Celebrating Simon
Last Thursday Simon finished 8th grade.
As I thought of all the different angles and lenses through which I could tell you this story, the one I came back to again and again is about celebrating.
When Simon was diagnosed with autism (around 2.5 to 3 years old) we had no idea what that meant for the years ahead. The beginning, right after the diagnosis, was so very hard. So many questions with no answers and we are the kind of people who like answers. We worried about everything. We worried he would reach a certain point in his development and not move past it. We worried about how other people and his peers would treat him. We worried about how he would treat his peers. We worried about what his life would look like twenty years down the road and two months from now.
If there was something to worry about we probably worried about it.
And yet, very early on we made an important decision that made a difference for all of us. Rather than hyper-focusing on all our worries and fears and what-if's we focused on one simple thing: helping him find "success" in whatever that was going to mean to him at each step along the way. And with every little success we celebrated. Most of all though, we simply celebrated him, and still do, for who he is vs. trying to make him into someone he is not. Memory keeping has been one of the most visible ways I have celebrated Simon over the years and I can tell you without a doubt it has made a difference.
Because isn't that what we all want in our lives? People to celebrate and love us simply for who we are - for the crazy combination of our quirks and awesomeness.
As we lovingly say around here, go Simon go.
Over the years we've gotten really good at picking battles. Some weeks and months and years have been focused on behavior issues, some on working through transitions, some on academic pieces, some on social supports, some on regulating screen time, some on encouraging a wider range of foods, some on establishing and maintaining routines, some on physical activity, some on managing tics and anxiety, and in other times we've simply rested and just let it all be. There is no way we could ever deal with everything all at the same time. Instead we've focused on what was most needed at any particular time and celebrated the heck out of every little success.
One day at a time. One issue at a time. One month at a time. One year at a time.
This is what we continue to do today as well.
Early on we also learned the importance of a team. The people sitting around the table - either in the classroom or in our homes - have been so very important along the way in all coming together to celebrate Simon for being Simon (and often times to strategize how to best help him find successes in any given situation via pre-teaching, redirection, etc). For us that included family and friends and teachers and supporters and mentors both in and out of the classroom. It's included Katie & Peter. It's included my parents and Chris' parents. Later on it included Tiffany & her family and then Aaron and his children. It includes local friends who have embraced him as a friend especially now that he is starting to desire to communicate with them more and more. It has even included so many of you who have cheered him on over the years as I've shared pieces of his story in this space.
He is ridiculously loved and celebrated and I'm so thankful for that.
We have also learned very acutely that our voices do matter and, as people told me from the very beginning, we are his best advocates. We know the value of clear communication and the value of challenging our own assumptions. We have also learned, as is true in so many things, that there is no right or wrong answers for what is best for each individual kid. We still have fears. We don't want to underestimate him and we don't want to overestimate him. We still don't know how the next chapters will unfold.
What we do know is that we will continue to show up and continue to celebrate every little thing every step of the way.
I want to publicly thank Simon's amazing (and that isn't a word to be thrown around lightly) main teacher for the last three years: Amy Burrows. For the last 20 years she has tirelessly worked at this middle school with kids with a wide range of special needs as their teacher, their advocate, their cheerleader, and their friend. Amy was a big reason we wanted Simon placed at this middle school in the beginning based on her reputation as one of the best. We felt very, very lucky that he was able to learn from her because what he learned was so much more than academics. She is retiring this year after impacting so many lives in the most positive ways. We all cried.
Amy, thank you for sharing you gift with our family.
This kid.
He makes people smile. If you get the pleasure of meeting him these days he will shake your hand and say, "Hi. My name is Simon. Do you have a dog?"
He makes other people better people just by knowing him.
He is loving and kind and wants to connect with others.
Especially by telling you the entire last episode of whatever show it was he just watched.
His teachers and administrators absolutely cared for him and cheered him on in all the best ways, including when it was hard.
He is leaving middle school happy and excited for high school.
Simon, you are a gift.
