Day Without My Voice
Drawing inspiration from both Aidan, my non-verbal 12 year old, and Mary, another mom of a daughter who is non-verbal, I decided to spend one day without my voice. I learned so much a few years ago when I spent the afternoon in Aidan’s power chair.
Unlike Mary, I didn’t have much of a plan nor was I really familiar with a particular speech app on Aidan’s ipad. The one we originally purchased for him was not particularly appropriate for him. It was too difficult to find words and not easy to program. I have so much more to say about his ipad use that I will save for another post.
For me and my day without speaking, I mostly used gestures, the notebook on the iPad, and the few buttons on Aidan’s speech app to say thank-you and good-bye.
My day started with me speaking into Aidan’s ear what I would be doing that day. Ironic, I know, but it’s only fair. We were alone getting ready for the bus and it’s usually very quiet between us in the morning anyway. Construction project not withstanding, I cannot remember a time when my doorbell rang at 7:30 am. This morning it did. I didn’t expect my hardest challenge to come at the beginning of the day, before coffee. I quickly typed a message on the iPad, “I’m not using my voice today because my son hasn’t been able to speak for 12 years. It’s isolating and frustrating and I appreciate your patience.”
I answered the door and basically smiled and shoved the ipad in this guy’s face. He was delivering pellets for our pellet stove. He needed to know where to put them. I opened up the garage and pointed. He said the pallet wouldn’t fit in the door. I found myself trying to whisper, which might mean I have a huge propensity for cheating or that I’m not very resourceful or just hugely impatient myself. I took a moment to type that he could leave them outside the garage door and I would deal with it later. He was patient with that interaction but walked away to get the pellets before I could find my thank-you and good-bye button.
First lesson… using AAC (Augmentative and Alternative Communication) takes time. Have you noticed that most people are in a rush?
I went to the gym and then off to Starbucks to write. Lesson 1.A if you didn’t already know….at Starbucks you pay for the love. Right? The coffee shouldn’t really cost 18 bazillion dollars but the Baristas rock. So I may be somewhat of a regular there. The Barista recognized me and said hello. I smiled and showed her my pre-typed order. Pumpkin Spice latte because it’s October, duh. She asked if I had a sore throat. I shook my head and went to find my first pre-typed note about why I was doing this. She waited. She didn’t rush off to do anything else. She just stood there. Then I got my order and she waited again while I scrambled to find the thank-you button. Worth every penny I’ve ever spent there.
Second lesson… building relationships and being known make a huge difference in how we communicate with people.
Then I went home to my broken husband. He threw his back out and was home watching movies. Now my husband and I have a great relationship, but we’ve changed a lot over the years and he does still drive me bonkers, especially when it comes to communicating. In the beginning of our relationship I had to ask a million questions just to get some very basic information out of him. He hated sharing because he felt like he was being interrogated. It was a no-win situation. Over the years, I’ve learned that if I take some deep breaths and just wait, he will share. So, me being non-verbal? My husband spoke and shared all by himself!!! It was pretty awesome. I guess there’s something to say about leaving room for other people.
Then I went to pick up Liam from school. I couldn’t use the ipad because I was driving so I tried to sign to him. I took ASL in college and still have a few words to work with. However, it’s absurd to use ASL with someone who isn’t familiar with it. It was like a big game of charades and Liam and I basically laughed the entire way home. Even a challenge like this one could use a shot of good humor.
Third lesson….it’s helpful to be aware of the different ways we actually communicate.
Last task for the day was to go to chorus practice. Yes, chorus practice without singing. So I pulled out my iPad with my prepared statement to share with my friend and my iPad went on the fritz. You’ve got to be kidding me. I panicked…. because that is generally helpful. Then I started hitting my ipad because I was sure that was a thing. Turns out if your ipad goes green and you hit it hard in all 4 corners it will right itself. True story.
Fourth lesson…sometimes technology sucks and when it’s your only way to communicate you’re screwed.
As it would happen, the friend that I sit with at chorus is a speech therapist so she took plenty of time to talk with me. She told the friends around me what I was doing so I wouldn’t feel awkward and she included me in conversation. (See lesson one and lesson two). My friend did make a very good point; she asked if I was tired. I wasn’t because remember I had mostly been writing and watching movies with Garreth all day. But I do get how frustrating it can be to use AAC and I’m sure it’s draining to try to be part of conversations that are moving along without you.
Fifth lesson….yes, communication is about so much more than words, but sometimes words are everything.
I’m well aware that my day without using my voice in no way mimics a day of being Aidan. He has serious motor planning issues that prevent him from having the kind of success I want for him on the ipad and cognitive processing delays that just make everything harder. That being said, it was still a valuable learning experience for me and I highly encourage you to check out what Mary learned over an entire week of being voiceless.