He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.

This is James, and this is our story.

Wednesday, August 13, 2014

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. 

Monday, August 11, 2014

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.

Sunday, July 6, 2014

Prelude to a Post

I haven't been here for a while, and I've missed it.

I love this blog. You have no idea how much it means to me that you even take the time to read these posts, but I'm selfish. I definitely write this more for me than for anyone else. It is incredibly empowering and cathartic to sort through my feelings and write it all here. What started out as a small month long autism awareness project has morphed into something I care about deeply and am very proud of. I don't think I'd be the same person I am today if I hadn't taken my friend's advice a few years back and started to write this journal.

But I've been feeling a little bit stuck lately.

I've always been completely honest about my family's life while sharing these few carefully chosen snapshots, and I try to only post things that I feel are respectful towards everyone in my family. James especially.

James has never liked receiving attention of any kind or being singled out, and I get that. Boy, do I get that. But apparently I am that mom that is always there with my phone ready to take a picture and tell the world what great task he has just accomplished, and because of that I've made him even more self-conscious and he has started asking me not to share specific things. Like basically anything great he does, which sucks because he does a lot of really great things. He does a lot of annoying things too (because he is 11) but most of the things he says and does I want to record and keep with me forever and ever. And share with the entire world.

So, I stopped writing here publicly while I tried to figure out how to keep sharing these stories that mean so much to me while knowing that he is uncomfortable having people talk about him in general.

I've finally decided that as long as I continue to write in a respectful way and not project my own feelings on to my boys, I still can share things about my life and my family from my own perspective in this journal. I trust myself to only share the stories that both my boys will be happy to read when they are older. I want them to have the opportunity to read my journal as adults - to see themselves as I see them and read the words I use to describe them.

After being gone for such a long time, I feel like I'm kind of starting over here. And I'm excited to start again because I have a lot of stories to fill these pages.