The Award

It was a rough school year.

The week before Thanksgiving this past year, I pulled James out of my favorite school in the world and moved him into another school. I wrote about why I did it here.

And then I didn't write anything else. Because honestly I didn't know how he was doing. My incredible friends who drove him to his new school and signed him out for me at the end of the day said he was doing great. It seemed like the transition was good. He no longer cried about going to school before he went to bed at night and his teachers assured me that it was "like he was always in their classroom".

But James wouldn't talk about any of the students in his class except for O (who he had known for years) so I had no idea if he was connecting with anyone else. And because this school has the exact same drop off and pick up time as his brother's school 15 minutes away, I couldn't be there to walk him down the hallway and see how and if he interacted with any other students and teachers. I only saw him running laps around the playground by himself when I went to go meet him after school, while all the other kids he knew all played gaga ball together.

The math curriculum was completely different, so when I transferred him I basically threw him in to a ton of stuff he wasn't prepared for. Although it was the one subject he had always enjoyed and felt confident in, he was suddenly struggling, and he hated English language arts just as much (if not more) than he did before. Homework became a nightmare. He agonized about it so much most days that he couldn't calm down enough to actually begin his work. He refused to read anything but his big cat photo books and spent the nightly 20 minutes asking me why he had to read, why it took so long, and how much time he had left. We began reading chapter books with to him nightly again. Reading a page and encouraging him to take a turn. Just to get him to read something. To get him to read anything.

I wondered a lot What the hell have I done?

I knew it was just going to take time for him to get acclimated so I tried to focus on what had been going well so far. He rode to school with his friend each day and didn't get upset. He was home by 3 pm most days, with the rest of the afternoon to play. I really liked his teachers and knew they were working as hard as they could to pull him in. I had a great IEP meeting with his team in May. Everyone was in complete agreement with what we needed to do to best support him.

His class did a week-long program on a historic schooner anchored in Boston Harbor in June that I wrote about here. And at the time I thought, Whoa. This is definitely the highlight of the school year. I was so proud of him for facing his biggest fears, and I had hoped that the work aboard program would help him connect with his classmates. But he wouldn't talk about it. Any of it. And he wouldn't talk about any of the kids he experienced it with. While I thought of it as a total win over anxiety and sensory challenges and was grateful that he accomplished something so huge, it didn't seem to do anything to break the social barrier.

Then, at the very end of the year, I went to his "class showcase". During the showcase, they had a ribbon ceremony where each student was to be presented with an award.

Almost all the students sat in a half circle on the floor, but James bee-lined towards a chair off to the side and behind the circle of kids. Johnny and I sat in chairs next to him and I felt, well, isolated and anxious. I thought about previous class presentations at his old school where James had (shyly) participated and everyone in the room understood and adored him.

And the What the Hell have I done feeling started creeping back in to my head again as I looked around at the students, all talking excitedly and laughing with each other while James sat off to the side, his body half off the chair and pointed towards the door.

My mind started to spin.

I just transferred a child with significant social and emotional challenges into a classroom of 23 ten year olds, most of whom have known each other since kindergarten. Nobody is going to get why he asks them all over and over again the same questions about big cats and exotic cars and runs laps around the playground. What if they don't take the time to get to understand him? What if the class is so big that they don't even notice him? It is so much bigger than any other classroom he has ever been in. He's going to be lost. He's going to be remain invisible and fall through the cracks. 

The ceremony started and the teachers took turns handing out awards to students. But these weren't the kind of awards I expected. Each award was read with enthusiasm and seemed of pick up on what was going to make each student feel incredibly special. I watched each student smile while jumping up to get his or her award.

The class Fashionista. The Speller. The Student with Perfect Attendance. Most helpful. Most Enthusiastic Reader.

As the awards continued, the students started guessing who the award was meant for. So when one of the teachers said "This student asks every day if we need help..." her voice was drowned out by 20+ kids yelling names and pointing and cheering. Even James started guessing and pointing.

It. Was. Awesome.

A few of the awards were prefaced with comments like: "This student is the fastest at math in the class" and "This student is always smiling".

