I’m home in NYC for the next week and a half, and while Mom’s at work during the weekdays I’ve been able to chill at home with Dad. We even share the same awful fashion sense at points-
(Note- socks with sandals only happens at home. Wouldn’t be caught dead wearing socks with sandals out.)
I help when Dad needs the help- he’s stubbornly independent like me, so I don’t help unless asked.
Dad has a stoma, a hole in his neck right by his Adam’s apple, just like Shawn Wright does in this commercial, after a bout with throat cancer seven years ago. Dad uses the hole to breath, and he covers his stoma with his thumb to speak (the voice device even accommodates for tone- if it didn’t it would be impossible to speak Chinese!).
Dad insists on doing most everything. But he can’t clean the voice device inside the stoma himself.
“Annie, come help me clean this. It’s taking a lot of strength for me to speak,” he says to me in his Toisan Cantonese.
Helping him clean his stoma is kind of like picking boogers- there’s dried-up mucus and wet mucus covering the voice device, and I have to use a flashlight and tongs to get the mucus out. It’s a sensitive process- my dad winces with his eyes when he’s about to cough, and if you don’t get out of the way in time you might just get sprayed. AH!
At first I was scared- what if I hurt him? What if I poke him? What if I pull something out I’m not supposed to? I’ve helped him before, but not for over a year. I half-heartedly went in the first time and didn’t get out anything except the superficial boogers. And Dad still was having trouble.
“We’ll try again later,” he said.
As Dad’s almost at retirement age he’s had plenty of years to speak and communicate. He knows the non-verbal cues and the few words he has to say in order to get his point across. But, understandably so, he was still frustrated.
I sat for an hour, hoping the mucus would free itself so we could try again. I occupied myself trying to prepare and make handouts for a panel in NYC on Wednesday where I’ll be sharing about my experience with the Caucus of Rank-and-File Educators (CORE) and Chicago Teachers Union (CTU). I’m nervous about it. Feel like the words aren’t coming out.
Then I thought back to my students, who I will see in a little more than a month. My students have autism and all kinds of developmental and cognitive disabilities. For them, voice has always been an issue. Some hit others, scratch themselves when they don’t get what they want. Some of my kids are nonverbal. I use picture exchange communication systems (PECS), songs, lots and lots of visuals, and other methods to help them communicate what they need. And they make strides in communicating. Before we can even get them to where they should be functionally and academically, we work on their social and communication skills first.
If I can get students with autism to speak, to begin reading, I can surely speak in front of a group telling about my experiences, right? And I can surely help my Dad breathe and speak a little more easily?
Dad called me over again, asking for help. I came and decided not to be so frantic about it. It took about fifteen minutes, a lot of missteps, coughs. Slowly but surely we got everything out. It was a lot of mucus.
And ooh, did my Dad light up. He just felt so empowered, like he was fully himself again. For the next ten minutes, and after my mom got home, Dad was extolling my virtues. “Look, Annie, look at all that mucus you got out for me. And now it’s so much easier for me to speak. It was so hard before. You just needed to take your time.” Just kept repeating that over and over. He jumped up and started doing his exercises. (And now nagging a bit, but what Dad doesn’t?)
I’m still sulking somewhat- I’m worried about this panel. I don’t view myself or speak as some kind of authoritative figure often.
It’s not enough to give someone a voice- they need to learn how to use it, too, and feel confident in sharing.
But sometimes, giving someone a chance to speak is enough. Dad’s running around now, a clear sign of that lesson. Pow pow.
Thanks, MORE, for giving me a place to use my voice. I’m still anxious, but a bit more lit up now.