Not easy to read, but worth the effort
[I am honored to provide a platform for Corbett’s latest guest post. – ed.]
“Her life was not worth living.”
“He was such a burden to his family.”
“The parents suffered so much.”
“There’s no crime here – they did a merciful thing.”
This is how the media often reports on the murders of disabled people. The reports are full of sympathy for the murderers and short on compassion for those murdered. Disabled people’s lives are framed as useless, tragic, suffering. Media writers ignore the joys and passions of the victims – maybe because that disrupts the sympathy narrative for the murderer.
Since 2012 on March 1st an international Day of Mourning vigil is held to honor and remember those disabled people killed by family and caregivers. Some vigils also include those murdered by authority figures, such as police and school personnel. This year there are…
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The day after my last post, I brought my pair of woodshop headphones with me when I went over to babysit Rhythm. And when he started to fall apart, I said “I’d like to try something for you” and put them on him.
He loved them. He wore them for the majority of the afternoon. He discovered and taught me something new, which is that if you wear them while spinning (say, on a rope swing), you don’t get dizzy as quickly.
The following day, Rhythm was watching TV when I arrived, and we did that for a while. Then, he ran over to a shelf full of books and toys and began rummaging around– something I haven’t seen him do before. Eventually, he held up a pair of headphones, the kind you use for listening to music!
“You want to borrow my headphones again?” I asked. He nodded. He wore them for most of that afternoon as well, removing them only for brief conversations with me and to listen to specific sounds he enjoys.
He still had some stressful moments, but far less. I’ve suggested to his parents that they buy him a pair of his own.
One of the hardest things for me to get used to when working with Rhythm is that he doesn’t like me to talk much. He gets overwhelmed by either processing language or the sound of human voices (especially female/higher pitched voices, it seems), or both. I don’t know the specifics, just that he often gets distraught if I talk to other people too much in his hearing, and even more so if we’re talking about him, even in casual, positive ways.
It is both understandable and odd that I have trouble with this concept.
I am, on the whole, an exceedingly verbal person. I spoke early, often, and at great length– and I still do. I enjoy describing and explaining things, narrating events, and helping people understand complex concepts. While I’m not averse to a comfortable silence, I enjoy talking quite a lot as well.
I also rely heavily on speech for many of the ways in which I show respect to the children I work with, especially nonverbal children. Things I do verbally include:
– Telling them when I am about to do something with or to them, like removing a piece of clothing, so that they can be prepared and have a chance to object.
– Asking them to express consent or preference. (Eg. “Would you like to go outside?” “May I put a jacket on you?” etc.)
– Voicing things they have communicated to me nonverbally, for confirmation or clarification. (Eg. Child signs =music= and I say “You want me to put on some music?” Child points to the fridge and I say “Are you hungry? Would you like something to eat?” — I often phrase things multiple ways, to reduce the chance of misunderstanding or them getting stuck on an unfamiliar word.)
I especially tend to try and problem-solve verbally, making it an interactive process. But today, I had something of an epiphany.
[a side note– Rhythm recently discontinued a seizure medication that was a heavy sedative. Since then, his parents have noted increased attention, alertness, energy, and motor control, but also a higher level of sensory sensitivity and more frequent frustration as he adjusts.]
When upset/approaching meltdown, he frequently signs =stop= and =scratch=, then scratches/claws anyone within reach. This can escalate to hair-pulling and biting, by which point he is usually in tears. It’s obvious that he’s in a great deal of distress, but it’s hard for us to tell what is triggering the distress sometimes.
Today, we had just gotten home from a walk, and he was starting to act worn out– not at meltdown yet, but at the “flop” stage– he plonked himself on the floor and starting signing =stop= over and over. I sat down with him and tried to work through it verbally, asking if something was wrong, if he could tell me what he needed, if he was hungry, in pain, needed to go to the bathroom, wanted a bath. I was asking these things calmly and slowly, trying to zero in on something I could do to make him less miserable… I hate seeing him so unhappy, and I was so at a loss for how to help him feel better.
He grabbed my wrists and scratched them, nearly crying. Then he took my hands and placed them over his ears. Something clicked in my brain, and I shut up. I finally understood that not only was he past the point of being able to answer my questions, but the very act of my asking was hurting him further.
So we sat there together in silence. After a moment, he made one of “our” faces at me, initiating a game we often play of making funny faces at each other. I responded in kind, and we made faces until he relaxed and smiled, at which point I tentatively asked again if there was something I could do for him. He asked for a drink of water. I nodded, and held out my hand to help him up.
When we went to the kitchen, his grandmother was cooking dinner, and began chattering at him cheerfully about what she was making. He fell apart again, dropped to the floor, and dug his fingernails into her leg. She suggested a bath, he agreed, and I hustled him away to the bathroom to get ready for the bath with minimal talking.
I’m honestly ashamed that it took me so long to figure this out– for a very simple reason. As I sit here writing this, I’m wearing ear-protection headphones, the kind you use around power tools. Because I had gotten to the point, as I occasionally do after a stressful or busy day, where I was afraid I would scream and cry if anyone else spoke to me– or even around me.
All sounds have the potential to drain my energy, but listening to speech that my brain has to process can be especially stressful, even for such a language-oriented person as myself. When I have limited processing power left, I can’t afford to spend it all on parsing information that other people are throwing at me. I was so exhausted by hearing their words that I could no longer hear myself think. All I wanted was for everyone to shut up and let me feel like myself for a little while.
Maybe that’s how Rhythm feels sometimes, too.