Before Teddy turned one, we were referred to our county's Birth to Three program, which is the early intervention program in Wisconsin. I distinctly recall the first assessment where Teddy was his happy Teddy self to be assessed by three pretty ladies but supported himself similar to Jello without a mold. We were happy to have some supports in place for Teddy and to receive direction on how to best help him, but we were also nervous because this was our first foray into any type of supports beyond medical visits.
For me, it served as a reality check that my child qualified for supports. (Let's just say he didn't barely squeak through the screening requirements ... there was no doubt he qualified.) It was hard to read the first reports that showed how significant his delays were in each and every area, barely registering at all on at least one of the scales. As heartbreaking as those reports were, we were also excited to see what Birth to Three would do for Teddy.
As it turns out, Birth to Three became perhaps one of my favorite therapy visits, if for no other reason than these appointments were the easiest. Teddy's team came to our house. At first, I worried about having a clean house and eventually settled on a house with the toys mostly picked up in the room where we'd play ... most of the time ... then some of the time. These appointments carried the least amount of stress because the team always asked if there was anything else we needed and often pointed us to resources we didn't know existed.
My absolute favorite part, though, was how excited they were for each and every one of Teddy's accomplishments. It felt like his outpatient therapists were pleased when he hit a goal but immediately set a new one. I understand that's what funding requires, but I just wanted to enjoy the moment. Birth to Three was where it was pure celebration for that day instead of "Here's his next goal."
When I look back at his first Individual Family Support Plan, I read his first goals we set for him: to support himself while hiking in a backback carrier, highchair or sled with AJ's assistance. Teddy got himself into a sitting position independently the first time on his first birthday, and how far he's come since then. I remember him slumping to the side in his highchair and re-positioning him multiple times each meal to an upright position. Now, this same little boy is walking nearly across a room by himself.
When Teddy's Birth to Three team asked if we had any questions on his last meeting before his birthday, my reply was, "Can't we pretend he's not turning three?" They laughed, but we all felt the same way. They've been some of Teddy's biggest supporters, but in a month he's off to school to see what other amazing things he can do.
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.
Monday, August 8, 2016
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