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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. 

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98 thoughts

  1. mtercha says…
    06/20/2016

    I can see the pure love in your eyes in these pictures. Thank you for sharing your story. He's an awesome kid. I can tell from your blog posts, and classroom content and the instagram how much he's loved. That so comes through. Michelle t

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  2. iScrap says…
    06/20/2016

    Go Simon Go! Congratulations to all on reaching this milestone. I am just a stranger who has really enjoyed - and learned a lot from - watching Simon grow up from your posts. Thank you for sharing your family's stories throughout the years. Here's wishing Simon the best high school experience he can have!

    Reply 0 Replies
  3. regan342 says…
    06/20/2016

    Go Simon go! This post made me cry with pure joy, seeing all the love that surrounds and follows him.

    Reply 0 Replies
  4. Ballfieldmom says…
    06/20/2016

    Hi Simon! My name is Barb. I have a big yellow Lab named Daisy. She is my best friend! Congratulations on completing Middle School! That is so cool! I am proud of you.... Keep being awesome!

    Reply 0 Replies
  5. SusanBowers says…
    06/20/2016

    Reading this through my tears and celebrating with you for Simon. As a grandma of a grandson with Autism this gives me such hope.

    Reply 0 Replies
  6. Anle717 says…
    06/20/2016

    Beautiful text + photos! You got this amazing talent to express your feelings & thoughts in text to the ones around you Ali! Thank you for charing & inspiring us!!

    Reply 0 Replies
  7. minkaclark says…
    06/20/2016

    Big Congrats Simon. I have a dog called Millie. She is my best friend. I hope you have a great Summer and enjoy your first year of High School.

    Reply 0 Replies
  8. Maxpuppy says…
    06/20/2016

    From one autism mum to another, thank you. Thank you for sharing so much of Simon's story. Our son is 9 and changes school in 2 years (we are in the UK) and we are just beginning the process of where he will go next.
    Please tell Simon he rocks and that we have a 10-year-old Chocolate Labrador called Max.
    PS: I wholeheartedly agree with you that scrapbooking this difficult story is its own blessing ... and cheaper than therapy, right?

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  9. scrappychick says…
    06/20/2016

    I have watched you grow from a toddler, to a boy, to a fine young man through Creating Keepsakes and this blog. You are an amazing person. Congrats on this achievement! Go, Simon, Go!

    Reply 0 Replies
  10. mmahurin says…
    06/20/2016

    Congratulations Simon! You are awesome, plain and simple. Allie - your posts about Simon are my favorite of everything you post. I don't know a single person personally who has autism or a child with autism and I have learned so much over the years from your story. Simon's leggo building expertise blows my mind completely.
    Thank you for so openly sharing his and your families stories here. Please tell Simon Congratulations and Good Luck in High School and also, we have a Havapoo (part Havanese, part Poodle) named Daisy Mae. Go Simon Go!

    Reply 0 Replies
  11. hgauvin says…
    06/20/2016

    What a wonderful post Ali! I'm all choked up...tears and all. Congratulations Simon! May high school be an exciting adventure for you.

    Reply 0 Replies
  12. Jeannew says…
    06/20/2016

    So beautiful! Go Simon!

    Reply 0 Replies
  13. retromom says…
    06/20/2016

    This was touching. Simon is blessed to have so much love from all of you. The fact that you've all been able to come together, blend, bond, and persevere through your family trials is so very admirable and classy. Thank you for giving us a peek at your life and your people. I have gleaned so much here and been so inspired by you. It has been neat watching Simon grow up through the years. I'm looking forward to hearing about Simon's high school adventures. Go Simon go!

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  14. mugsie says…
    06/20/2016

    I don't know why but I'm completely choked up and feel like Simon is part of the family, from "knowing" you for so long through this online space and magazines. I'm so proud of you Simon, you are one lucky young man to have all these awesome people cheering you on! You've done a great job Simon's people :-) I don't have a dog Simon, but we did have the coolest cat, his name was Sam. He was my little girls' pride and joy and we hope to one day soon get a dog. I can't wait for you to get your dog Simon! Xo Meg

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  15. gina200 says…
    06/20/2016

    What a beautiful post. Congratulations to all of you!! I work in a school and see what an amazing job some educators do and how they are able to connect with kids. So happy for you all that you were able to find someone like that and hopefully again in high school. I'm sure your supportive family and friends make such a difference in how successful Simon has been.

    I love reading your words Ali. Thank you so much for sharing with us and again inspiring us to tell our stories.

    Reply 0 Replies
  16. kathleen says…
    06/20/2016

    GO Simon, GO!
    LOVE this! LOVE your words! LOVE that you are so willing to share with us all! Thank you!!

    Reply 0 Replies
  17. KellyMinMN says…
    06/20/2016

    Go Simon Go! Wishing you the best in high school in the fall, I have 3 boys, Jon is in the middle and a freshman in the fall too. Our golden retriever's name is Indiana Jones, we call him Indy.

    Reply 0 Replies
  18. angymuse says…
    06/20/2016

    "Hi. My name is Simon. Do you have a dog?" is what made me burst into tears! congratulations Chris and Ali. Amazing job! so wonderful. GO SIMON GO!

    Reply 0 Replies
  19. CasieGutierrez says…
    06/20/2016

    Ali,
    I love how memory keeping has allowed you to celebrate Simon! By looking in from photos and adding words, you create magic that is a gift to all of us as you navigate life's tricky waters of being a parent to a special need son.
    I love celebrating Simon's successes from my side of the computer and thank you for sharing a true mom voice with us mamas in the thick of it!
    Cheers Simon!

    Casie

    p.s. and Simon, if you meet me next month I WILL have a dog - a sweet little puppy!

    Reply 0 Replies
  20. abbypimentel says…
    06/20/2016

    As you said in the Read Story content, "Words are Powerful" - you've moved so many people with your words AND photos, and heartfelt stories. Thanks so much for sharing, Ali. You're going to do great things, Simon! My name is Abby, and I have a German Shepherd named Bear, a Havanese Terrier named Tobie, a Beagle named Tango, and another Beagle (Tango's brother) named Magnum. All of our dogs are boys. We also have 3 big red-eared slider turtles and a gazillion frogs in our backyard pond!

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  21. carriecolbert says…
    06/20/2016

    Love you all so much.

    Reply 0 Replies
  22. murrjani says…
    06/20/2016

    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..

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  23. peggy1958sue says…
    06/20/2016

    CONGRATS SIMON!!!!! Have a great summer and a BLAST in high school!!

    Reply 0 Replies
  24. papergoddess says…
    06/20/2016

    Love the moments captured here... hard to read without getting teary-eyed! Can't wait to see what you create with this story.

    Reply 0 Replies
  25. jstock17 says…
    06/20/2016

    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!

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