“My job is to pave the way, not to carry her conversations.
“My job is to pave the way, not to carry her conversations.
In years past, I have chosen to go voiceless but today after a dental appointment, I was in need. The right side of my face was numb, the corner of my mouth was drooping, and I could barely drink from a straw without dribbling. The last thing I wanted to do was talk, however, I had errands to run before my next appointment and I needed my voice. Fortunately, I have SFY on my phone for modeling language. In fact, I never leave home without it and I was good to go.
My first stop was for gas. I used the Hold That Thought feature to preprogram the phrase, “fill up with regular please”. Of course, I could tap out those words, however, being mindful of the line behind me, I chose the quickest way to make my request. When the attendant handed me the receipt, he smiled when I tapped, “thank you”. What impressed me the most was he was unfazed as if he sees someone using AAC every day. The reality is, it’s rather rare. If I’m lucky, I see one, maybe two people a year out in the community using devices.
The next stop was Trader Joe’s. The checker asked if I found everything and I tapped yes, and then said, “thank you for bagging”. I showed him my phone while it spoke and that helped him quickly connect the dots that this was my voice. He winked.
Nearer home, I stopped at my favorite coffee spot. I’m a regular and often chat with the cashier. After I tapped thank you, she tilted her head in question. I then tapped, “I am not able to talk”, then added, “dentist” which was all the explanation I needed. Next time I see her, I’ll tell her what AAC is about and why it is important to our family but now I was running late and had to scoot. It was a little frustrating to “talk and run” and didn’t complete the spreading awareness mission. As important it is to see AAC in action, it needs to be explained. Though none of these were long conversations, it was enough to convey my needs.
For every three people we have shared our AAC with, we’ve witnessed at least one of them telling another person, “we just met a girl who uses an iPad to talk”. Now if every AAC user did the same, our world would be that much bigger and this is what awareness is all about.
While traveling this weekend, we stopped at a Publix to pick up a few necessities. On our way out, a woman ran up to us, pointed to Jess’s iPad and asked, “ what is that?” For a split second, I thought she was just curious and then I realized, she knew it was an AAC device. Most people assume Jess’s iPad is for entertainment and they don’t realize it is her voice.
Quickly, I gave her an overview::
Before the woman returned to work, I handed her Jess’s card. I wish I could have shared more.
This moment was a reminder that Jess needs to take her Talker everywhere. AAC awareness is celebrated every October, however, in our house it is 365 days a year. You never know who you will meet and what a difference you can make.
Every month has a holiday associated with it.
New Year’s, we wipe the slate clean.
June is for brides, graduations and the start of summer.
Over the course of Jessie’s day, she sees only one other person using an AAC device (we call it her Talker). Imagine going to the market, a party or to work and no one expressed themselves or talked the way you did? Jess isn’t speaking a foreign language but she might as well be when she talks through her AAC device. This is why awareness is so vital. Half our problem is that people don’t know what AAC is much less it’s many forms. The other half is the assumptions people make.
For example, yesterday Jess and I were at a planning committee meeting. She saw a plate of cookies and asked for some using her Talker. Fine. No problem. Then she smiled at the lady sitting next to her and did her version of shaking hands resulting in the “oh aren’t you special” treatment (I mean this as no disrespect because Jess does present herself this way. It’s her way of working a crowd).
As the meeting went on, I don’t recall if Jess was making a comment, or was exasperated by the first speaker monologing (there were five more departments sharing reports) when she tapped “ridiculous”. This caused three people in earshot to chuckle and they gave knowing glances. At that moment, the woman next to Jess did a double take, she was re-assessing Jess. I then asked Jess to put her Talker into whisper mode so she didn’t interrupt the meeting again. I’m pretty sure she was bored and wanted to change the subject.
Whenever Jess goes anywhere, she wears her Talker. Every day she is exposing people to “her” voice. However, we need to do more.
For AAC awareness month, our wish is for every family that uses a device (or any of AAC’s many forms) to Pay it Forward. Tell three friends and ask them to tell three friends. Explain that when they share that they are making our world bigger. I want AAC to be as commonly known as a phone.
And if you are not an AAC family, I want you to pay it forward too. Here’s a sample script:
You: I just met a person that uses AAC
Them: What’s AAC?
You: It’s augmentative and alternative communication.
Them: What does that mean?
You: Dude you are already using it… when you text on your phone, you are talking without speaking. Some people aren’t able to speak so they use a computer to talk for them.
Actually, this script wasn’t made up. A few years ago we were having breakfast at IHOP. I overheard our waiter tell a co-worker how Jess ordered using an iPad.
Even though we educate people every chance we get, there is more emphasis during October. I’m hoping that when people Pay it Forward we feel a ripple effect because awareness has been shared.
Remember, knowledge is good!
The last thing Jess wanted to do was endure yet another dinner party. She didn’t have to voice her displeasure, I could read her body language. As far as she is concerned, these events are all the same. Everyone talks, she listens and the topics don’t interest her. However, this time, the tables were turned.
