, I didn't expect to be able to share the experience with family and friends who weren't there. I've been trying for months to convey James' love for cars, but I can't do it justice through my own words. It needs to come directly from him. And he is so nervous around cameras that it is difficult to capture his enthusiasm in a photo. He always looks strained and nervous when he looks towards the lens.

But when you watch this video, you'll understand. Completely.

We coaxed James to sit in it and took a ton of photos. He was too nervous to go for a ride, but was happy to watch his cousin and uncle go. He walked around the car hundreds of times, memorizing every detail, and talked to Steve's friend a mile a minute. They were talking in a language that many of us there were in awe of, but could not fully understand.

And then, well after all the photos were taken and Steve and his friend went for a drive to the beach, everyone moved on to play games and get ready for dinner.

That is, everyone except James.

Because for everyone else, it was a great afternoon with a super nice guy and a really, really cool car. But for James, it was something much, much more.

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!

Johnny's Inspiration

My friend Alysia told me about a graphic organizer app for the iPad that is on sale today, and it looked like something that would be helpful for James down the road, so I downloaded it. And promptly forgot about it.

Since today was parent pick up for both boys followed by double header activities, I threw the iPad in the car to keep them from driving me crazy amuse them on the drive crossing the city back and forth in afternoon traffic.

Johnny noticed the app right away and asked what it was. "Oh, it is something to help with homework and writing papers" I answered without paying much attention, because honestly I was too busy wishing I picked up an iced latte for the ride. I assumed he went straight to playing his favorite Toca Boca apps.

But when I got to James' school and took back the iPad to put it away, I saw this:

AND this:

Who says he needs organized religion?
I think he's got it all pretty well covered right here...



Yeah, Wow.

So for $6.99 and a tip from a smart friend, I got an app that might help my ASD son who is like a victim of torture when it comes to formulating his own theories and then having to try to communicate them, PLUS I got an added bonus of a tool that his 7 year old brother (with a potential god complex) can use to document all the processes and theories he feels he needs to tell everyone he knows perfectly. Since he spends most of his time explaining these to me in great detail, maybe if he has it in writing he won't end up exasperated when I inadvertently stop paying attention halfway through.

Well done Inspiration Maps. If your kids are anything like mine, Johnny god help you, go get the app today before it goes back up to the full (double) price. Easily one of the best apps since the best barrier breakdown ever: Angry Birds.