Our New and Different Life: Four Years Later

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. 

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.

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.

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.

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.

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.

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.

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.

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.