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Our New and Different Life: Four Years Later

April 14, 2017 by Emily 14 Comments

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. 

Our New and Different Life: Four Years Later
Four years ago, I sat across from a developmental pediatrician who shared with me the results of an autism diagnostic test. I knew the results before she told me, but it was still a blow that left me reeling.

“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.

Our New and Different Life: Four Years Later
I remember crying at the computer the night I wrote this post, wondering what the future would look like for my newly 2 year old Sophie. I didn’t know how I’d bear it, or how we’d get through it, or how we’d afford it. I felt so inadequate, so uninformed, so overwhelmed and lost.

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.

Our New and Different Life: Four Years Later
At six, Sophie is bright and intelligent and funny (“Mom, if I had a rat restaurant like on Ratatouille, I’d call it a RAT-staurant!”). She reads voraciously and has a playful imagination. She’s been mainstreamed into the typical kindergarten class, and she’s at the top of her grade in several subjects. She’s been student of the month in her class and recognized by the city mayor as student of the month for her entire school. She has an INCREDIBLE memory, lots of artistic and STEM talent, and loves playing with/being a second mother to her little brother.

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.

Our New and Different Life: Four Years Later
We’ve met and fallen in love with angel therapists and teachers who have given us their time and attention and support without ever making us feel like bad parents. Who didn’t ever judge us for meltdowns or setbacks. Angels who literally saved and gave us our lives by giving Sophie wings. I will forever be an advocate for Early Intervention programs, and I whole-heartedly recommend ABA (applied behavioral analysis) therapy whenever possible.

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.

Our New and Different Life: Four Years Later
We’ve let go of a lot of preconceived notions of what things “should” look like and have embraced a much broader world view of learning and behavior. I am aware of things I never would have known about–sensory processing disorders, sleep disorders, neurological challenges, the whole world of the gut biome, and our entire way of eating.

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.

Our New and Different Life: Four Years Later
I know with certainty that results from therapies are NOT an indication of a parent’s love or dedication to their child. While parental followthrough and involvement is critical to implementing any therapy or intervention, I know that the heartbreaking truth is that there are families who have worked longer, done more therapy, spent more money, and tried more interventions than we have who may never reach the level of function they hope and pray for, not for any lack of love or effort. These parents are fierce advocates of their children, and love with more strength and devotion than I ever knew possible. They are heroes.

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.

Our New and Different Life: Four Years Later
My goal wasn’t to cure Sophie. It was to give her the freedom to do and experience as much as she’s capable of, whatever that may be. I didn’t know what that would look like–whether she’d talk or not, be able to hold a pencil or not, learn at school or not, or even acknowledge her little brother’s existence. I didn’t have an end goal in mind other than for Sophie to feel as free and comfortable as she could in her own body.

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.

Our New and Different Life: Four Years Later
To say I feel blessed doesn’t begin to cover it. I am in reverent awe of the little girl I am blessed to mother. She is everything I hope to be. If I could wave a magic wand and take autism away from her, I would do it in a heartbeat. But the lessons and the magic and the miracles we’ve seen because of autism have made me and our family who we are today. Our new and different life is a different color than the one I imagined when my pregnancy test read positive all those years ago, but through the struggle and the challenges, the inchstones and the cultivated hope, it has become more beautiful than I could ever have dreamed.

Happy birthday, dear Sophie. I love you so, so, so much. Always.

Filed Under: 5 fact friday, Autism, lovely family

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Comments

  1. Mamo says

    April 14, 2017 at 5:52 am

    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!!

    Reply
  2. Tracy says

    April 14, 2017 at 8:04 pm

    This was beautifully written! Thank you for sharing!

    Reply
    • Emily says

      April 15, 2017 at 3:35 pm

      Thank you Tracy! Hope you have a wonderful weekend!

      Reply
  3. Tara says

    April 14, 2017 at 8:16 pm

    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!

    Reply
    • Emily says

      April 15, 2017 at 3:35 pm

      Thank you sweet friend. Miss you!

      Reply
  4. Monique @ ambitiouskitchen says

    April 14, 2017 at 9:19 pm

    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!

    Reply
    • Emily says

      April 15, 2017 at 3:35 pm

      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!

      Reply
  5. Melody says

    April 15, 2017 at 12:13 am

    Happy Birthday, dear Sophie. Your post warmed my heart and brought tears. “Reverent awe”…. what a beautiful description. ❤

    Reply
    • Emily says

      April 15, 2017 at 3:33 pm

      She really is the sweetest. Thank you for your birthday wishes!

      Reply
  6. Jen says

    April 17, 2017 at 3:32 am

    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!!!!

    Reply
    • Emily says

      April 17, 2017 at 12:11 pm

      Thank you Jen! She really is an amazing little girl!

      Reply
  7. Valerie Montpetit says

    June 28, 2019 at 12:56 pm

    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

    Reply
  8. Valerie Ensor says

    December 19, 2019 at 11:58 pm

    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.

    Reply
    • Emily says

      December 20, 2019 at 6:01 am

      That’s so kind of you to say. She really is a gift!

      Reply

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