And at those descriptions, some students actually stood up and pointed towards us yelling "JAMES! I THINK IT'S JAMES!"

It wasn't. Either time. But I found myself grinning. These kids, who had just met my son a few months ago, knew him. They knew he was good at math and they knew he always smiled.

And then a few second later, it became crystal clear that not only did they know him, they actually GOT him.

Because it was then that the teacher read the next award saying "This student can tell you anything and everything... about big cats" and the class went nuts calling James' name and jumping up and down and pointing to him.

And the kid who hates to be the center of attention and tries so hard to be invisible was BEAMING WITH PRIDE.

That was the moment I realized we were both going to be just fine.

James acknowledging his award as the class Big Cat Expert, with his brother Johnny by his side.
Still shot of award acceptance video thanks to my dear friend O's mom, who had the foresight to film it because she knew it  was going to be something I would want to watch. A lot. 

Sea Legs

When I got the note from James' teachers saying that his class was going to participate in a week long work aboard program on a historic schooner in Boston Harbor I was completely thrilled.

What an amazing experience! What a fantastic way to spend an entire week!

I was so excited for him to be able to do something so incredibly cool with his classmates. And then a split second later, I felt awful.

I realized I was thinking about the experience as if I got to do it. Not him.

I thought back to the time last summer or the one before when his Dad, his Uncle and his Godfather - three of the people he trusts most in the world - tried to get him to walk out on the giant concrete jetty at our beach. I was sitting at the end of the jetty with his younger brother Johnny, who ran and skipped all the way out and then was upset when I wouldn't let him climb on the jagged rocks at the end of it. But I wanted him to wait where James could see him standing there safe and sound.

I watched as they tried to get James to take step after step. They formed a horseshoe around him, protecting him from every angle. They said all the right things. They did everything they could to show him it was safe. Johnny and I stood up and waved from the edge, and Johnny danced a bit to show him how much fun it was.

He didn't even make it to the point where the jetty passed the shore line. He was terrified and miserable. I switched places and walked back with James to sit on a bench at the side of the road while the guys sat with Johnny for a few more minutes, because Johnny didn't want to leave.

And I thought about how James' amazing OT had to work so hard to get him to take his feet off of solid ground. Ladders, swings, ball pits, playscapes. All the things that most kids his age loved were the same that he was completely terrified of. Years of work helped him get to a place where he could climb and run around on a play structure without complete fear. But I still need to be there and vigilant, because if he feels trapped at any point, he can't recover. Anything that sways or swings is still forbidden.

And he was about to go on a ship for 5 days in a row. ALL day long for 5 days.

When I saw his new teachers the next day and they asked me what James would be able to handle and what they could do to support him, I told them I was concerned it would be difficult to get him to go on the ship (and maybe possibly even the dock) but I wanted him to try. I would do whatever I could, but I thought it might be better if I wasn't involved and he tried it with his new class.

We decided to play it day by day. We'd send him on Monday and see how it went. His teachers created a social story for James to read about what to expect on the ship. One of the teachers would stay with him if he wouldn't go on the ship, but they were going to see what they could encourage him to do with his class.

I readied myself to drive down to the harbor to pick him up, and to keep him home the rest of the week. His teachers promised to update me by text throughout the day.

And then I got this picture the first day.

And these the second day.

He did it. He went OUT ON A DOCK AND THEN ON A SHIP and he tied knots and he even climbed on some of the rigging (I'm not allowed to show the photo to anyone per his request although it is my favorite of all - you see the rigging, and the Roseway instructor up on the rigging demonstrating what to do and where to place your feet, and James about to take his foot off the deck and place it to climb with one of his teachers standing right behind him, her hands up for support).

He did it. He did it ALL.

Moment of Truth Monday - "That's Not Very Smart!"

The boys were just looking over Johnny's Scholastic Book Order Form - it's one of their favorite things to do each month and they get as excited as they do when they look at the Target Christmas Catalog.

