Tuesday, August 16, 2016

A Letter to His Teachers

I firmly believe God's been doing his best to prepare me for the honor and challenges of being Teddy's mom well before Teddy was born. In the early months after I had AJ, I stumbled across a blog called Noah's Dad, which details a family's unexpected journey with Down Syndrome. I found so many of the posts insightful and thought how beneficial this information would be to another family in a similar situation. Although Teddy does not share the same diagnosis, there's enough parallels to give me hope, inspiration and a few ideas.

One thing Noah's parents did before Noah entered a traditional classroom was to send a letter to his teachers to help them better understand him. I thought this was an excellent idea. It's something more personal (and concise) than the lengthy IEP. So with school starting in a couple weeks, here's the letter Teddy's teachers will receive:

We wanted to introduce you to our son Teddy. We know you have his ISP, but there’s more to him than what’s documented there.

Teddy has a rare genetic disorder called Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1. We finally learned his diagnosis in November 2015 after nearly 2 years of searching for answer after his first seizures. At the time, we were told Teddy was the 15th child known in the entire world with this disorder, which was only discovered by the medical field in 2011. Our joke became that Teddy wasn’t one in a million. He’s more like one in a half billion.

Essentially, Teddy’s genetic mutations affect his body’s ability to send messages and connect information because the pathways and processes don’t function typically. Part of his diagnosis includes hypotonia. This doesn’t mean he is weak, but it means his muscles are more relaxed and he has to work harder than you or I to support his own body. You will notice he is a bit floppy, for lack of a better word, and tends to choose positions that help him support himself. 

Teddy is curious about the world around him and likes to explore, although his methods are not always appropriate. Teddy enjoys the feel of items in his mouth, so we try to redirect him to something appropriate like chewelry if he has that need. Teddy likes to climb, so you may want to watch your bookcases, tables and anything else you may not realize he will believe is a mountain for him to scale. He’s at the point where he believes the word “no” means that he should laugh and continue whatever action prompted the word. 

One of the things that makes Teddy unique is he has an extremely high pain threshold. He may cry when his feelings are hurt or when he’s tired, but he rarely cries when he’s hurt (or he will cry for only a brief time where most other children would cry for much longer). This sometimes means we find bruises or scrapes without knowing exactly when they occurred because Teddy never cried to let us know something hurt. 

The most important thing about our son is that he is a child first just like any other child. He wants to play and learn. If you have any questions about Teddy or his genetic disorder, we hope you feel comfortable enough to ask us. We have created a blog about Teddy’s journey, which you can find at www.teddystriumphs.blogspot.com if you’re interested. 

We are very proud of our son and love him more than we could ever express. Thanks for the role you are playing in his life, and thank you for all you do to invest in our children. We appreciate you, and we’re so excited for the possibilities for Teddy as you work with him this year.

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