We continue to follow Mary, as she spends the week voiceless and using the iPad mini with the Speak for Yourself (SFY) Augmentative and Alternative Communication (AAC) app to communicate. Her daughter, Jess, uses SFY to communicate.
Here is Mary’s journal entry for her 7th voiceless day:
“Husband is still trying to guess what I’m going to say and finish my sentences for me. He would not do that if I were verbal. This is a lesson I need to learn. I’m a.k.a “Mary-interuptist”. Hopefully I will control my A.D.D. and O.C.D and this trial will help me be a better listener. This is my apology to all of those that I’ve interrupted…the line is long.
We are now at church. Some friends just feel awkward or silly talking to me through mini-me. It must make them uncomfortable because it is tedious to listen to me trying to put sentences together. Probably, my daughter makes them uncomfortable too because they just don’t understand her. Sometimes it is just hard to get past the package.
I’m realizing, if I’m slow at remembering where the icons are, how can I expect my daughter who has motor planning issues to navigate? I’m proud to say that she made her first sentence after having the device for a week. She was so proud of herself to share a comment about a movie we were watching. Gave her great satisfaction to know that I knew that she knew, I knew! Lol…. I can honestly say that Jess knows more words on SFY than I do. It saddens me to know that people only have enough patience for me on this app to say hello. They really don’t want to engage.
Today was asked to be with the babies in the Bunny Burrow while church service was going on. It was not an issue that I was unable to talk. Is cooing to a baby cheating? I had the pleasure of being with six month old Audrey. Showed her mini-me. She liked the cause and effect of the words, but she had more important play on her mind today. Babies get so frustrated since they can’t tell us exactly what they want. We have to guess. That sure is stating the obvious.
Not being part of conversations is getting more and more isolating. I’m so proud of my daughter. How she has learned to navigate in the speaking world. Jess had just turned 21 when we found SFY. She has learned to accept her non-verbal world, however, the more and more she is able to say, the happier she is becoming. (Jess’s diagnosis is Angelman’s Syndrome. They tend to be very happy, smiling people. Even they get frustrated though. Finding SFY is a prayer answered.)
After service, I chose to go wait in the car instead of trying to be part of conversations. Now I understand why Jess retreats from large groups of people. Hopefully, one day, we will both be able to use SFY to the extent where we won’t want to leave a group, but can join in. The realization that I chose to do what is easier was a painful truth.
The young children that are learning SFY really are at an advantage. They are learning language at a more typical pace. We are cramming 20 years worth! Hopefully, you parents (Moms AND Dads) appreciate how fortunate you are that technology is getting more user friendly. I’m hoping that this week of being dedicated to AAC/SFY that my experiences will further help the developers, as well as the families, so they will continue to tweak and upgrade their app. The value of SFY has only grown in my eyes after this experience. Just because it is a relatively new app, a new format of communication, I see SFY becoming the new standard for AAC. The developers are committed to make this the best App. They are always thinking of ways to improve. Because it is a small company, they at least can make changes quickly, however, they have to make changes with great thought and vision.
Driving today to visit John’s sister, Julie (who happens to be one of the strongest, gifted woman I know, and like her Mom, is a strong advocate for my daughter) we are listening to Pandora which is playing Frankie Valli (since we just saw Jersey Boys)…. anyhow, the early years were called do wop. Was this because of the demographic of Italians in this music genre? Who knows…I just love a play on words. Ironic since there has been a language speech barrier in our home. God does have a sense of humor.
As we are driving. This is how my brain works. I see a store front sign that says “Bridal Saloon”….oh no, it’s “Bridal SALON”. No wonder my daughter has issues, she inherited them from me : )
I miss singing… wanted to sing to Bye, Bye Miss American Pie… then the song “It’s in his Kiss”, you know, the Shoop, Shoop song by Betty Everett… California Girls/Beach Boys. My daughter is missing all of this. Singing is such a joy, even when you can’t sing.
Ok, back to the App. When we think the child is having a lot of mis-hits with words, many times it is poor motor control, but I’m believing that it also has a lot to do with trying to remember where the words are. I do this too when I’m trying to find the right word. Sometimes, Jess messes with us by saying every word but the one we know she is trying to say. The best example of this was when she was searching for Diana’s name last night. She said EVERYONE but Diana. It was then I realized that there was no photo with the icon for Diana. Diana was not “presentable” to take a photo last night. She is going to have to tell me when she is ready for her close up so I can have a photo with the name.
Without words, I find myself hugging Jessie more to tell her that I love her. It is true, actions do speak louder than words, but words do connect us to people too.
Tonight I was in the den writing this journal entry when I heard Jess in the other room on her iPad say “conversation, Dad”… a few other words and then I heard her say “Mom is not dumb!” Wow! That gave me as much of a thrill as when I heard her say “Mom, I love you” (to say that she searched for each word separately, this was not a pre-programmed phrase).
Final story of the night. Our good friend Karen joined us for dinner. Jess said “party”. Karen said “it is my birthday tomorrow so I guess this is my party”.. Jess spontaneously said “Happy Birthday”….. awe…. This Mom is going to sleep very well tonight and it has nothing to do with the wine that I had with dinner. Good night everyone!
Only one photo share tonight. This is of sweet Audrey who I had the privilege to spend the morning with…”
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