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.
Wow. This really hits home. Tears . . . of joy, of course. Young man, you truly are a unique star, sent here to . . . shine. ;) {@}
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Way to go Simon!!! Seems like he was just 4 years old yesterday!
As the sister and caregiver of an autistic child, it truly is the little things and yes we celebrate them all.
Thank you Ali for advocating, educating, and inspiring in the huge world of autism. You are truly appreciated and loved! <3
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Go Simon go! I have followed your journey through your Mom's blog and have cheered you on from the other side of the world. What you have achieved is fantastic and I am so proud of you. I have two dogs, one is called Zed, he is a border collie x golden retriever, and the other is Patches and he is a little miniature fox terrier. Wishing you every success in high school. (and go Mom too).
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So awesome! Go Simon!
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What a truly beautiful story and such a remarkable child. I have loved watching Simon grow, thank you for sharing such a big part of your life Ali. Go Simon Go!
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I don't know Simon. I don't know you. But reading this post--seeing the light and bright photos and all of the smiles--I'm so proud of Simon. And so excited to witness this next chapter of all of your lives. I feel lucky that I have gotten follow Simon's story from afar all these years. And I will continue to cry happy tears and cheer from from my little corner of the internet.
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You are a wonderful mom Ali. I have tears in my eyes from reading your stories. Simon is so lucky to have you. You look great and you look happy no matter what your day-to-day struggles are. Life is full of challenges and the best thing to do is, take it one day at a time. Hugs
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Simon....you are 100% AWESOME! Congratulations!!!
Ali, I love how you celebrate your children's accomplishment, little or small. You and your families story has been an inspiration to me, both affecting my own familiy with my two boys and in my work, working with families and young children. Thank you!
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Yay for Simon and yay for you all!! I love reading about Simon and all he has done! Thanks for sharing! Your stories touch so many and hit home on many levels!
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Congratulations to Simon and to all of you. Of course I don't know any of you, but in following your story I'm so impressed with the way you have been able to all work together for the greater good. We also have a 21 year old son with autism, and I totally understand your step-by-step plan. That's how we roll here. There's no telling how things will go, but you have one lucky boy, and I know it will all be ok. Yay, Simon!
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I've read your blog since Simon was a baby! I love this post and it makes me so happy. Thanks for sharing.
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Ali this is my all time favorite ever post of yours. You are a wonderful mother and cheerleader and storyteller. Go Simon Go. Go Ali Go!!!
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GO SIMON GO!! Congratulations on a job well done Ali and family!! Your story touched my heart and I can tell that you all are so proud of Simon's accomplishments. As a (single/divorced) mother of a son with Downs syndrome, I can relate to much of what you are saying. It isn't easy, but the end results are AMAZING!
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Congratulations Simon! Great job! I love reading about how awesome you are on your mom's blog - from loving Legos and Disney to loving Star Wars and Harry Potter - you are awesome! PS we have 3 cats named Wednesday, Reid and Jane. They have nick-names - Friendy Wendy for Wednesday - she's the friendliest. Reidy Weedy for Reid, and Jealous Jane - she always tries to get petted the most! We also have a Super Service Dog named Edge - he helps my daughter. Have a great summer!
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Way to go team Edwards. Hi Simon my name is Sharon and we have no dogs, but we have a cow named Anakin.
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Love this story. We too are parents who worry about everything. I love your perspective and pray that my Cooper can flourish as Simon has. He is so lucky to have such wonderful parents, but you are so lucky to have him as your child.
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Hi Simon! My name is Rocio and I do have a dog, his name is Gitano (Gypsy in Spanish) and he is a long haired dachshund.
Go Simon Go!
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This year I got to brag about my autism spectrum boy as he graduated high school. I couldn't do it with crying Buckets. Like you, when we first got his diagnosis, we didn't know how far he would go. We went so fast as to change our will to be sure he had a caregiver for the rest of his life. I also put together an amazing team that personally cares about home and wanted to him to succeed. At one point, in seventh grade, we wondered if he has gone as far as he could go. Then into our lives steps the most wonderful Speacial Ed teacher. She agreed with that my son needed to be the best he could be. She tutored him. She made sure he got understanding teachers. She convinced the robotics teacher to let him take robotics because that was exactly where he needed to be.
But make no mistake, I supported him and put his team together, but my son did all of the work. He wanted to be like neuro typical kids. He watched tv and learned socially appropriate interactions. He used to say compete lines from movies when he would meet people. My boy did all of the hard work!! He is my hero.
Wait four years until Simon graduates high school. Your heart may burst out of your chest.
Way to go, Simon. You are my hero, too.
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This story makes me so very happy. Amy is one of the best, without a doubt - her shoes will be big ones for someone to try and step into. But onward and upward you guys go - you are amazing advocates for Simon and I know he will continue to make great strides forward! Go Simon go :)
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I just wanted to say that not only have you been my scrapbooking mentor for a long time but I have also been following your life with Simon too. My son has Asperger's Syndrome and is now 19. Last year he graduated from high school and i think it was mine and his greatest achievement. This year he is in his first year of university (college)and doing really well, getting Distinctions and High Distinctions and loving university life and all that that entrails. It took a lot of work to get him to graduating high school I often I felt like I was doing my senior year all over again but with a lot of support from fantastic teachers and family we got there. I still read your blog and your story often mirrors mine. Congratulations on a fantastic achievement for everyone. I look forward to reading the rest of this story.
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Go Simon Go! what a blog post to celebrate Simon. Congratulations Team Simon!
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Go Simon Go!!!! We do have a dog Simon, his name is Paddington. He's 58 pounds and he's a black goldendoodle! He's silly and fun and loves balls.
What a joy joy joy this was to read! I know you are and inspiration to others and a help when they feel they are in a rough spot on their own parenting! Thank you for sharing!
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Well done Simon and what an awesome "team" you have! Keep putting one foot in front of the other and you will go places!! And to answer your question, my name is Shannon, I have two sons, Liam (12) and Nathan (7), they love Star Wars & Lego too! We have a Jack Russell dog, his name is Bosco, he is 12, but still thinks he is a puppy!!!! Love your work Ali, as a memory keeper, as a business owner, and most importantly as a Mum! xxx
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Thank you for sharing!! Always so inspiring Ali!! God bless you!
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Thank you so much for sharing your life with us Ali!! I've followed you for many many years and it is so heart warming that you share your life with us. Like many others have already mentioned, you have been like my own personal mentor/life coach. My son, Vincent, is a little older than Simon and also is diagnosed with autism. I remember those early years. It was difficult. Looking back, I can honestly say I was depressed. I stopped scrapbooking. I was struggling to keep up with life. Everything was too painful for me. I had been a subscriber to CK Magazine for awhile when I stumbled upon an article you wrote. I think it was around 2004 or 2005. In that article, you were describing a layout you made about your son Simon who was recently diagnosed with autism. That was a pivotal moment for me. I thought to myself, "I can scrapbook about autism? It hurts too much. But if Ali can do it...." For some reason (that I can't really explain to well in words), it was like you opened a door for me. I checked out your blog and just starting to read. It was uplifting to read someone like you (a real true life "celebrity" in my eyes) talking about autism. And you scrapped about it! It was the gentle push I needed to pick up my scrapbook supplies again. It took me weeks to make my very first layout of my son's journey with autism. After that, there was no turning back for me. My son's journey is very similar and yet very different than Simon's. But the journey is worth celebrating every step of the way. Thank you for opening your heart to us. Thank you for sharing your words. I read your words and it just lifts me. Congratulations on Simon's graduation. I can't wait to see what the future holds for him.
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