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.

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.


Anonymous said...

I read this and wept - first tears of anticipation for the fears James would face and then tears of joy for his courage and accomplishment. Finally the tears were for all those who love him so much.

Cheryl Pollock Stober said...

This is so great, Kristen. Glad you're both able to experience this joy.

Jean Nicol said...

Thanks so much for sharing this story that will hopefully inspire others to always TRY ~ expect that it is possible!