Well, today was the last day of Mary’s Voiceless Week. She is the mom of 21 year old Jess who uses the Speak for Yourself Augmentative and Alternative Communication (AAC) app. Mary spent this last week using Jess’s back up iPad Mini to communicate. Thank you, Mary, for letting us into your life and sharing your daughter, thoughts, insights, and humor with us.
Here is Mary’s final journal entry:
“‘We learn just as much, if not more, from our failures than we do from our successes.’
If everything fell into place neatly and there were no challenges, really, what have we learned?
With that said, today was an utter disaster. We left early to allow for extra time for the drive to get to Kidzdent in Old Bridge, NJ. As we were driving, I realized, I wasn’t able to talk to Jess. I can’t very well use the iPad and drive. (Even though Heidi promised that she would bail me out of jail, I didn’t want to use that card yet. I’m saving the get out of jail free card for something really big, if it were to ever happen).
Very, very difficult to find a dentist that works with special needs AND is good. An hour plus drive and my GPS took me to an empty parking lot. I had to actually call the dentist office and have Kim try and figure out where I was so I could make our appointment. Kidzdent does not only have a exceptional practice, but their staff is equally as good.
After being lost for 20 minutes, having to use my real voice, I felt like I failed my week of being voiceless. I had been challenged that I could not do this! I tried to pull myself together and go back to the iPad, but I was just too flustered. Technically, the week ended on Sunday at 6pm. Obviously, I don’t do math and did not need to be voiceless for eight days. However, today proved the point of how important being verbal and being able to communicate is.
On the return trip, there were two bridges under construction and dear old useless GPS wanted me to drive in a circle and come back to the road that was closed. Eventually, I beat the system and made our way to our next appointment. Went to get new sneakers for Jess that had been on order. I was back to using the device. At the shoe store, they kind of looked at me strangely, but at this point, I really don’t care.
The highlight of the day was visiting my niece who works at Hamilton Mazda. Used the device to chat with her, eventually moved on to using pen and paper. Showed one of her co-workers the iPad and Tonette explained what I was doing. Another shameless plug, go see Tonette at the dealership if you want a stylish new Mazda! Jess was happy to see her cousin. It had been awhile.
With all of these technical issues going on today, I asked myself, what is our backup plan when technology fails us? This question really is pointed at the ##&@@#! GPS and not the iPad, however, communication should be multi-level. Jess and I must learn some basic sign to fill in the gaps.
So now that my week is officially coming to an end, I realize that there was so much that I didn’t know that I should have. For parent’s that are using AAC devices, you MUST learn to communicate just like your child. It’s great to ask them questions and they answer, however, if you want your child to build language you have to model, model, model. This is even more vital to those that don’t read.
We are at the beginning of a great new adventure. Witnessing Jess making such amazing strides in a relatively short time has me humbled, and I’m in awe of her.
Learning SFY is like playing the game Concentration. Eventually, you know where all the cards are. This is why it is key that the words always keep their place so you can find them. To learn a language, there are no short cuts. You have to drill, drill, drill.
Just can’t emphasize this enough. We all want our children to talk, but we can’t lose sight that it is just as important that they are able to communicate.
My daughter is 21. The young ones have such the advantage of having AAC at such a young age. Reading about the young parents reminds me that I had been where they are now.
If heredity has anything to do with it, it is very likely that I will lose my hearing like my Mother. At least I will always be able to communicate because I have SFY. I will be able to stay connected to the world. Isolation is a very lonely world.
This afternoon, I was interviewed about my being voiceless for a week. I was asked what made me think of it? My daughter had been featured in the Moxie Woman Magazine in their July/August issue. After reading the article that had been written about us, it made me ask myself, what more can I do? One of the magazine’s sales people saw the changes in Jessie that she had witnessed, changes that came about because Jess can now Speak for Herself. She felt that this was a story that needed to be told. Hopefully our journey will educate other users as well as the general public that everyone has something to say.”
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