489 Extracted Words – The Tease – April 2016

 

April 2016

OLYMPUS DIGITAL CAMERAI write flash fiction, non-fiction, essays and novels. This month’s Tease is from a novel in progress. April is National ASD (Autism Spectrum Disorder) Month. To highlight this, I have chosen a piece involving a character with ASD (which was also presented in an earlier Tease, with some additions).

She had to reach up to brush his hair. She wasn’t short by any measure, but he had sprouted to nearly six feet over the summer. Where had her little boy gone? The child she knew had fled, slipped out in the night while she was trying to glue together a life for him. In his place, a stranger had arrived, a lanky, teenage man-boy, with wavy brown hair and tragic blue eyes. Buried inside him was a well-disguised sense of humor, the kind that laughed at curse words (even ones she was certain she’d never exposed him to) uttered in public, often laughing even louder when she reacted to his reaction. The little boy her mind still pictured didn’t know a thing about cussing. Of course, that child also didn’t kick holes in walls, self-mutilate or engage in the worst offense of all, looking just like his father. Every day, he acquired more of his dad’s stoic good looks. Unfortunately, he also shared his father’s pension for escape and his frigorific ability to plunge an emotional pick axe into her heart. The only difference, and it made all the difference in the world, was that Austin didn’t know he was doing it. The other bastard did, and could rot in hell for it.

“What’s it going to be today, Mr. Man? Shower? Bath?” She preferred that he shower, but Austin liked baths. As long as he did one or the other daily, and included a shower thrice a week, she didn’t push too hard. It was a fine line with Austin. The harder she pushed, the harder he pushed back. But he needed guidance and that escalated the tension, creating tough choices. In her parent group, Trish spoke about choosing useful battles, if able. But so often, the battles chose them.

An acquaintance gifted her a parenting book once, when Austin was about six, written by a Hollywood couple with zero child rearing credentials, other than their fame. It only took three pages for the authors to state unapologetically that most kids on the spectrum were misdiagnosed, even suggesting that some parents sought an ASD diagnosis for their personal benefit. She had immediately tossed the book in the trash, along with a spoiled head of lettuce, Austin’s wet bed pads and the scum that she scraped out of the dishwasher tray. The golden couple had their beautiful images plastered all over the cover so she gave them an extra shove into the garbage, face first. There was no incentive for obtaining a fabricated diagnosis. Autism was no bucket of fame. If anything, spectrum disorders manifested in secret, the secrets of parents, siblings and the autistic children themselves. Who could cypher the mysteries inside a child such as Austin?

Her son grunted his choice. Bath. She turned the water on. Hot. He liked it hot, even in August, just as she liked her coffee.

 

 

Autism and the Healthcare Profession – Some get it and some don’t.

A holiday experience reminds us that when it comes to helping individuals on the spectrum, some health professionals get it and some don’t.

On December 30th, my son suffered the first seizure of his life. Three hours later, he suffered his second. After two days and a battery of tests at Sacred Heart Hospital, it was determined that his seizures could probably be handled by proper levels of medication without any lasting trauma. (Very good news, considering the litany of scenarios that ran through my mind when I first saw the street in front of his house jammed with aid vehicles and EMT’s). But that horrifying, hectic, fatiguing 48 hours reminded me and my wife once again of something we learned early on in our nearly two decade journey with our son through the world of ASD – when it comes to caring for individuals with autism, it’s clear who gets it and who doesn’t.

The following is a chronological step-by-step listing of individuals (caretakers, first responders, nurses, doctors and techs) and how they handled their encounters with my son on December 30th and 31st. Each is followed by their grade [get it/don’t get it]. If it helps, think of this as pass/epic fail.

His staff during both seizures – calm, effective, empathetic – get it.

EMT’s in home – overwhelming, far too concerned with procedure – don’t get it.

EMT’s in transport – Caring, helpful, able to adapt to my son’s needs – get it.

Emergency Room, adult side – Doctors and nurses, confident, competent, helpful. – get it.

Emergency Room, pediatric side – not helpful, annoyed (many sighs, frowns and rolls of eyes), couldn’t stop staring, blamed the system for delays and setbacks, worst experience of the entire two days – don’t get it.

Eighth floor nurses – helpful, underestimated his behaviors but quickly learned to value our assessments – get it.

In-hospital transport – careful, fun, attendant – get it.

MRI nurses – helpful, listened to our advice on his behaviors when waking up from sedation – get it.

Dr.Hasan – quick, direct, caring – gets it.

Hospital Doctor doing rounds attempted to interrupt EEG procedure (even after being asked by one of the techs to wait a moment), reacted childishly to being told her paperwork would have to wait. – doesn’t get it.

My son’s doctor – got him admitted quickly during a code red – always gets it.

I really didn’t want to start my new blogging year with a negative post, but hopefully, those who don’t get it will learn from my words or, at the least, re-visit the reasons why they joined their profession in the first place. And for those of you who do get it, words can not express our gratitude. Thank you.