Aside from the zipper, note the wear on the shoe. |
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.
Tuesday, January 23, 2024
Shoe Sponsorship
Monday, January 15, 2024
Winter is Here
Friday, January 5, 2024
IEP
It's been more than a month since Teddy's IEP, and I'm finally getting to recap it. His IEP is his individualized education plan, designed to support his needs, which requires meeting with his entire team at least once a year.
This IEP came at a perfect time, as it was shortly after his most recent bite from a fellow classmate, so we focused primarily on his safety at school as well as his integration with his 5th grade peers.
It was a full house for this IEP, with more people than any other time, even though we were a person short because Dave stayed home with a sick Teddy. (In an ideal world, Teddy would be a part of his IEP meetings to have his voice heard, but that's less than conducive. Trust me. I've tried it.) Given the issues we've been having, the principal joined the meeting, along with a student teacher there for the experience. Then it was the usual crew: his intentional teacher, his 5th grade teacher, adapted PE, OT, PT, speech, nurse, assistive technology and the special education team member. Let's just say I asked for introductions to refresh my memory as I only see nursing and assistive technology once a year, and it's a lot to keep track of.
I was pleasantly surprised with how the IEP started, as the team proposed a schedule that goes from about 20-40 minutes a day of inclusion to about 2.5 hours of integration. There was only one other opportunity for integration that I raised (thanks to my conversations with his 4th grade teacher, who happens to know him extremely well, about what might work). Instead of only morning meeting and music class, Teddy's new schedule includes breakfast, morning meeting, snack, social studies/science, lunch, recess, music, art and the occasional gym class.
All smiles for the first lunch in the lunchroom with 5th grade! |
Whew, that's almost exhausting to type, much less to be the paraprofessional supporting Teddy in all this integration. I know it's work to help Teddy integrate, and it won't be perfect. It won't work every day and every situation as planned. But the more time he spends with his 5th grade peers, the more he will model their appropriate social behaviors. He proved this last year by learning to raise his hand at appropriate times because everyone else was. The more time he spends in his intentional classroom with behaviors that aren't appropriate, the more likely he is to mimic those behaviors. Additionally, and most importantly to us, he doesn't get hurt in the 5th grade classroom whereas he's targeted in his classroom. (To be fair, he's targeted because he has no personal space bubble and doesn't feel others do either.)
It's been an adjustment to spend that much time transitioning, but it's been neat to see how excited Teddy was to spend more time in 5th grade. I'm not sure if gym has happened yet, but that was a neat bonus that his adapted PE teacher wanted to try without being aware of the rest of the integration discussion. This is particularly cool because it was initiated because Teddy has made so much progress in his skills (both physical and social) that his teacher feels like he could be successful in certain lessons.
Needless to say, we appreciate all the work his team puts in to make Teddy successful. It takes a village to support Teddy. We showed our appreciation by bringing them lunch for the first day back at school - subs, chips and brownies, homemade, of course. And how many people did we feed? A village of 17.
Plus a brownie his team gave Teddy because he asked so clearly and nicely.