This post is tough to write, quite simply, because tonight was tough. I think the reason why is because expectations did not match reality.
Teddy's school had a Family Play to Learn Night that was billed as an opportunity to come explore his classroom with him with the opportunity to have a 20-minute slot to meet individually with his teacher. I had assumed it was open to everyone to come play and explore and then have some focused time to hear specifically about what Teddy does in the classroom.
So we arrived about 30 minutes before our scheduled time. The classroom was empty except for his teacher when we arrived, and she welcomed us. She said she could meet with us right away and that we didn't need to wait, which was nice because Teddy doesn't wait well.
When her opening statements were that the classroom was completely rearranged because of Teddy, that's when I realized this wasn't a night of family play. It was really his fall conference, without any of his therapists (who had attended all his conferences last year).
His teacher was pleasant and positive, emphasizing some of the progress that Teddy has made and adaptations that have helped him, but the message was still there that Teddy was the reason the room was rearranged, Teddy has a constant adult presence (which is largely the reason a second aide was added to the classroom) and that Teddy has been integrated into the traditional 4k classroom on limited occasions (instead of daily like some of his more advanced peers). Tack on the fact that Teddy typically arrives 5-10 minutes late because the bus is consistently late, which she said was not that big of deal because it was outside play time.
Honestly, him missing outside play time, which is his favorite thing, is a problem to me. It's even more of a problem to me because she said that recess is how the students in the traditional 4k class know Teddy ... if that's his only form of daily integration, why does he have to be shortchanged because the bus can't get him there on time every day?
His teacher said that even though it's only October that she's
thinking ahead to next year. She approached the question of whether we
were open to Teddy going to a different school that his home school (in a really tactful manner). I acknowledged that our hope is that both boys attend the same school, which is why we were trying to figure that out last spring already and were essentially told we'd look at kindergarten placement after 4k not all at once. At that same time, we were also told that students with needs similar to Teddy's have been successful at his home school.
Ugh, it just wasn't what I was expecting. I expected AJ and Teddy to get to play together and have some conversation about what his days looked like to hear his routines. Instead we got nearly an hour (and I truly appreciate that amount of time, I do) of the challenges and some of the possible solutions they're working to implement. I got the names of Teddy's OT and PT (for the first time!) and his aides. He's made progress, and there's definitely a desire to help Teddy succeed. There was really a lot of good, but I wasn't mentally prepared for it and had tears running down my face as soon as we exited the school.
I think had I realized this was his conference for his progress report that we'll get in a few weeks, that I would have mentally approached it differently. I don't know what else to say other than my favorite verse, Romans 12:12.
Let your hope keep you joyful, be patient in your troubles and pray at all times.
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, October 24, 2017
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