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.

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.

 

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

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 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.

Fancy Cars

"What's that car, Mom? Is it fancier than a Lamborghini? is it fancier than a Maserati? Is it fancier than a Ferrari? A Mustang? is it fancier than a DeLorean? Corvette? What's the other one? The one they have in California? Oh yeah, the Hummer stretch limo?"

The questions come furiously. Quickly. The same questions all the time. No matter how many times I answer them, they come back.

It's only 8:30 am. I've been in the car for 1/2 hour after a frenzy of trying to get them ready for school and out the door on time. I'm still tired.

There is barely any time for me to remember the answer I gave yesterday. I wrack my brain, trying to give myself some time to remember the visual list I have in my head of the order of Fancy Cars, but I can't. My brain doesn't work like that, and I am exhausted from trying.

His brain does.

He collects information and catalogs it. He remembers all my answers. ALL OF THEM. If I get them wrong he tells me.

I try to take a sip of my coffee at the red "What about that car? What is that? Have you ever seen that car before? Is it fancier than a Lamborghini? A Maserati?" light.

I don't remind him that we've never seen a lot of those cars on the road, only at the car show. It doesn't matter. These are his benchmarks. He has to go through his list.

Asking him to to be quiet is not an option. Only a few years ago we were begging for this. For him to be interacting. Seems like just yesterday the trip included him screaming to go a specific way, only for "blue house-blue house-blue house-brown house-brown house-brown house-black house-black house-black house".

If there was traffic, or if I had to go a different way, it meant a meltdown.

I remember those days every morning, just when the ride to school across the city starts to get to me. And then I smile and get ready.

It's my turn.

But just before I go, I take a big gulp of coffee and remind myself to actually make a real, printed list for the next ride so I don't get the answer wrong.

"James! Do you see that blue car coming up? It is SO FANCY!"

The Gift

Editor's Note: I first wrote this post as a Christmas gift last week - I was going to surprise Tony. But when I sent it to my friend to read, she asked a few good questions that led me to realize that I had been thinking about it from my own perspective and not from Tony's. Even if I am telling our story truthfully in these posts, they tend to be a little, er, over the top. Since this is about the gift that Tony received, I want it to be as true to him as I can make it. Thanks, A, for reading it and for making me think about the way that I wanted this to come out.

I'm giving Tony the perfect gift for Christmas this year. It is a 3 pack of Hanes white undershirts, Size 8.

Tony is an amazing father. Attentive, patient, and humorous. He somehow maintains composure when our lives are the most chaotic.

When James was first diagnosed on the autism spectrum and I was spiraling out of control, he was the one who kept me grounded.

He is "our rock". So to watch him be virtually invisible for the past 8 years has been difficult for me.

Don't get me wrong, James loves his Dad. But James was never able to show his love in the way that most parents expect. When Tony came home from work every night hoping for a huge hug from his boy, there was none waiting. If he and James were in the same room and James needed something, he would call for me out in the other room. When James came into our room at night, it was me he was looking for. And if I had to leave to attend to Johnny, James would follow me instead of staying with his Dad.

Autism had changed the way we needed to view our world, and so we adapted to give James what he needed. Still, autism hurt me, so I imagined it tore Tony apart.

But Tony isn't exactly as dramatic as I am.  As I obsessed over every behavior or lack of reciprocity, Tony developed a different way to look at it. Instead of letting all those behaviors get to him, he turned it all around. When he got no reaction from his son each night as he walked in the door, Tony would cheerfully yell as loud as he could "Hi Dad! So glad you are home! How was your day?" and James would say "Dad, you're just joking, right?" It wasn't the dialogue most dads get, but it was interaction and it worked for the two of them. For years.

It started a few months back with a simple "no Mom, I'll stay in bed with Dad." when I had to leave to go take care of sick Johnny. I laid awake all night, knowing how huge it was. Wondering if Tony was awake thinking of it too.

Then a few weeks later when Tony was working late and I was getting James a t-shirt for bed, he asked "What does Daddy wear to bed?"

I told him Dad wore a white T-shirt and he immediately wanted one. When Tony came up to give him a kiss goodnight, James said "Look at my shirt Dad. I'm just like you".

