Our New and Different Life: Four Years Later – We celebrate Sophie’s SIXTH birthday this weekend, and I can’t help but reflect on where we were and where we are.

“She tested severe in every category.”
“At this point, she’d probably be described as low functioning”
“I can’t say whether or not she’ll ever speak.”
“There are a lot of good programs in the schools these days.”
“I can give you a list of resources and books that might be helpful”
“Do you have any family close by?”
“Her function could improve over time, but we just can’t say at this stage.”
“I recommend an aggressive regimen of therapies as well as an immediate diet change.”
It all sounded so foreign and foggy and final. I waded through the murky waters of being one of the first people my age I knew who had a child with autism, let alone a daughter with autism. I was moving to a new city and knew no one. My husband was launching into a full-time master’s program and would be gone most of the next two years. I had a brand new baby and was still recovering from giving birth.
It was a crushing blow that filled me with worry, fear, guilt, and sadness. And it was also an unspeakable relief to finally be seen and heard by someone. I’d known something was going on basically since birth. And I’d been dismissed by doctor after doctor, professional after professional. Now–finally–we could get help.

So much of what I felt in that original post still flutters across my mind at times (I still CANNOT think about junior high), but four years later, I can tell you that things are so much different than they were after that diagnosis. We are ALL better and brighter because of that diagnosis.

She’s spent thousands of hours in different therapies that helped us with everything from speech, to being able to play with toys correctly, to interacting with her brother, to bath time struggles, to wearing new clothes, to eye contact, to being able to eat new foods without getting sick.

We’ve met an incredible community of special needs parents and families through school, who each have their own individual challenges, but the quiet shared strength of knowing and loving someone who doesn’t fit the mold and a willingness to put judgement aside in favor of love.

I also know more than ever that the phrase “if you know one child with autism, you know one child with autism” is as true as true can be. What works for our family is the completely WRONG choice for other families. And what works for someone else might be disastrous for us.
We know that autism presents in much more than “high functioning” and” low functioning,” and is, instead, an intricate prism of different learning and processing styles, social interaction, sensory issues, interests and academic abilities, strengths, and weaknesses. To simplify an entire child to “high” or “low” functioning is disregarding SO much of what makes them who they are–their interests, hobbies, strengths, weaknesses, favorites, intelligence, friends, etc.

Sophie is doing incredibly well. Are we “cured?” No, and that’s never been my goal. I’ve never felt like Sophie needed to be “fixed.” She (and we) have needed help unlocking the ways she learns and thrives, support with coping skills and regulating some significant challenges inherent in a body like hers.

We still struggle with challenges related to autism daily, most of which I choose not to share. But our lives have been filled with miracles. She is thriving in so many ways I could never have imagined.

Happy birthday, dear Sophie. I love you so, so, so much. Always.
Thank You. That was so beautifully well said. We love this Brave, Strong, Girl! We love what a hard worker she is. And how she has an endless story to tell. We love her sparkle, as much as we love and admire her courage!
She is a very bright light to the world!!
This was beautifully written! Thank you for sharing!
Thank you Tracy! Hope you have a wonderful weekend!
My heart just swells for you, Sophie, and your whole family! Sending so many squishy hugs your way until the next time i can give you a real one. Love you!
Thank you sweet friend. Miss you!
I really loved this update. I remember reading about Sophie when she was first diagnosed.
She looks so radiant and happy in the photos above; you obviously have done a wonderful job teaching and showing her how to thrive in the world regardless of what anyone else said along the way. I’m sure she will continue to glow and learn in ways many of us cannot.
Thank you for sharing!
Thank you so much Monique! You’re so sweet to comment and say that. I’ve been so grateful to be surrounded by people in real life and online who inspire me to do better myself and to do my best to raise a bright, strong girl. Thank YOU for being one of those people for me! I’ve been cheering for you and your businesses all along the way!
Happy Birthday, dear Sophie. Your post warmed my heart and brought tears. “Reverent awe”…. what a beautiful description. ❤
She really is the sweetest. Thank you for your birthday wishes!
This is beautiful. I love reading about your journey! I wish you lived near me and I could have the privilege of being on Sophie’s team. What an incredible girl, and you are such a warrior mom. She’s lucky to have you. Happy birthday to Sophie!!!!
Thank you Jen! She really is an amazing little girl!
Hi Emily,
I randomly came across this post and I had chills tingling all over. I grew up with an autistic sister who is 32 years old today so I can totally relate. Seeing my mom still to this day be implicated in Sara’s life.
I admire your courage!!!!
Valérie
Just seeing this post today, warms my heart and I want to thank you for sharing it! I am grateful for all the Sophie’s in the world, they help us grow.
That’s so kind of you to say. She really is a gift!