When each couple was given an AAC device, loaded with the app Speak for Yourself, her whole demeanor changed. Jess went from slumping in her chair, to sitting bolt upright. The playing field was now leveled and she was ready to get this party started.
Since October is AAC awareness month, my plan was to show our guests how Jess’s Talker worked. Besides understanding what it takes to use a device, my hope is that they share this experience with another person (if more, they get extra credit). Typically, when people see Jess with a computer, they assume it’s “just” a game and she is overindulged. I want to change this. I want people to realize that this is her voice.
After giving our guests a quick overview, I started with a simple question.
I started with Jess and asked, what did she want for dessert?
She replied, “ice cream” with “sprinkles”.
Ice cream has always been an ice breaker and this was no exception.
Everyone then asked where to find the words.
After having hands on experience with the AAC device, the group quickly realized, while this was easy to use, they had difficulty remembering word location. I assured them that this improves with practice. Just like they can access a keyboard, learning the motor planning for an AAC device is no different.
The question that got me thinking the most was, “I don’t need to use a device to speak to Jess, because I can talk to her”. True, but people like to be spoken to in their own language and Jess is no exception. Besides, this is one party game she liked!
ps- we could have started with Jess’s first word, exceptional, but I didn’t want to make this game too hard for our guests 🙂
A Big Year is an informal competition based on the honor system among birders. The person that sees, or hears the most birds gets to hold the title. I’m declaring this be an AAC Big Year! Of course, this is not in any way, shape or form a competition with another user. The focus is to achieve our personal best.
To kick off our year, we are using this AACtion plan. The theory is, if we improve the communication partners modeling skills, the AAC user’s success rate will increase as well. This is not just a theory, after only a few days on the AACtion plan, we are already hearing results! Yesterday, while on an errand run, Jess used some of the target words. How encouraging!
When introducing new vocabulary, Jess and I first sit together. It doesn’t take much to overwhelm her when working/modeling one on one. I get the “oh mother” sideways glance, a big sigh and then she exits stage left. Jess is like that horse you lead to water, learning can’t be forced.
I’m finding it is just as effective to go into immersion mode while she is in ear shot. I didn’t realize my using SFY to talk to the dog, the cat, the husband, had such impact? Up until now, I thought Jess suffered from mommy deafness. Who knew that you can model from across the room? Sure I suspected it all along, but not until now did I realize one of her special gifts was eavesdropping!
Jess is an efficient AAC user, but I have not stretched her to elaborate on her thoughts. This is because I didn’t know how. Jess’s style of talking has gotten her by at home, but doesn’t work with people who don’t know her, much less those who have never seen an AAC device..
The harsh reality is, if I don’t speak SFY, Jess will have no one to practice with. Sadly, in three years, only twice has she been with other AAC users. The first time was when we were at a picnic for Angelman Syndrome families (there were only two other devices and no low tech AAC’s were in sight). The other time was at a SFY workshop and EVERYONE had their device. Oh what a perfect world it would be if we could meet AAC users on a regular basis… I’m putting this out to the universe and adding it to my wish list.
I’m convinced that Jess’s level of communication will improve as I increase my SFY usage. The realization has hit me that when we both go out that I should use a device too. I need to model outside of the home when speaking to people we don’t know. Unless I’m able to do this, how can I expect her to? Since she is no longer in school, this is the most logical path. Not only does Jess have to learn how to hold a conversation with people outside our immediate family, but we need to pave the way for other AAC users that follow.
On a side note, Dad gave Jess a puzzle over Christmas. He thought it was something they could do together. I LOVE this idea, however, the puzzle is too difficult for her fine motor abilities. Of course, we’ve tried playing with puzzles over the years, but Jess was not able to tell up from down, lacked spacial awareness and was not successful. In the early years, there wasn’t a puzzle easy enough.
Just because you fail, doesn’t mean you stop trying. For now, I put the ambitious 300 piece puzzle aside (chosen because it had a pretty picture) and instead we are working on a 24 piece wooden puzzle. We are experiencing success! I’m witnessing how far Jess has come. Because Jess has been using SFY, her fine motor and attention span have improved exponentially! While I’m teaching her the skills to work on a puzzle (find the corners, straight lines, color matching), this is also giving us more language to talk about and this comes right back to the AACtion plan.
Whodathunk that a lesson plan would be a catalyst for so many changes? This project has increased her word usage, we are talking more AAC as a family (all devices are on the table during breakfast and dinner) and it has given us a jumping off point to expand our conversations. I repeat, we are seeing benefits after only a few days! This is just brilliant! Why has this not been done before? There have been core word monthly lists shared, but practicing words without a plan wasn’t very successful for us. It lacked meaning for someone like me that needs structure and is out of their element.
Unless you are able to practice words in a purposeful and meaningful way, it’s difficult to remember the motor plan. Take heart new and old #speakingAAC users, this system works no matter what AAC program you use.
Go AAC Big or go home… I’m already home, so I have no excuse, I’m going big!
I do declare, this IS going to be a BIG AAC YEAR!