They each have different colored markers to make sure I am very sure of what they each want. James needs his to be darker and then also puts his initials next to everything he wants, even if Johnny marks it too, just so he can make sure he calls first dibs on it when it arrives.

The funny part about this monthly ritual is that James hates reading. It is a struggle every day to get him to open a book. The only books I can even get him to look at on his own are about wild cats or types of cars, and even then he continually complains that "reading always takes so long".

So I always get a kick out of listening to James give unsolicited book reviews to his brother based on the title or the picture on the front of the book. Tonight he gave such advice like "You don't want to read that! That kid is FLAT!" and "How can a WORM keep a DIARY?"

Then Johnny asked what "That is NOT a Good Idea" was about, and I answered from the kitchen that maybe it was a book about people doing things that they shouldn't have and caused problems because of it, thinking to myself that maybe it was like a watered-down kids' version of the Darwin Awards.

And all of a sudden James got really excited and yelled "YEAH MOM! Like Jack!"

Sure he was about to tell on his cousin Jackson for some random thing half a year ago, I bit my lip and asked what he meant.

"That kid Jack, who jumped over the candlestick! That was NOT very smart AT ALL!"

Maybe he really is reading some books on his own after all...

Why I Knock

You know me, right? I've always completely avoided discussing any issue where there is the slightest chance of conflict. I feel uncomfortable telling people that they should believe something other than they do, especially people I don't know very well.

So the absolute hardest thing ever for me is exactly how I've spent much of my free time for half a year now.

I've been talking to strangers about politics.

I am spending all my free time walking around Boston neighborhoods (alone usually), knocking on the doors of people I've never met before and making them stop whatever important task they are doing so I can ask them to vote for John Connolly for Mayor.

The first time I went out, I held my breath at every door. If nobody answered, I exhaled with relief. If they did answer, and said they weren't interested, I apologized for bothering them, said thank you and went on my way. I didn't even try to change their mind. But about 15 doors in, something pretty awesome happened. The woman who answered the door said she didn't know much about John, and asked me a few questions.

Then she paused for a minute, looked at me curiously, and asked "Why are you doing this?"

All of a sudden, I wasn't nervous anymore. And I told her this story:

When James was 5, he was in his 3rd school in 4 years. The only reason he wasn't 4 for 4 was because we held him back so he wouldn't switch schools. Each time he switched, he lost half a year trying to just trying to adjust. The IEP team had mapped out his next move, and it meant another 2 schools in 2 years. Then he could stay for 3 years but would have to switch again after that. 

Our school district didn't have many inclusion pathways. It was kindergarten in one school, then 1st and 2nd in another. The kids for whom transition is the hardest are the ones who had to move the most.

I paused, thinking she was probably starting to tune out, but she was listening intently.

After visiting every inclusion school in the entire city, I found 1 in which James would be able to thrive, and I spent a year advocating to get him placed there. John Connolly heard what had happened and wanted to make sure no other family had to go through that. He held a Education Committee hearing on inclusion and encouraged parents to speak about our experiences. He used the hearing to passionately implore BPS to develop set inclusion pathways. 

And he didn't stop there. He had his staff members attend SpedPac meetings. He approached my autism moms group and asked if he could meet with us to learn more. He listened to us and asked thoughtful questions. He asked what he could do to help us.  

I'm out here today, I told her, because he is out there for all of us every day.

And then she hugged me. She told me that it meant a lot to her that I would share my story, and she understood how much it meant to me that he be elected.  She thanked me for telling her, and said she would make a point to learn more about him.

I've been telling my story since April, and every single person has had the same reaction as that first woman. And many have told me their own story of how John helped a friend, or returned a call immediately, or listened and offered a solution. As the year went on, that first knock turned from a moment of fear and apprehension into one of curious anticipation. Those strangers became neighbors, and talking politics turned into talking about how to make Boston a better place.

This is why I knock.

Election Day is in just 2 days, on November 5. For the first time in 20 years, Boston will elect a new Mayor. We have 3 full days to make a difference. If you can spare an hour, I'd love to have you walk with me and talk to our neighbors about making Boston better. Please join me!