I knew then that everything was going to be OK. And even though Tony didn't make a big deal out of it (and is probably not even thinking of it anymore), I knew he did too. Just in his own quiet, thoughtful way.

And I realized something else while re-writing this post to be less, er, dramatic.

I just gave myself a gift too. Reminiscent of days I actually went Christmas shopping in stores - the days before kids, when my shopping rule of thumb was "one for you, one for me". Except this gift is SO MUCH better.

I was able to sit quietly and reflect on the amazing relationship that Tony and James have, the way the Tony is showing James by example how best to react to a world in which things don't often go as expected. The way James found his own way to show his Dad how much he loves him.

It is also when I realized I could never surprise Tony with a post. I can't write a story about our journey without his input. I don't even want to.

Once in a while presents come in a package you never, ever could have expected. These are the very best ones of all.

Here's hoping you have a safe and healthy holiday, and the new year brings you a very special gift.

With love,

Kristin

(as always with Tony, James and Johnny)

December 2011

A Holiday Party for the Rest of Us

As moms of children with autism spectrum disorders, our reactions to holiday events often sound like this:

"I can't do it, I can't handle them in there."

"It's too much."

"They don't know boundaries and will bother the other children."

"I'm not up to it. I can't take the looks".

"There is no way he'd sit on Santa's lap anyway, why bother putting either of us through the pain?"

"I'll skip that Christmas party."

"Maybe next year."

So when we learned a few years back that our local autism support group lost the funding for their annual holiday party for families, my group of autism mama friends decided to organize and host it. I wrote about D'MAC planning the 1st party here.)

Having this chance to give back to our community means so much to all of us that we keep doing it, and it keeps getting bigger. And better. This year, we expected 100 children to come, and we were ready to make it an amazingly special day for them.

Everyone stepped up to the plate. SafetyNet by LoJack donated gifts for every single child and more pizzas than I have ever seen in my life. TILL sent out invitations to all the families in the city they knew affected by autism and to whom they had provided support in the past. They encouraged families to come and kept track of the ever growing guest list. They helped wrap and organize 100 presents, each appropriate for the deserving children.

A DJ friend who has generously run the show for the past 3 years spun Christmas and dance tunes and children of all ages twirled and flapped and frog hopped and jumped and yelled.

The West Roxbury YMCA, who already schedules programs specifically for our kiddos, came with a team and supplies ready to paint faces and do arts and crafts.

Parents let their guards down a little bit and let their children run around. They didn't have to be vigilant to make sure their children were being "appropriate". They just let their children be themselves. They hugged old friends they'd met through various services and therapies, they introduced themselves to other parents who are traveling the same journey. They sat and relaxed. They hung out at the bar and watched their beloved Tom Brady lead the Pats to victory (yes, of course there was a bar - this was a D'MAC party!)

Another friend played Santa to these children for the 3rd year in a row. He could have told one of his buddies it was their turn. It would have been so easy to let someone else do it. He came back. He looked around the crowded hall at 100 children and took his seat, ready to deliver on a very special promise. He took a picture with every single one of them and gave them each a present.

This was no mall Santa. He was patient and jolly. He was the real deal to 100 children, including my own 2 boys who had never come within 20 feet of Santa before.

And these are just a few of the things that I heard during, and after the party:

"I think my strongest feelings stemmed from the sense that we belonged there.....that we were truly among friends old and new, who understood and accepted us for who we really were..Our typical concerns about Daniel at a party or event did not exist because his limited understanding of boundaries would be accepted...there were NO boundaries and no one was judging us/him..."

"For most of these families this is the only chance they can have their child visit Santa. There are no trips to the mall, no waiting in line for Santa. If a child melts down, no judgements, no 'why is this so hard'. "

"Since I was the only thing standing in the way of the kids on line and Santa I spoke to a few of them and one whispered to me "I know this isn't the real Santa because he is in the North Pole but I'm not going to tell the little kids because that would be mean" and then he jumped up and down when Santa finally arrived. For our kids...literal thinkers and truth-talkers this was huge. He kept it to himself and got caught up in the excitement of Santa despite knowing the truth."

