This Harsh Reality of Autism
There are some days that make me wonder where it comes from and how it happens?
Unapologetically and with no regard for feelings, I go down the resent filled rabbit hole, where I loathe everyone and everything.
Because there are some days that turn into weeks where a regression shows up, disrupts and takes up space in my child’s brain; refusing to vacate and suffocating her sense of peace.
When her Autism shows no mercy and has left my daughter crying for two weeks … straight.
She has cried at school, at home, and in the community.
The incessant crying has been stressful on every person in my home.
Also hard has been holding and caressing her little hands, that have turned red and raw from a new self-calming behavior, biting and chewing her hands.
I can’t say I’m surprised this regression is here. Gia held it together while I was away [from her], having surgery. In all the ways I had imagined our first night away from one another, this was not what I had expected nor hoped for.
She remained calm as she adapted and accepted restraint in the ways she shows me affection, once I returned home. No longer able to give me hard squeezes and sometimes painful hugs.
When she experienced a horrific flu, she held it together.
And then she didn't.
Like a volcano that stays quiet until the pressure becomes too great and can no longer be contained. It erupts. And so did she, cognitively and emotionally.
When she’s suffering, so am I. And I get mad for her. I’m mad that life has to be so damn hard for her.
And not just for my child but for the loved ones of families like ours, that live in this harsh reality of Autism.
It’s not fair.
Every morning I wake up and pray this is the day when we start the downhill trajectory, where Gia’s sympathetic system can finally calm. When she’s not in a constant state of fight, flight, or freeze.
You see, our daily life every day is challenging. Add a bout of emotional colic on top and it’s a white knuckle scenario where the only relief found is during (disrupted) sleep.
It's become popular to glorify Autism as a string of deeply meaningful Hallmark moments.
But where is that sentimental song and gold crown messaging when there’s two teenage girls at the check out, exchanging looks and snickering at my child, as she cries, acts and speaks in confusing ways?
Where is the Instagram reel acknowledging siblings and their experience as they stand by, as their beloved brother or sister has an anxiety attack in a store. A store in their small community where they know many of the folks walking in and out.
This is recognizing the Autism that isn’t hip and trendy. It's the Autistic neurotype that isn’t speculated and remedied with a fidget because it is very obvious, clear, and disabling. Where caregivers live moment to moment, with lots of deep breathes and co-regulating.
Where our children experience their Autism profoundly. And so do we.
And we’re pissed. Not at our babies.
But at the hard.
Because it just isn’t fair.
-Frankly Christina 💋
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