Celebrating Simon
Tags:
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.
Comments
Sign in or sign up to comment.
98 comments
Love you all so much.
Replies to carriecolbert
Sign in or sign up to reply.
Wonderful post... I have watched him grow through the years and I am so happy for you all today!! Simon-congratulations buddy.. My name is Jan and I have a chocolate lab named Max...He is rather silly old fart.. who loves to go for car rides and thinks he is human! He sleeps ALOT and loves a good bone. He once got in a fight with a COUGAR and has the scar to prove it..
Replies to murrjani
Sign in or sign up to reply.
CONGRATS SIMON!!!!! Have a great summer and a BLAST in high school!!
Replies to peggy1958sue
Sign in or sign up to reply.
Love the moments captured here... hard to read without getting teary-eyed! Can't wait to see what you create with this story.
Replies to papergoddess
Sign in or sign up to reply.
Congratulations to Simon and to you, Chris and the entire "family team." We have all watched Simon grow up here on your blog but we have also watched you guide Simon in the right direction. He's a great kid and we are all so proud of him and his success. He will do great in high school because of the positive structure he gets from you! Wonderful post, Ali! Thank you for sharing! Makes me smile and cry at the same time!
Replies to jstock17
Sign in or sign up to reply.
Hi, Simon! My name is Becky. We have a very white, very fluffy Samoyed named Mishka. Samoyed dogs are called the "smiley dogs" because they always look like they are smiling, and they are full of love. Congratulations to you, Simon! And to your wonderful, caring family, friends, and support teams. I have followed your Mom's stories about you since Creating Keepsakes when you were just a tot. Wow! Now onto high school. Go! Simon Go! Come visit sometime at Salishan, and we'll walk Mishka on the beach!
Replies to sneakerwaves
Sign in or sign up to reply.
Congrats Ali. And what an amazing story. yeah for you all.
Replies to irenespie
Sign in or sign up to reply.
Adding my congrats and happy tears, too! This was such a beautiful tribute to Simon. My daughter also just graduated from middle school. She has struggled with severe anxiety and other issues the past two years. So much of what you wrote I could relate to. Here's to high school and continued success!!!
Replies to MelanySMiller
Sign in or sign up to reply.
Congrats to Simon!!! Congrats to you too, Ali for being a wonderful, insightful mom and advocate for him. As a fellow mom of a son on the spectrum, I gather inspiration from your posts and strength to think positively and to continue the work of advocating and celebrating every success. Your story is beautiful. Thanks for sharing!
Replies to hiltonp
Sign in or sign up to reply.
Hi Simon! We just watched Zootopia and it was so cool. I have two dogs and one cat. Lucy is a doxie and Jazz is part doxie and part labrador. She is very furry and her tail drags on the ground when we take her for a walk. There are leaves in her tail when we get home. I loved seeing your pictures at graduation. That must have been kind of scary but you looked so happy. Go Simon Go!
Replies to gramiami
Sign in or sign up to reply.
Hello, Simon, and congratulations! I have watched you grow from the time you were 2-ish through your mother's scrapbooking. Although I have never met you face to face, I feel I know you. I have a rescue dog named Fritz who is part poodle and part ?. He only weighs 13 pounds. Ali, I am such a fan of yours as a scrapbooker and as a person. You are an inspiration. Congratulations to you and your 'tribe' for nurturing such a great kid.
Replies to pammc
Sign in or sign up to reply.
What a beautiful post, Ali and what an incredible son you have! I've loved seeing him grow up through the years and although I've never had the privilege of meeting him just yet, I am SO proud of him! GO SIMON GO! XO!
Replies to KProffitt
Sign in or sign up to reply.
Go, Simon, go. #fellowASDmama
Replies to platoj
Sign in or sign up to reply.
What a beautiful post. Well done Simon! And well done Ali and everyone. One step at a time is absolutely right. My daughter has autism and severe global learning delay and epilepsy, I know about on step at a time and about celebrating each and every achievement, whatever the size.
Best wishes to you, Simon for next year.
And yes, I have a dog, a basset hound called Rosie. I also have a cat called Syd.
Replies to LMcGE
Sign in or sign up to reply.
Oh yeah, the tears are flowing! I started reading & following you shortly after Simon was born and to see how far he's come and how grown he looks is so awesome! I love how you and your family celebrate and support Simon in all things.
I love this and I love the big ol smile on his face too! Priceless! Thank you, as always, for sharing your story and your family with us....
Go, Simon, Go!
Replies to nicole2112
Sign in or sign up to reply.
Ali .... here I go again with tears!!! LOL. It's like you write words I feel so strongly in my heart for my children and family, and I struggle tremendously to express it in writing. My oldest son has ADHD for several years now and just last summer he began having tics. It sucks but my God he is intelligent, in the GATE program at school, has friends he enjoys playing with at school, his teachers are patient and always call on him to help them or his fellow classmates, loves to play with his brother and sister and be around us. I hope one day my family and I get an opportunity to meet you all when you're in CA, you're amazing! :) Thank you for sharing.
p.s. I have a sweet puppy :)
Replies to ourcrazylife
Sign in or sign up to reply.
Oh Ali, it takes a village, right? I have an awesome adult daughter who has multiple disabilities, and I can relate to every word of your story. The hopes, the concerns, the fears. But it is all about celebrating their successes, as well as the special and unique joys they bring to our lives and to others. I have followed you for many years and watched Simon grow through the stories you have shared. He is a great young man and very lucky to have the love and support of so many people. Congratulations and best of luck in high school, Simon!
P.S. I have a sweet 14-year-old yellow Labrador retriever, named Molly. :)
Replies to cmhornung
Sign in or sign up to reply.
Truly awesome! Congrats to all!
Replies to mccarmichael
Sign in or sign up to reply.
I got all choked up reading this. I have been following Simon's story since you were first published in Creating Keepsakes way back when he was the most beautiful baby I have ever laid eyes on. I could not be happier or prouder if he was my own child. Go Simon go! XOXO
Replies to kre8tivekate
Sign in or sign up to reply.