We are following an amazing mother’s experiences as she goes voiceless for a week to better understand and support her daughter’s ability to “navigate in a verbal world.”
Here is Mary’s journal for the 4th day, using an iPad mini and the Speak for Yourself Augmentative and Alternative Communication (AAC) app to communicate:
“This morning, when husband was leaving for work, I told him that I expect him to go voiceless one weekend. He looked at me, smiled and said “we will see”. My guess is he realizes that this isn’t a way he wants to communicate, however, I know that he will have more patience, support and interest in Jess when she is trying to tell him something. If she is repeating the same things, it is because that is as far as her language goes at this time. Already I am seeing some growth in her over these last few days. She is now listening to my new voice and she is trying to find more words on her own. It just takes a long, long time to learn any device.
My sister Julie has given me props for being voiceless for a week. As I told her, this is not an original idea. There was a group of students that did this months ago in England. I realized that our family was slipping back into some non-verbal communication and I needed to do something drastic to prevent that from happening. We model our speech every day to our children. They learn words over a period of years. With SFY, we are doing the same thing, but at a different rate of speed. Because it is at our fingers tips, people expect more. So, to humble people, I put on the babble feature which shows ALL the core words. It is overwhelming. This is why it is so important to remember the location. Long ago, I realized that I don’t really remember phone numbers as much as I remember the pattern of the numbers. This is another reason it makes sense to use a speech program where the words stay in the same place so they can be easily found. This was one major reason I did not like the PECS (picture exchange system) because there was so sense of order. The cards could be put willy nilly anywhere. How does that make language easier? Especially when the child has motor planning issues. Isn’t this why we put our keys in the same place every day so we don’t lose them?
Stopped at the market before heading to the barn. One of the ladies pulled me aside and said that everyone was talking about the iPad after I left yesterday. They all know me and my daughter. Shop-rite of Pennington, you rock! Best employees!
Clear blue skies, crisp air and no wind makes for good riding. I’m so blessed to have a friend share their horse while they are at college.
Because I had a meeting at 9:30, I did not take my iPad in the barn with me. Michele explained to another rider that I was not being rude by not talking. She teased me at how nice this is for her to have quiet in the barn. When the other rider was passing by with his horse, my horse was on the cross ties. The other horse is about 17 hands which is quite big. Well, the rider didn’t get the cross tie over his saddle, it got caught, and I had no voice to tell him to stop! Because I do speak, I do not have a natural guttural response. I could have yelled, but I am so into this non-verbal trial, it didn’t occur to me. The cross ties are made so they do break away if the horse pulls back suddenly. This did end up by happening. The event is noteworthy because we rely on our voice for every day situations.
A church small group was to be meeting at Starbucks. I was excited because I was going to be able to order something with mini-me (that is my nickname for the small iPad). Unfortunately, even in the speaking world, information is not always conveyed well. We ended up having meeting at the church.
To sum up the meeting, this quote comes to my mind:
“Now Myra Gulch, for thirty years I’ve been dying to tell you what I think of you and now, well, being a Christian woman I can’t say it.” -Auntie Em, The Wizard of Oz.
After the meeting, on my drive home, I was sobbing. Heartbroken is the word that best describes my emotion. Most of the group was interested, polite and considerate. I hate having to write this in this blog, but I feel it is important to share the unvarnished truth.
These were the responses one person made:
I was asked if I could turn the voice off
I was asked “how long does it take you to say what you need to say?
Once it was explained that this was my voice that I was doing this to understand Jess and be able to help her navigate in a verbal world, she said “ok, I get it, now let’s talk about something more interesting”
So this is the real world. When you are unfortunate enough to come across someone who has no patience because it is a bother to them, what are you suppose to do? There was a moment I just wanted to tell her that she was being rude, self centered and hurtful. This is what my daughter has to deal with every day. This is why I sobbed. The world is so cruel. The cruelest part of all was this woman was a friend.
The three women totally got it and were supportive. It was difficult to be part of the conversation. By the time I got my phrase typed in (there is no way they can wait for me to find the icons. I practice using the icons at home when I don’t have to keep up in a conversation. I think that is fair to others at this stage of my learning). The conversation had moved on 3x so what I had to say wasn’t pertinent any more. Sigh… Overall, one bad apple shouldn’t spoil the whole bunch, but it certainly makes me feel rotten.
So now I have the rest of the afternoon to myself, to my own thoughts. I need to pray. God has brought me to this, he will bring me through this.
Learning how to navigate on SFY or any device is much like learning the QWERTY keyboard. You have to remember where the keys are before you can build speed.
People are more patient when they hear the word when I choose the icon. They think they have to spell and guess the word when I am typing. Typing is very annoying. There is no way to type while they are talking because they hear you (even on lowest setting) so they assume you are not listening. However, really it is just multi-tasking so you can stay current in the conversation.
The night ended well. One of our best friends was here for dinner. This was the most natural conversation I’ve had with the iPad. Slowly learning icons… s l o w l y…. I have nearly all the core words open on the first page. It still overwhelms me, but I’m adjusting.
Tonight, no ice cream… It is time for the wine.”