"It was truly heartwarming to see how excited my kids were about going this year, and then to see how much fun they had at the party. But mostly I was almost in tears seeing all the new families and how much those kids really loved it. Really special."

"This is the first party that Timmy has been able to hang at for awhile so it was fun for all four of us. Granted, he was sitting at a bar watching Tom Brady... his mama's son!"

"I was supposed to be on 'line control' for the Santa line. Mostly I just body-blocked for the photographer so he didn't get bumped. I can't tell you how many (non-verbal or barely verbal) kids that passed by in line grabbed my hand and just held it. They managed to say it all in that gesture. So sweet."

"As always this group never fails to deliver....and boy did you ever. Robbie & Ava had a blast even when he was in sensory overload! He just went outside w/ John for a few to organize himself & came back ready for more fun."

"I was so impressed with everyone's generosity. From the gifts, to the food, to Santa Claus, it was a great day. Especially impressed with all the Momma's & the Poppa's who worked hard organizing this so my gang could enjoy! A big thank you!"

"It meant a lot to see so many new faces, I know some are just starting this journey and well, if they walked away with a smile thinking I'm not alone, that's the best Christmas present!"

Unfortunately, it wasn't perfect for everyone. A few kids couldn't come into the hall because of the noise, or had to leave due to sensory overload. James made it 2 hours before he started pulling me to leave. There were no looks. I felt none of the anxiety that I always do with a public meltdown, because everyone understood.

And you know what came from those difficult times?

Instead of "this was too big and too much, next year we'll scale it back so it is easier for our own kids", it was "Next year we need a much bigger space, with more room to move, and a separate room for sensory breaks. There are more families that we need to bring".


We've already started working on it. We're meeting next week (for drinks at the Grotto, of course) to re-cap and start planning for next year.

Here are just some of the highlights from an unbelievably wonderful day.

Thanks so much for everyone who worked so hard to make it successful, including:
Pauline Lussier and SafetyNet by LoJack
Lynn Tougas and Joshua Lyons of TILL's Autism Support Team
Santa Mike O'Brien
DJ Paul Aube
Marion Kelly, Mary Carew-Lyons and The West Roxbury YMCA
Sophia's Grotto
Fornax Bread Company
John St. Amand and Jennifer Lawlor, photographers extraordinaire
Boston City Councilor-at-Large John R. Connolly
Boston City Councilor Matt O'Malley
Boston City Councilor Rob Consalvo

And to my amazingly incredible D'MAC family,
You moved mountains to make this special day possible for so many children you didn't even know, and you brought hope, understanding, support and love to every parent who walked through those doors. There are not enough thank yous in the universe for you all. xoxo

Moment of Truth Monday - Giving Thanks

My amazing friend (read all about her and my autism mama friends who saved me here) owns the fabulous Sophia's Grotto and is sending out a card for Thanksgiving. She decided to make it from kids - straight out of the mouths of babes.  I'm pretty much ruining her plan by posting this, but you'll see why I had to use it for my "Moment of Truth Monday". AND I don't think any of her peeps will see this to know. If they do, sorry Sonia (with a silent cheer that people actually read this;)

So I asked Johnny Drama what he was thankful for. His reply was typical Johnny. "I'm thankful that I never got coal for X-Mas (yes, he actually calls it X-Mas) and I never will".



James' answer was, well, I have no words. This is his post tonight anyway.

Without hesitating, he said: "I'm thankful I got picked to be in this family".



Me too Buddy.  More than you'll ever know.

Tearing Down the Wall

Yesterday was the first day that there was a hint of winter in the air. So, slacker mom that I am, I finally decided to unpack the pool bag. It was filled with typical things- a few empty bottles of sunscreen, kids' goggles and some toys. While I was taking them, out, I realized what a huge thing it was for me to be doing.

We've never had a "pool bag" before. Filled with typical things.

All the memories of this past summer, and of the last 8 summers, came flooding back, completely overwhelming me.