Searching for a Friend

I'm searching for a friend. Maybe you've seen her?

I haven't met her yet, but I have an idea what she looks like. James reminds me incessantly of my mission. She is 2. She is not too big or too small - she is just the right size. She is black (well, it is ok if she is mostly black.)

I know what she will do. It's all very clear. She will run around a lot and do silly things. She will play with James and Johnny in the yard. Mostly she will be with James. She will sleep with him and comfort him when he wakes up anxious in the middle of the night. She will be there when he needs a friend to talk to or sit quietly with.

And she will completely ignore both cats.

I definitely know what she WON'T do. She absolutely will not eat Fluffy, Johnny's almost real stuffed kitty. She won't eat any of Fluffy's friends either. And of course she won't bark, jump, nip or whine too much. She won't mind sharing James and Johnny with a houseful of friends jumping and screaming and laughing and playing, and she won't get nervous when kids flap or make sudden noises or run back and forth across the room like squirrels.

I know. Good luck, right???

But here's the thing. Years ago, we noticed that James' mind stopped racing and his anxiety was visibly decreased when he was around dogs. Big dogs. Labs. He immediately went from completely out of sorts to calm and relaxed just by petting a dog. But with two older cats in the house, a  less than enthusiastic husband and a skittish younger brother, getting a dog for James wasn't a viable option. I tried to push it for a while, and then gave up.

James didn't however. His interest in dogs grew over the years. He started asking to drive by the off leash park on the way to school, and he kept a mental inventory of what kinds of dogs played there and when. James delighted in playing with friends' dogs. He would empty a huge basket of tennis balls all over the back yard for one lucky lab each time we went over to their house, giggling and flapping as Buddy would chase each one. He would go across the street just to pet Lola, and run back and forth in front of our neighbor's yard so their German Shepherd could run along side.

And then this past July we went to visit my sister and nephews in California. That story in pictures to come soon (I promise) but for now I need to focus on the task at hand. Because for three magical weeks, this is what I watched:

Gypsy. James' new best friend.

Johnny isn't skittish any more!

We've been back for more than a month and now both boys are constantly begging for a dog. James is stopping dog owners with a barrage of questions about age, breed, silliness level and bark frequency. All data is compared to Gypsy, his new best friend benchmark. The deer-in-the-headlight look I see in each of those unsuspecting people turns into amusement and understanding when I explain that James very much wants a dog. James rushes to explain EXACTLY what his dog will be like and that look becomes one of thoughtful mentor as each provides details, encouragement and (thankfully) responsible advice.

Having a dog is going to be a big adjustment for our family, and I know it is going to take a lot of time and care to find her, but I am lucky to have friends with a lot more experience and insight than I do who immediately stepped up and are helping me search. With their help, and with yours (if you know the dog described above who is waiting for an adoring new best friend) we'll find her.

And this new friendship is going to be totally worth it.

Following the Leader

He was two. Although it was still a bit light outside, it was way past his bedtime and he was exhausted. We all were.

We couldn't figure out why he was so out of sorts. He seemed fine until we started trying to put him to bed, but each time we tried to put him in his crib he started screaming. He was trying to wriggle out of our hold. The closer we tried to hold him to console him, the more upset he got and the more he fought to get away.

He kept going for the front door. He needed to go outside. I tried to think of what we had done that day that might have set him off. Nope, nothing different. We did an inventory check of all the things he carried around. Everything was where it should be. Nothing was missing. Nothing was left out in the yard.

He kept trying to get past his dad blocking the door. We couldn't redirect him. We couldn't calm him.

We had no idea what it was that he was looking for, but we knew he wasn't going to calm down until he got whatever it was.

Finally, we gave up and opened the door. He bolted outside and went straight for the front gate.

Tony followed him. I stayed with baby Johnny and waited.

James went across the street to our friends'. Tony explained that he had no idea why, but James needed to come over and he now wanted to go in their house. They all watched James run through their house and out the back sliding door to their backyard. He bee-lined for the Little Tykes slide and went straight down.

