November 3, 2017 by whirlyjoy
This past summer we experienced one of those incidents with Aida’s supported living situation that I live in fear of at most times – fear kept tamped down to levels that don’t interfere with my everyday life, but still always calling out “present” when I check to see if it’s maybe taken some time off for a bit.
I had her out on her favorite Sunday lunch outing – Five Guys for a “cheese grilled sandwich french fries” as she invariably types into her iPad TouchChat app. We were on our own that day, Aida was in one of her best moods, wide grins and lots of interactive communication about her new swim lessons on Thursdays and tomorrow’s outing with Posh Nana & Opa. While we were sitting and waiting for our order, a young woman came out from behind the grill – I recalled her from the cash register at previous visits, and she obviously recognized the far more memorable us. We’d never spoken before, though, and she started by asking if I was “her mom,” pointing to Aida. “She was here last week,” the young woman told me, “with another girl who was, you know, disabled like her, and two older women with them.” She added descriptions that were clearly of Aida’s housemate and some staff members. “I wasn’t happy with how the girls were being treated,” she then said, and paused, uncomfortable I think with saying more than I might want to hear. “Could you tell me more?” I asked, through the haze already rising up in my brain, hot and choking.
Pushing, shoving, impatience, food gone uneaten and taken away from the girls. “And you know how sometimes she” – pointing to Aida – “kind of shrieks and flips her head back and forth really fast?” she asked. In fact Aida had started doing it now, in happy anticipation of our meal. “Well, one of the staff people hit her up the side of the head when she did that.”
Always, always, my first focus in any situation is on Aida and what she needs in that moment. Even though what I needed was to Get. My. Hands. On. Those. Bitches, Aida needed to unwrap her soggy white bread grilled cheese sandwich and gleefully peel away the crusts to eat first. She needed to carefully fill a cup with as many french fries from our shared order that she could, and place it out of my reach for her later attention. And yes, she needed to whip her head back and forth, flap her hands and let out a few shrieks as the meal progressed, just to express her excitement.
By the time Aida’s needs had been met, I’d honed my response down to the phone calls I needed to make right then, to figure out the next 24 hours and how to keep my daughter safe. This process was complicated by the chronic management upheaval at her home – there was currently no house manager in place, and the new “program director” (who oversees two or three houses run by the same agency) was literally starting in this position the next day, Monday. I had only met her and been given her phone number the week before.
The bare bones story of the weeks that followed include these scenes: Aida “sleeping” (ha!) at my home Sunday night – not the one she’d known but the new place we’d moved into just the week prior, the two of us on mattresses on the living room floor, surrounded by boxes yet to be unpacked. Me waiting at the police station to file a report on Monday morning, and explaining to the officer in reply to his question that no, there was no possible scenario where physical restraint or coercion would be appropriate in caring for Aida, even if she is developmentally disabled. Aida able to return home when the staff in question were finally suspended. The phone call where I learned that the hoped-for video confirmed the group’s presence at the Five Guys on that date, but that the camera turned to their table was broken and there was no footage to “prove” what had happened.
What we ended with was two people’s word (two staff at the restaurant) against two others – the house staff who insisted that the whole story was a lie. Unless Aida or her housemate could describe themselves what had happened that day, the case was closed.
The supported living agency had conducted its own “investigation” and we met with them to hear their findings. “Aida didn’t want to eat her hamburger,” began the bigwig regional supervisor whom I’d never met before but who emerges in full defensive mode to run these conversations.
(“Why did they get her a hamburger??” was Mimi’s first question when I caught her up on what I’d learned, later that day. “Exactly,” I said.)
“Why did they get her a hamburger?” I asked Bigwig. “Aida would never order a hamburger at Five Guys.” Bigwig said there had been “miscommunication” and “misunderstanding” but “everyone meant well” and “there was no wrongdoing.”
I called bullshit, in so many words.
Here’s what I know. I know that if staff ordered a hamburger for Aida, it means they hadn’t asked her what she wanted or given her the chance to say for herself what her choice would be. If ANY opportunity had been offered her, she would have typed “cheese grilled sandwich french fries” which is clear communication to anyone with even basic English, difficult I believe to misunderstand.
I also know that she would have been agitated and unhappy about this. Not only does she not even LIKE hamburgers – but also, she has autism. People with autism often don’t like changes to their routines. Not having a grilled cheese sandwich is a big deal change to the Five Guys routine. Aida was entitled to be pissed about all this, and to show it.
I don’t know – strictly speaking – whether staff pushed her around and hit her up the side of the head. But I don’t need to know that to know that Aida was abused that day.
And I don’t know when our society will learn to understand this – that people who have more difficulty communicating their needs have the same rights as anyone to having those needs heard and understood and met.
Bigwig certainly doesn’t see things this way. She has stuck fast to her “misunderstanding” story and added for good measure, “staff in our homes across the state face accusations on a weekly basis, that are almost always unfounded.” Her definition of “unfounded” clearly doesn’t match mine – nor very likely that of the clients or families who bring the other accusations she brushes off so dismissively.
For Aida, having a hamburger handed to her at Five Guys that day was just a different version of a slap up the side of her head.