When James first started Early Intervention and was diagnosed on the autism spectrum, I was sure I could handle it all, and it wouldn't change my parenting style too much. I would keep doing all the same playgroups and would keep him in the world, surrounded by other kids. 

Soon though, I found myself cancelling trips to the aquarium, the children's museum, even the zoo around the corner from our house.

I started building a wall around us with each cancellation. With each "no thanks, I don't think so", the wall got higher and higher. By the time James was 8, I had created a fortress. I kept my boys inside it as much as I could. Summers were spent in the fenced in front yard with an inflatable pool. Outings were limited to therapy appointments and visits with other ASD families.  Always controlled and always with an escape plan in mind.

Poor Johnny was stuck with us even though he desperately wanted to get out. I had to say no to the playdate requests, because I knew I couldn't send him without his brother, and I knew his brother couldn't handle it.

I started to hate summer, and felt horribly guilty for feeling that way. What kind of mom was I that I didn't want to spend those supposed carefree days with my young sons, without the limitations and rules that go along with the school year?

We were becoming prisoners inside that fortress, only I couldn't see it. All I could see was the pain and the fear in James' eyes when confronted with something unexpected outside the wall, and I fiercely wanted to protect him.

This past summer, though, I finally started to break down the wall.

Some friends belonged to a pool club that was totally geared towards kids our boys' age. They suggested we join because Johnny had visited and loved it.  I was hesitant.  It was more like a water park than a pool.  It was huge, and there were so many kids.  I was sure it was going to be an incredibly expensive train wreck, but we decided to try it out, just for Johnny.  As summer got closer, I started dreading it, again.

The first day we went, I watched as Johnny took his brother by the hand and led him around the enormous wave pool.

A few days later, I watched James play with a friend. Splashing. Dunking. Chasing.

The second week, Johnny was scared of the obstacle course and was asking for my help. I got into the pool to hold him steady and heard a friend yell "Hey Smother!  Get outta there!" I laughed and got out to go join my friends, while I watched Johnny struggle in frustration. The next day he did the whole obstacle course. 30 times.

In August, I actually played tennis while my kids were in the wave pool. I don't know whose life I was leading, but it wasn't the one I had for the past 8 years, walled up with my boys away from the world, ruled by autism and anxiety.

We were the first ones in on our last day there, anxiously awaiting the arrival of a new friend and her sons. The pool manager approached James and handed him the keys to the pool. He instructed James to go around to the other side of the wave pool, put the key in the lock box and turn it.  I started to intervene, and I remembered the "Smother" comment. I backed off and held my breath a little.

I watched as James gave me a nervous look and then tentatively walked around the pool by himself. He fumbled and found the key hole, and struggled to turn the key. And he looked up to see the waves start rolling into the pool. He smiled. His brother cheered.

I turned and went to the desk to sign up for next summer.

I know we are always going to face obstacles and challenges, and some times are going to be very, very tough.  But going through the pool bag yesterday, I realized how far James has come over the past 8 years. 

I also realized how far I've come. 

I think now I'm going to be able to tear down the wall, day by day, and let the outside world in.  He's playing soccer this fall, and we are going to try skiing this winter. And for the first time in 8 years, I'm already excited about spending next summer with my boys.

I'm going to keep the pool bag visible though, just for those days when I need a little extra help.

The Real Breakthrough at the Beach

When I first started writing this blog about our journey back in April,  I thought I would do a little autism awareness project and get some people to understand kids like James (and their families) a little bit better.  I never expected it to become so important to me.  I've found that telling our story is both empowering and healing, and I feel a million times better about myself as both a parent and a person since I've started writing.

I wonder if James discovered the same thing about the power of communication. 

Last week James and I had our most meaningful conversation ever, and I posted about how proud I was of him to be able to communicate his feelings to me for the first time (A Wave of Words, An Ocean of Meaning).  Now understanding why he was so unhappy at the beach, I was perfectly content to plan future vacations near pools.

Then last Friday we were invited to spend the day with friends on the Cape.  Hurricane Irene was on her way up, and I knew the waves were going to be rough, so I asked if we could go to a bayside beach.  When we got there and I saw how excited her kids were to go to a beach with waves, I reluctantly agreed, expecting the day to be a long one.