And his face changed. In the 2 seconds it took to slide to the bottom, he became calm. He allowed Tony to pick him up and he rested against his dad as he was carried home. He laid down in his crib, relaxed.

I realized that night that James was the only one who knew what he needed, so we should follow his lead.

Last year I asked all my friends to wear blue for Autism Awareness Day and think of James. I put a blue light on our front stoop and left it up for the entire month. I put a puzzle piece magnet on my car. I wrote a post about what I thought we could do to educate others about autism. I did all the things I thought I should do as James' mom to help raise awareness and understanding.

But I realize now that I was thinking more about what I needed last year than what James needed. I wasn't following James' lead.

James has never liked to receive any attention. At all. He has always hated when we said "good job" to him or praised him, no matter how great the accomplishment. I think it puts too much pressure on him, but I don't know for sure. He's never told me why.

Lately his little brother has been talking about autism. I'm happy that Johnny is trying to understand it better, but James gets really upset when Johnny brings it up and he tells us in no uncertain terms to stop talking about it.

I'm trying to help James navigate it all without telling him how to feel. I don't know how much he understands because he doesn't want to talk about it, but I can tell it is on his radar. Out of the blue the other day James asked if his friend has autism. When I said yes, he told me that was good because we could bring the friend to our autism open swim at the local YMCA. It is little glimpses like this that confirm we are on the right track. It all just needs to be in his own time, and it needs to come from him.

I should follow James' lead on all of this. I want to make sure that I don't try to speak for him, because he has his own voice. And it is getting stronger every day.

So for Autism Awareness month, I am not going to draw attention to James by having a magnet on my car or shining a blue light on our front stoop. I will continue to support my son and quietly watch to see which slide he chooses to go down next. And I will follow his lead.

Quirky Quips & Backseat Banter - Presidential Disqualifiers

The public inclusion school that James attends in our district is second to none. After he was moved around to 3 different schools in the first 4 years, I fought like hell to get him into this one. It is the only school that is able offer the small and nurturing environment he needs to feel safe as well as the social, emotional and academic support he needs to be able to thrive. AND it goes through 12th grade.

Three years later, I still feel like I won the lottery every day.

They have an incredible (and FREE!) after-school program with fun activities focused on improving social skills. As much as James dislikes school work and being away from home, he has asked to stay late every day this year to participate in the after-school program.

Unbelievable, right? There must be a catch. Right?

There's always a catch...

It is clear across the city from where I live, so driving home at rush hour is a nightmare. Luckily there are a handful of kids from our side of town who go to school together, so my friend Patty and I set up an "after after-school" carpool to get them all home.

As you can imagine, if you drive a bunch of kids who have just been released after 8 hours of following rules and behaving in school and who are now crammed together in the back seat of a car to be stuck in traffic for 30 - 45 minutes, you are bound to get some pretty awesome sound bites.

Especially if most of those kids are literal thinkers who happen to be on the autism spectrum.

Patty was lucky enough to be driving the day of this fabulous interaction. She is also lucky she didn't pee her pants laughing...

Sean: "Justin Bieber can't be President of the United States because he was born in Canada."

James: "John Lennon can't be President either."

(slight pause)

"Because he's dead."

(longer, seemingly reflective pause)

"Being dead is lame."

All kids in rare agreement: "yeah, it is SO lame!" 

The Surprise Party

I looked up startled. 

I didn't just hear his name. That couldn't be him in that picture.

Not on the noon news. It was an alert for a missing child. It couldn't be. I played the clip again.

12 year old boy. Dorchester. Aspergers. The picture didn't really look like the boy I knew on first glance. But when I looked again, I saw him.

His name and an old photo. The police said he'd been missing since 8:30 am. I looked at the clock.

12:05 pm. I thought about how cold it was outside. So cold that I was talking myself out of even going for a quick run a few minutes ago. I was hoping the weather person on the news would say it was better to stay in and I'd have an excuse. I never thought I'd hear this instead.

I called his mom. No answer. I texted her: "I just saw on the news. I'm getting in my car now".

