When I picked Teddy up from school Friday, I had the chance to talk to his para who is working in the classroom all November. I asked how his day was, and she said he got art twice that day. He went with the first grader students, stayed for about 15 minutes to complete his project and then left while the rest of them finished class. He also went to his adapted art class with the other students in his special needs classroom. (It's weird, I'm not sure what to call his class ...)
She also mentioned that on Wednesday he went to all of gym class with the first graders. She said they ran for 7 minutes, and that Teddy ran with them the entire time. He was tired after gym class, but it was so wonderful to hear that he had the opportunity to participate for all gym class. See, I watched Teddy's adapted physical education class once, and it was like watching a room of ping pong balls bouncing around the gym because each child needed essentially 1:1 support to successfully follow the instructions for the activity. So I fully understand the effort it takes to include Teddy in a gym class with 20 other first grade students, but I feel it's so critical to his development, acceptance, learning and social inclusion.
The thing that really gets me about that gym class is that this is the child who we wondered and worried for the first nearly three years of his life whether he would ever walk independently. This same child ran with his friends for the entire 7 minutes of running in gym class. Now, that is beyond amazing.
This inclusion with his first grade peers takes effort, no doubt. It also takes a lot of coordination with his teachers, both in his classroom and the first grade teacher. It takes the principal listening to my concerns and the director of special education as well. It takes a whole team of people to make sure the supports are there, so Teddy can run with the other kids. It's something relatively simple that makes me so happy.
And, in case you wonder why we doubted whether he'd ever walk, here's the link to his first independent steps caught on camera. Our little drunk monkey has sobered up through the years, but he still walks like he's had a few too many. Maybe that's why he feels so little pain ...
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
Sunday, November 10, 2019
Double the Art, Double the Fun
Labels:
acceptance,
accommodation,
accomplishment,
running,
school,
walking
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