I could wallpaper my house with all the disability paperwork forced upon us over the years.
Always.
Sometimes.
Never.
Never enough choices on all these countless forms. My child doesn't fit within the format. We can't capture him on the page.
Where is the box that says: Maybe.
It depends.
Depends on not just the day, but the moment in time, when all the stars align, when this child of mine finds the appropriate response, the right words...
Please.
I'm sorry.
No thank you.
Words fail to describe the between times. The ways he both can and can not communicate, move, understand, see.
No measurements exist to define the boy before me.
He will not be quantified.
When our former micro-preemie qualified for public pre-school, at age three, and the professionals led Nick and I through a gauntlet of surveys, as our firstborn sat on the floor with a therapist who tested his abilities, I remember wanting to scoop him up and run for the door.
I just wanted him to be Elias.
Not a kid in the 1st percentile for gross motor. Not labeled visually impaired. Not below average. Not a list of diagnoses.
But my blue-eyed, curly-haired, sticky-fingered boy.
I don't want to name everything he can't do. I don't want to see his skills compared to a typical child his age. I don't want to peer at my boy through a lens of deficit.
I don't want to fill out another damn survey.
Fast forward, and here I am preparing for Elias to turn eighteen next month, with a slew of paperwork before me.
Always.
Sometimes.
Never.
My thick skin from years of progress reports, IEP's and medical forms feels sliced anew.
Instead of starting school, we are transitioning to life beyond-- and the grief I felt in those early days gushes through my veins with surprising force.
We are not planning for a typical send off as our son enters adulthood, with college applications, job interviews or graduation parties.
Instead, we applied for legal guardianship, so now, for the rest of our/his lives, we will need to submit reports to the court on everything from Elias's finances to health to social activities.
I will now be accountable to a judicial system for everything I naturally do as Elias's Mom.
This means endless paperwork.
Paper that cuts at the heart of a parent.
Paper that makes me want to tear down our walls pasted with multiple wounds over the years and scream:
Please!
I'm sorry!
No thank you!
No thank you! No thank you!
NoThankYou.
My heart is holding space for you.
Elias is Elias. Elias is a complicated human being.
Just. Like. The. Rest. Of. Us.
I comprehend the whys of the bomb cyclone of paperwork in this day of so many fraudulent and greedy folks who have misused, abused, and made skeptics of the pursestring holders.
But….
It is TOO MUCH. When I began as a SPED Educator back in the dark ages, there were only four pages…then the lawyers got ahold of it all…
We need not only person-centered care. We need family centered and human focused CARE that extends to all involved in the family—individual, parents, legal guardians, sisters, brothers, grandparents, aunts, uncles, and cousins.
The paperwork avalanche of paperwork has got to be reduced to just a small, short flurry once in a while, for everybody’s heart, mind and sanity.
Posted by: Janie Evanson Henderson | 01/08/2022 at 03:17 PM
The system doesn't see individuals, only categories, scores, and data on a page. It's enraging. And submitting to the heartless machine must be done to be responsible citizens, parents, guardians. Wish it were possible to escape the cold categorization without fear of relinquishing our own individual compassionate and loving power to the steel cold system. Life continues to deliver blows that fuel madness, sadness and a survivor's leather skin. ❤️
Posted by: Greta | 01/08/2022 at 06:06 PM
Oh Jamie and Greta, thank you so much for your words. They are fuel to my tired soul. ❤️❤️🙏🙏
Posted by: Christy | 02/11/2022 at 07:10 PM