Journeys are Best When Shared

This post is a footnote to the Voiceless But Still Talking (With AAC) Challenge that Mary completed yesterday.  For those of you who may have missed it, Mary is a curious and ambitious mom who used her daughter’s back up iPad Mini and Speak for Yourself Augmentative and Alternative Communication (AAC) app to communicate for a week (technically 8 days) and shared her experiences with us each day.  I am fortunate to know Mary and her family, and several other important and meaningful people in their lives.  You know who you are.  I’d like to tell you about our first meeting because as Mary said, “Journeys are best when shared.”

When I first met Mary, her daughter, Jess, had just turned 21. A former colleague asked if I would be able to help her friend of a friend. She told me that she had a 21-year-old daughter with Angelman Syndrome who didn’t have a way to communicate, and they weren’t sure how much she understood. I told my former colleague to feel free to give out my number, and I received a phone call from Mary that afternoon.  It was December, a week before the break, so I made plans to meet Mary and Jess over the break. I told Mary that if Speak for Yourself wasn’t the right fit, I’d do my best to figure out something that would work for her daughter.

I was greeted at the door by two beautiful dogs and as I made my way through their noses and tongues, I introduced myself to Mary and then put my hand out to shake Jess’s hand. She pulled me towards the table and sat next to me.

I started to explain that the iPad was to help her tell people whatever she wants. I closed most of the icons and explained that when all of the vocabulary was opened, those first words would remain in the same position. When I touched babble to open all of the words, Jess shrieked with joy. I touched babble to close most of the vocabulary. I was concerned about her fine motor skills and I wanted to make sure she would be able to access the buttons. I modeled some of the language that was open, and Jess took the iPad and put it on her lap. I said this is how you open all of the words and pointed to the “babble” button. I used the other iPad to explain the app to Mary.

When I looked back at Jess, she had all of the words open. I responded to each word as she explored the app, watching her fingers for accuracy. When she said “exceptional,” Mary said, “You sure are exceptional!” Jess started laughing. I told her that she could keep looking at the app and I was going to talk to her mom. A couple of minutes later, we heard the app voice say “exceptional” and Jess started laughing and reached her hand out to her mom. With nearly 5000 words open, she had found the one that elicited a response from her mom.  In that moment, I knew she could be successful.

Mary insisted that she wasn’t tech savvy for a couple of weeks…until one day she texted me to say she added a word at a red light.  After that, I would get texts from her with pictures of what Jess had said with the iPad and the context of the communication.  They made me smile every time.

Spoken when Mom and Dad disagreed.

Spoken when Mom and Dad disagreed.

Just being clear about her cookie flavor.

Just being clear about her cookie flavor.

There are some people who are meant to be in your life, and I certainly feel that way about Mary and her family. Thank you to Mary for sharing her “Voiceless But Still Talking Challenge” with us this week. Many of us have enjoyed her insights and ambition to understand her daughter’s world.

There are ties that bind us all together and the amazing and overwhelming truth about that is for better or worse, we have the ability to change lives and be changed ourselves.
Thank you to all of the parents and professionals who share their children and their journeys through blogs, photos, and videos so that we can learn, laugh, and sometimes cry…but ultimately so that we can be better.

Chatting at the bar

Chatting at the bar…because she can.

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