Seeing it on paper has been one of the more difficult parts of this autism journey.
The first developmental pediatrician we took our son to gave us an “Active Problem List” that was a mile long:
Global Developmental Delay
Mixed Expressive/Receptive Language Disorder
Childhood Apraxia of Speech
Impaired Social Interaction
Toilet Training Resistance
Sensory Processing Difficulty
He was three years old. I didn’t know where to start but I knew we could work on all of it.
Autism Spectrum Disorder
The first time I saw his autism diagnosis on a piece of paper, I sobbed uncontrollably while sitting at a conference table, mostly full of strangers. You hear about mother’s intuition and “gut feelings” and people will ask you if you saw this coming. None of that made a difference.
That experience is something I have struggled to put into words for years. Fear, sadness, grief… these don’t even come close to encompassing it. Truthfully, I don’t even want to put it into words.
This was only the beginning. Over the years, evaluators, doctors, therapists, while all well-intentioned, are constantly rating, judging, and assessing my child. Some things feel wrong, “they don’t know him” we think to ourselves. Some sting, they cut my breath short or keep me up at night. The end-product never feeling like a summation of my boy.
On a few occasions now, I have had to fill out a 30+ page questionnaire covering everything from “Can he use a spoon without spilling?” to “Does he want to kill himself?”
These words get tucked away in file cabinets everywhere: school, the county, therapy, a few pediatrician’s offices. But the weight of them never leaves us.
We continue to carry them.
How do you ever get used to these words? For their sting to become dull?
Medical Incident Reports
For special needs parents, the line between acceptance and determination is a blurry one. We maintain an ironclad grip on these heavy words, these “problem lists”, until we decide in which category they are going to land.
Over time, we loosen our grip and let some words go.
Sometimes, when we let go, we make room for something better to come along. Adaptive sports, music therapy, and amazing interventionists who help your child practice sitting in a restaurant and safety in the community.
The heaviest ones, we continue to carry those. We make it our mission to send those words into the fire one day, for them to cease to exist in our children’s lives.
We, along with our children, will continue to carry the weight.