It was windy and hazy.  The waves were taller than James.  Hanging out just 30 yards off shore were the two most enormous seals I've ever seen.  People were talking about sharks, and the Coast Guard had both a boat and helicopter scanning the surf.

Standing no more than ankle deep in the water, James' gripped my hand so hard it hurt.  I envisioned how the rest of the day was going to go, and sighed. 

An hour later, I once again experienced the healing and empowerment that can come with telling one's story. 

This was what I saw. I'll never forget how beautiful that moment was.
(look for James in the orange shirt.  Johnny is in yellow).

Dunkin' Go Nuts (or how to react when your ASD child plays typically)

James tried to drown his friend the other day, and I cheered.

OK, that is a bit of an overstatement. James and his friend were horsing around in the water, and I saw James dunk his friend totally under water. And my first reaction was to cheer.

My immediate second reaction was to reprimand him and tell him to never do that again (but inside, I was still cheering a little bit). 

I love his friend. I love his friend's mom, who has become one of my closest friends (see "How D'MAC Found my Voice").   But when you have a child with a disability that makes it very difficult for him to play like his peers, if he does, you cheer.  No matter what it is that he does. 

That's how I knew my friend would be cheering too, even though her boy was the one who went under.

When James was 4, there was an older (7ish?) boy on top of a slide, playing King of the Hill.  He roared at James to get away, with an "I'm not playing with you" scowl on his face. James kept going around the slide, pretending to go towards the boy, giggling and happy.  The boy became increasingly angry and looked like he was about to smack him as he screamed "Get away from here!  You aren't playing!"  I had to quickly grab James and pull him away (I wanted to lash out at the kid, but part of me wondered if he was on the Spectrum also, they were both so clearly missing each other's signals.) 

I worry constantly about how impossible it is for James to interpret what other people mean, and how difficult it is for him to play like a typical kid.  I know as difficult as it is now, it is only going to get harder for him as he grows and social relationships become more complex.

So when I saw James and his friend fighting in the water, getting pushed around, and pushing in return, with the lifeguard intervening and yelling at them, I had to cheer.

I had to cheer because last year I never thought I would see him doing this, and because my friend and I were the only ones at the pool who knew, at that moment, that both our boys had autism.

Angry, Vindicating, Game Changing Birds

I have a lot of friends who don't let their kids play video games or completely limit it, and I totally respect that because it works out best for their families.  However, I'm on the opposite end of the video game spectrum.  I've not only been allowing James to play Wii and DSi, I often encourage him to do so (especially at 6 am!) and download bazillions of apps on the iTouch for him because when he is playing them, he's problem solving and being completely independent.  The boy who doesn't think he can put his own shirt flies through every level of wii lego Indiana Jones and Batman.  He creates elaborate new worlds and gains confidence.  It is really quite amazing to watch him play some of these games, but sometimes I feel conflicted about my "lack of discipline".  Not today though.

Johnny had gymnastics today.  It is the one special thing that he has been able to do since he was 3, and he loves it.  I make sure he always gets to class, because he's spent so much time getting dragged around to James's appointments, I feel it is the least we can do to let him have something that is just his.  Plus, it turns out, he's pretty damn good at it.

James, however, hates gymnastics days.  It is a huge, loud warehouse facility.  Music blares, kids scream, coaches yell.   There is a constant thumping of  handsprings going across the mats below us.  It is usually very hot and it ALWAYS smells like sweat and socks.  James can't stand to be in the place, and usually needs to sit on my lap or my legs, causing me to sit in pain for the hour.  I watch the clock and try to watch Johnny, but I'm usually focused on making sure things stay calm directly around us.

The incredibly complex thing about James is that he really wants to connect with people and tries very hard at it, he just has a hard time figuring out HOW to do it.  One time when kids were playing superheroes, he announced he was "Super Traffic Light".  He totally thought he was playing with them and they were completely ignoring him.  I was devastated watching it.  He always asks the same questions over and over, even if a kid has already answered.  Many of the kids he's tried to talk to at gymnastics have given him funny looks and then gone off to play with someone else.  James always looks sad when he is there, and I'm always on edge.

