After listening to my mother and I chatting, my father once said: “the sum of your conversations is nothing”. Well, maybe it was until it wasn’t. Often Dad would listen and then ask us to repeat something when he heard a tidbit that interested him.
In my father’s defense, even though he wasn’t interested in the daily minutia, he loved learning. Dad also enjoyed sharing a good story. One of my favorites was about his serving in the Navy. He was on the aircraft carrier the Shangri-la. He told us about the time he had received a letter from a buddy who was in the army and was complaining that the food was cold. Dad replied using the back of the ships menu for stationary. As much as his friend enjoyed the letter, he re-read that menu. I need to share this story with Jessie. Dad passed a month before she was given the Angelman Diagnosis, just after she turned 13.
In order to captivate someone’s attention, you need to talk about something that intrigues them. Even though my father wasn’t fascinated by woman’s small talk (my husband falls into this category) that doesn’t mean these conversations aren’t important.
When Jess was little, on rare occasion, she’d pop out with a word or short phrase. I assumed that she was going to talk. Even though this never came to be, because of my belief, I never stopped talking to her. Our longest conversations were had on long car rides and to this day they still are.
While driving, there are no outside forces to interrupt us. If a good song came on the radio, I would look at her and she would turn up the volume. While I sang like a cat, she’d bop her head to the music.
In between the songs, I’d talk about where we were going, who we would see and share stories. Sometimes Jess listened with rapt attention, but she often drifted off to her own thoughts. As I write this, I’m realizing how much she is like my Dad. If I say something that is of great interest to her, she becomes completely engaged. She’s also inquisitive like he was.
Now fast forward 25 years. Our story is slightly different. Jess is still not one for small talk and we don’t make conversation per se, but she is beginning to open up more. What’s difficult for Jess is that most everyone she meets has never met anyone that uses an AAC device. This means that at home, we need to step it up. Even though I’m talking and she’s tapping her words, her conversations broaden when I use a Talker. I’m reminded that I should speak her AAC language on a daily basis… I need a kickstart. This week we began the 12-week AACtion plan challenge but we are doing an accelerated version. Initially, this was to help make me become a better communication partner, however, this time I thought we should do this together. Thank goodness, Jess has better Talker skills than I do.
At least this exercise gives us more to talk about. Jess gets satisfaction when I have to search for a word, especially when she can find it easily. What I am careful about is to not make her feel like she is being tested. I don’t have her repeat the words 10x like they expected at school, but rather follow her lead and repeat once or twice. I’m the one that needs the repetition.
There’s an aspect of SFY that often gets overshadowed by other features. The symbol initially helps you find the location of a word, but the written word is also found above the symbol. At dinner last night. I thought I was being clever and spelled to husband S-A-L-A-D because I wanted Jess to eat her dinner and not just salad. Jess immediately tapped “salad”. Then I asked her, “did you say that because of what I spelled?” and she immediately replied “yes”.
Jess has never been taught to read. Of course, we sang the alphabet and tried to read to her, but due to her three-second attention span that wasn’t very successful. What is noteworthy is even though I didn’t think she was following along, she was. Even though she didn’t give me any indicators that she understood, she did. When using an AAC device, hearing the word models language and seeing the written word is helping with literary skills. How exciting!
I’ve had a few conversations recently with other Angelman mothers who told me that Jess is doing so much more than their child. In many cases, Jess is significantly older. I’m also careful what I write about when it comes to Jessie and her challenges. This is her story and I’m privileged to share it. Because of this, a lot is left to the reader’s imagination. You need to know that we struggle and she has made steady progress over time.
What most don’t realize is where Jess started from. Jess’s path reminds me when I was in 5th grade. I remember not understanding something in class, but when it was reviewed in 6th grade, suddenly I got it. This seems to be Jess’s road too, but it’s taken her years rather than months. It’s so important to reintroduce things where they have failed. It might not be the second or tenth time they find success, it may take 500x.
It’s been a long, long, long road, however, I believe that it was our small talk that kept Jess thinking and her big Talker that has changed her path forever.
Just keep talking, just keep Talking…they are listening!
When I started writing, three and a half years ago, there weren’t many blogs about young adults with
After having a rough day at her new program, I knew a meeting needed to be set up pronto. The following week, I met with Jess’s job coaches and program manager. While we were huddled together at a small table, Jess was sitting with her group, with her back to us and was eavesdropping in our conversation. The focus wasn’t about her per se, but showing them how the app 
The first part of the meeting was an overview of SFY. This is Jess’s voice and it’s vital they understand her language. I could see that they were overwhelmed by Jess’s home page. Most likely they were thinking, if it was difficult for them, how could Jess possibly access this to talk? I explained that Jess began with a few words and then words are added as she needed/used them. This isn’t the same as learning vocabulary and word meaning, as it is motor planning and where to find the word. In the beginning, you scan for the word you are looking for. As you get more proficient, your finger automatically knows where to find the word without thinking. This is how we all access a keyboard. We don’t think about each letter we need to tap as we type.