I texted a few mutual friends as I threw on my jacket. Jeanette would jump in her car to go look. I privately posted to some ASD parents who I had been talking with earlier that morning. I told them I was freaking out. It is all of our worst fear. A child with autism missing. They asked if the alert was on-line.

"I don't know. I just saw it on the news. I need to go help".

Within 30 seconds, Jim found the alert and posted the link for me to put on my wall. They all shared it immediately on their pages to their collective thousands of friends. Alysia tweeted it and got her own autism mama network out in Central MA ready to mobilize to Boston. Lexi called from RI wanting to drive up and help.

I grabbed my phone charger and a cereal bar and headed out myself. The car seat was freezing. The steering wheel hurt my hands to grip, so I unfolded my sweatshirt sleeves over my hands to steer.

How could he be outside all morning? It is only 20 degrees and the wind is so strong it stings and makes your eyes water. The news said all he had on to protect him was a fleece jacket and a baseball hat.

I drove around his neighborhood, thinking about all the recent shootings in broad daylight. I looked in the few stores nearby. I went to the zoo. I went to the Boys and Girls Club and left his description and my cell phone number. I called two of my best friends. A police officer and an EMT for the city. Both D'MAC. Autism mamas. They would know what to do. They would know where to look.

His mom texted me back with details. They had an argument on the way to the bus stop and he ran from her. She thought he'd go back to his grandmother's house, but there's been no sign of him.

"And it's T's birthday today. I can't tell him his brother is missing. He HAS to be home by the time T gets back from school".

I called her immediately. "We'll find him." I promised. "What time does T get home?"

I checked the clock. It was 1:30. I did the math in my head. I suddenly knew how to make something better, at least for now. At least for T.

"Bring T to my house after school. We're having a birthday party."

I called both my boys' schools saying something has come up and I would come get them early. I sped the 20 minutes to Johnny's school, grabbed him and went straight to the store. We ran up and down the aisles of Stop and Shop for 5 minutes, getting everything we would need for a kick-ass 9 year old boy party. Frozen pizzas, juice boxes. Cupcakes. Streamers. a ToysRUs gift card. Johnny picked out some streamer crackers and those little capsules you put in water that magically turn into sea creatures ("O-M-G" he yelled. "These are going to make the party totally awesome!")

I texted Jeanette again in the check out line. Balloons. We need them. Can you bring them?

I got a text from Alysia saying that Autism Speaks and Holly Robinson Peete were asking if there was a clearer photo to tweet. I felt incredibly grateful, but the realization that they were helping almost knocked the breath out of me. I instantly thought of all the urgent RTs I had seen from them both, all about missing children with autism. I knew the instant feeling of dread and helplessness seeing those faces and hearing those descriptions that were so familiar and, oh god, hitting so close to home even though I had never met them. But this time, it was my village. This was one of my boys. This couldn't be happening.

Johnny's excited monologue about the confetti crackers brought me back to where I needed to be, and I texted his mom to check for a photo while we walked quickly back to the car. 

On to James' school. We were cutting it close. It would take at least an hour to go across the city and back at this time of day.

Arrived at James' school. He and his friend Sean looked confused when they were brought into the office. I told them we were throwing a party for T. Cheers and screams of delight echoed through the office. The school secretary, the teacher who got the boys and I all exchanged concerned glances while they danced with joy.

Got home just in time to decorate the living room and make a sign for T, who was beyond thrilled when he arrived. Jeanette and I hugged his mom and sent her off before T saw her starting to tear up.

They spent the afternoon playing Wii and Minecraft. They "made" their sea creatures and took turns firing confetti at each other. They ran around shooting each other with foam dart guns and laughing.



When you are so rushed you don't pay attention to the party games your 7 yr old picks out,
you are bound to end up with something his sensory sensitive brother can't handle. Sorry James!

I fielded the continuous stream of texts, phone calls and FB tags asking for updates and offers to help.

4:30...5:30...6:30...

Time had never flown so fast, yet somehow everything was in slow motion.