As a distraction, I always let James play video games during the hour.  I get more than a few disapproving looks from moms who have brought homework or books for their kids, and I constantly want to stare right back and yell "YOU HAVE NO IDEA WHAT HE IS GOING THROUGH TO JUST SIT HERE, OR WHAT HE ALREADY HAD TO DO TO GET THROUGH THE DAY.  JUST LEAVE US ALONE AND WATCH YOUR OWN KID!"

But, of course, I don't.  I just sit there and put my chin on his shoulder and watch the screen with him, feeling guilty, angry, and alone.

So today, when James was sitting on my lap creating amazing obstacle courses in Jelly Car 2, a boy came and sat down about 5 feet away playing Angry Birds on an iPhone.  James inched his way off me and was soon sitting about halfway in between us, and started telling the boy everything he knew about Angry Birds and how good he was at it. Then he started asking the boy questions, and I felt that familiar pit in my stomach. But instead of moving away, the boy answered them.  And asked James about how get past the level.  Soon they were sitting side by side, both playing Angry Birds and chatting away about the game like they'd known each other for years.  Then, all of a sudden, the boy just got up and left and my heart sank.

Next thing I knew, the boy came back and there were 4 boys with him, 2 of whom James previously tried to "friend".  The boy said "My mom got me the real one - the one you have!  Want to see?"  and to my utter amazement, they all huddled around, watching the game and taking turns playing.  I just sat there watching them when James looked up.  He gave me a huge smile, and we both knew he really was a superhero.

The Power of One

He read a book. On his own. Then, he came and told me he did it.  This morning.  James read a book.  

JAMES READ A BOOK AND THEN HE TOLD ME HE DID IT!

I heard him in his room, talking to himself.  Then I realized he was reading the book that we received yesterday as a present.  I stood in shock listening.  Then, he ran in my room with a giant smile on his face and said "I did it!  I read a book and I knew all the words!"

1st grade has been very difficult for him.  Figuring out sounds and phonics have always been a struggle. James would see the first letter of a word, any word, and begin to panic, then just run through all the words he knew instead of trying to figure out what the word might be.  Homework has been excruciating for both of us.  Because James has anticipatory anxiety and is afraid to be put on the spot to answer a question, he would often meltdown trying to get through a book.  In fact, the last time he willingly sat down with a book, he was 3, and it was a picture book about cats that he was showing to Owen.

"He might need something to help him access the world".  We heard that repeatedly from teachers and therapists from the time he was first evaluated for school.  I would never agree to anxiety medication, I was nervous about long term side - effects, about giving adult medicine to my small child who was unable to explain what it might be doing to him. What if it also took away the things that made James be James? We tried play therapy, self-coping skills, calming techniques, everything we could think of to help.  The techniques helped a little, but he was never able to get beyond being afraid.

His anxiety had gotten so bad this past winter that Tony and I decided we couldn't help him enough, he needed more.  What if there was something that could simply make the fears quiet enough to allow him to live without worrying all the time, about everything?  We asked James if there was a medicine he could take that would make him less nervous would he would want to try it, and he said "yes". So 2 weeks ago today, James and I went to the pharmacologist.

The past 2 weeks, I've been watching James very closely.  He's become more sensory, running more laps, licking his hands and putting everything up to his mouth.  He is asking to be brushed (a calming technique where we brush his skin with a surgical brush) that we used when he was much younger.  He also seems to be more chatty, and talks about how school isn't so hard anymore, how 1st grade isn't that bad.  I keep saying it's been less than 2 weeks, he must be coming out of a bad cycle and the timing may just be coincidental.  I've been wondering if I made the wrong decision, what if we medicated him just as he was starting to feel stronger and now he has to deal with heightened sensory issues?  What if we didn't believe in him enough and just needed to give him some more time?  How could I not believe in my own child enough that I actually decided to put him on medication?

Then, he read a book. On his own. And he came and told me he did it.  This morning.  James read a book.  And right then, I realized that he was finally able to access the world.

"When men can be made to hope, then they can be made to win."

— Bryce Courtenay (The Power of One)