We finally had Teddy's parent teacher conference this evening. His teacher recognized that we didn't have the opportunity to meet his whole team at the Play to Learn Night back in October, so we scheduled conference. This was actually the second attempt at this conference due to a communication issue the first time around that left us rather frustrated.
I'm grateful we had the opportunity to sit down to discuss how Teddy is doing. This was our first time really meeting his PT (aside from a quick introduction in a parking lot) or meeting his OT. His OT and PT most often tag-team therapy with Teddy because it's most productive for all of them to work together. It allows his PT to focus on proper body positioning while his OT engages him in fine motor activities to keep him involved in the activity as long as possible. His OT said that Teddy went from spending seconds on a task at the beginning of school to now working for 7 to 8 minutes.
His OT shared the insight that Teddy does best with vertical positioning for activities, such as an easel, whiteboard or simply angling a puzzle more upright. She said she notices better attention and more success in completing tasks. This wasn't something we'd ever considered, but we're already discussing placing a whiteboard in our basement playroom.
It was interesting to hear that Teddy's help with vacuuming is actually really great therapy for him because it requires a number of muscle groups and motor skills. Apparently we should vacuum more often. If only someone would crumble food, particularly frozen pancakes, all around our house to give us a good reason to vacuum. Oh, wait ...
His team was excited to see his bike, and we're excited for him to have that at school to use. I'm not so secretly hoping they can teach him how to steer, although his PT called the guide bar in front of his bike a jousting stick. She apparently knows Teddy quite well already. She's going to send us some ideas of adapted seating for meals to hopefully allow Teddy to feel like a big kid at the table while still supporting and quite honestly containing him to help him focus on eating. That would be extremely helpful since the booster seat is really not that functional for him anymore.
Perhaps the most exciting piece of the conference was discussing an iPad with Proloquo 2 Go for Teddy. Proloquo 2 Go is an incredibly flexible and comprehensive speech app that would give Teddy more ability to communicate. It also is incredibly user friendly and easy for us to adapt and change to various situations rather than our current method of taking a photograph, laminating it, adding velcro and using it in his book. There will be a learning curve, but our hope is that by starting this now that Teddy will have much more success communicating with it a few years down the road.
We used this meeting to bring up our concerns that Teddy arrives to school an average of 5 minutes late nearly every day. This is extremely frustrating to us because the only consistent time that Teddy integrates is during outside play, which is the first 15-20 minutes of the day. That means he's missing 1/4 to 1/3 of his integration opportunity each day. So, his teacher is going to ask the principal of Early Learning to reach out to the bus company. Just to be certain it's addressed, I e-mailed the principal after our meeting as well to express our concerns and attempts to resolve this with the bus company.
The integration piece is important to us because we want Teddy to have the opportunity to make friends and be an active part of his school. It sounds like other children are excited to see him during outside play and want to play with him, which is great. It's tough because of the needs of all the children in Teddy's class, there's not someone with him 1:1 to help him integrate in the traditional class on a regular basis. His teacher is working on developing Teddy's ability to focus and play well with a few toys that can be taken next door for him to use to have meaningful interaction. That sounds great ... now I want to make sure it happens. Today was the first day I remember getting the note that Teddy "wasn't ready to integrate today and will try again tomorrow." Today was probably also the first day that there was no outdoor recess due to weather.
But, to end with a positive note on interacting with others, his OT mentioned there's another boy who mentions Teddy every time she works with him. She said he adores Teddy and says they ride the bus together. I knew instantly that she was talking about Max. Now, if only Teddy had the opportunity to build that type of relationship with more kids ... without sitting on them or taking their toys.
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.
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