T yelled that he was having the best birthday ever. Jeanette and I both forced a smile and avoided each other's eyes.

I stepped outside and called my officer friend back. What was the word? She gave me an update on how many officers and canine units were searching. I hugged myself for warmth and started shivering as she spoke. It was the coldest I'd felt all year and I was only outside for 2 minutes. My EMT friend texted me right after I got off the phone. She had questions, and she had ideas. What did I think?

I checked the weather when I got inside. 18 degrees. Real feel below 0. No gloves. No hat. A fleece. He had been missing for almost 12 hours now.

We had the pizza and cupcakes. Sean had to go home. There was homework to do. It was getting late.

Tony got home from work and we got a text from my officer friend. A boy fitting his description was spotted at a pizza place, but was gone when officers arrived. Tony looked at me and grabbed the keys. I felt hopeful. If Tony saw him, it would be OK. He trusted Tony.

1/2 hour later Tony came home alone. He checked every place in the plaza. Showed them a photo he took when they went to a basketball game last year that he kept on his phone. I couldn't believe I forgot about that. I called my first responder friends back. I have another photo. I'm sending it now. It might help.

T announced that his mom was the greatest because she was letting him stay out so late. 8 pm on a school night was incredible even for his birthday. I laughed as I looked away and silently pleaded. God please find him safe and bring him home. Now. Please.

T's mom called. Still no word. Tony brought T home and I tried to help the boys with their homework. It was a disaster. I gave Johnny all the answers, and wrote everything out for James. I just needed things to be easy. James got upset because he was supposed to read and it was already so late and he was going to be on yellow if he didn't do it. I promised him we would read in the morning, knowing that I would just mark it down. I had to do it. I needed them to go to sleep happy.

My EMT friend called just as I got James tucked in with his weighted blanket for the 3rd time. Her brother, a police officer, was working the case. They were trying to think of where he would go based on what her own son with autism might do if he was out there. I couldn't imagine having to consider my own child missing as part of my job to try and save people on a regular basis. I realized then she had 100 x the strength I already thought she had.

Tony got home after talking to T's mom. Still no word. I heated up leftovers and had at most 2 bites.

While I furiously exchanged texts with all our friends, we watched the 10:00 news. Banal meaningless snippets. Nothing. @Assignguy came on at about 10:25 with the same police alert photo and the same missing person announcement, and said he'd be back after the break with some other photos. I tweeted our recent photo to him. "I hope it helps" I said.  He tweeted back immediately "Thanks. Trying to get the word out".

I finally checked Facebook and Twitter and saw the incredible number of my friends and their friends who shared and commented and pleaded and prayed and offered to help search. I read Diary of a Mom's post with the link to the Boston Police Department and her message (to her almost 12,000 fans) saying "Please spread the word. This is OUR kid". Tears started flowing as I tried to write a response to all the people who were asking questions and sending prayers in the comments of her post. People I didn't know, but who were not strangers. They were all in my village. I needed to say something to them. I just didn't know what.

And just as I was about to hit send on a comment saying "thank you for your prayers", my phone rang. It was the EMT. As soon as I answered, someone else called. It was my officer friend.

"WE GOT HIM! HE IS SAFE!"

And with those words, everything was suddenly OK, and it was just T's birthday again. The way it should have been all day.

Note: I'm telling this story based solely on what it was like for me that day, because I can't even begin to comprehend what his family must have been going through. There were so many people who reached out to the family through me, or through Facebook and Twitter. People who had never met this family but offered to drive hours to come search in frigid weather, on city streets with a recent history of random shootings. It was a day during which both my real life village and my friends who live in my computer jumped to help out however best they could, and everyone I knew stopped in their tracks to figure out how to help a 12 year old boy get home.  I'm fully aware that I am the luckiest person in the world to have such incredible people in my life. His mom is not on Facebook or Twitter, so she may not realize exactly how many people came together to help her son, or the extent to which her son's photo was shared and prayed over, but please know that I will make sure she understands that she was not, and never will be, alone. She has a village of people standing by her side. A village that stretches all the way to Australia.

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.

 

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

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