World CDG Day Recapt

It's been a month since World CDG Day, and I wanted to share how incredible the day was. I had every intention of creating a collage of all the support for Teddy and others with green shirts but simply never got there. But every picture shared, every shirt worn, added a bit of awareness and reminded our family how much love there is for Teddy and our entire family.

It was a day of worldwide connection with our other PIGN families through the blog post sharing a number of our children, along with a video showcasing even more. It's incredible to see how large our group has grown since we first found it in December of 2015 when there were about 5 families.

What made my heart nearly burst with pride, though, was AJ's advocacy that day. He spent the month prior coordinating with everyone from the principal to all the 7th grade science teachers to Teddy's teacher to arrange presentations for all 7th graders during their science classes. He was able to share all about CDG, talk about what it's like for Teddy and him and promote the research and fundraising project he's doing for the research. 

AJ is developing really good speaking skills for his age.

AJ did phenomenal! He presented 6 times, spending most of the class period with his presentation and the really good QA sessions that followed. The principal even joined for his first presentation! It was really neat to hear the thoughtful and insightful (and random) questions from 7th graders. 

One surprise in his presentation was that he added a slide about bullying. AJ was brave enough to share his personal experiences in feeling hurt and sad when others laugh at Teddy's vocalizations in the hallway or make comments, even if they don't intend to be mean. I thought this was incredibly brave of him.

At lunch AJ and Teddy teamed up to hand out CDG cookies to all the 7th graders. Teddy did amazing in handing out cookies with AJ's support. One of the coolest things was that a couple boys came up, and assumed they were coming for cookies. I told them they'd have to wait until their table was dismissed. They said, "We're just coming to say hi to Teddy like AJ encouraged us to do." They smiled, waved and said hi before heading back to their table. 

Teddy loved his job of handing out cookies.

It was such a neat experience, and AJ is already excited about possibly presenting to all the 7th graders again next year as they will be Teddy's peers.

It was really special to be a part of this day.

Improvisation

This past weekend I noticed Teddy got a bit creative to entertain himself while we were driving. He took the string of his lacing toy, inserted one end into the charging port of his phone and inserted the other end into his ear. He created his own ear buds for his phone, a modern spin on the old-school telephone game.

This kid cracks me up.

Really creative approach to make your own headphones.

Summer Bucket List

It was a year ago that I was in tears, struggling with the transition for Teddy from the elementary school where he'd been for 6 years (5 with the same teacher) to a middle school that none of his elementary friends would attend. I knew it would be fine, but it was hard to say goodbye, especially with Sigrid there to fill us in on the daily shenanigans.

While it was a bit bumpy to get the school year started, I can confidently say that Teddy is rocking middle school with the support of his team. He has developed some great friendships that go beyond the classroom, and there's so much excitement to see his friends at after-school activities. He's made friends with his peers, and, of course, he's befriended his paras, teacher, therapists, nurses, and more. 

It's clear how much his team has learned about Teddy this past year - and how well our communication system is working with a non-speaking child - to see his summer bucket list. They absolutely nailed it!

This is perfectly Teddy!

Aside from missing a pontoon boat ride, this list is Teddy. It's a little thing, a bucket list activity that so many kids do this time of year, that captures the big, important things ... that his team knows him, understands him and cares for him.