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.