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.
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!
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Congrats Ali. And what an amazing story. yeah for you all.
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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!!!
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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!
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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!
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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.
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Ali, I echo all the lovely statements above. You truly are an inspiration to us all. Congratulations to Simon on his graduation and to you and your support team. I have long admired your parenting skills and your ability to express yourself so eloquently. I am inspired by you.
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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!
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Go, Simon, go. #fellowASDmama
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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.
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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!
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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 :)
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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. :)
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Truly awesome! Congrats to all!
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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
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Makes me smile from ear to ear . . . congrats to the Edwards family and ALL your extended family and friends. My daughter doesn't have autism but has an IEP and just finished 8th grade as well. We learn something new each day as we navigate school, sports, and social activities, but like the old Disney movie, we call it "The Incredible Journey" (one I would not miss out on for the world!).
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Of course I feel like everyone else who has followed your story does. Even through all of life's ups and downs and all your personal struggles, you make us all want to be you! I wanted to mention what else I see in these amazing pics. I see Chris leaning in taking the exact same shot as you from the opposite angle. I see the administrator hugging Simon like he is his own child. I see Miss Amy embracing Simon and smiling through her entire face. I see your whole family's pride, but most of all I see Simon's pride. What a beautiful story!
(And Simon, I have two cats if that counts. Farrah and Beanie...)
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I remember meeting Simon with Chris many years ago. Chris was campaigning for his first public office and had come to the Eugene Scottish Festival to see the folks. And yes, Simon, I had my dog Pal with me for the dog parade at the event. So good to see you all thriving and being a team. Go, Simon, go!
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Go Simon Go!
Ali, I have followed you for so long, and even had the pleasure of meeting you at CHA, and you are an awesome Mom! It is hard in this society to do what you do, to take one day at a time and to celebrate Simon for exactly who he is, so Go Ali Go!
Hi Simon, my name is Houston and I have two dogs! I have Weimaraners; they are big, grey, and super snuggly. My male is named Sterling Silver and he is HUGE but he always wants to sit on my lap! My female is named Sapphire Rose and around our house we call her Cozy Rosie because she likes to be tucked in under a blanket at bedtime. Congratulations on graduating from Middle School! I hope you have a really fun summer!
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I'm sitting here in tears. I can't help but think… I don't know, if more kids had parents like you the world would be a kinder place all around. I love you so much and am always cheering for Team Simon.
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Congratulations Simon! You and your family are an inspiration to all families. We have 2 black labs named Wrigley and Molly who look very much like your Lilly. Have a wonderful summer and good luck in high school!!
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Congratulations, Simon! This is a wonderful event to celebrate! Best of luck in high school.
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Such an awesome blog post Ali. You are such a fantastic mum. Simon is so lucky to have you! Good luck for his new adventure into High School!
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big ole lump in my throat...I love this post so much. You guys are poster parents for how families need to circle the wagons to love and care for our kids. You should be extremely proud of yourself, as well as Simon. Best of luck Simon as you move to your next chapter and beyond
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Go, Simon, Go! I just got two new puppies and they are wonderful! They are labradoodles. Their mom is a beautiful yellow Labrador and their dad is a handsome red poodle. They are an auburn color and look like they will be around 60-70 pounds when they are grown. Their names are Brody (an Irish name meaning waterway since he loves to play in the water) and Chase (a Welsh word meaning Knight since he seems like he is going to be a good therapy dog hence a knight in shining armor). I'll have to post a picture for you soon! Congratulations on graduating from middle school! Keep up the good work! Bradelynn
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