For most of us, our voices emanate from our own vocal chords. For Kevin, our 20-year-old son with Mowat Wilson Syndrome – a developmental disability – his words are battery-charged, delivered by an app and wrapped protectively in royal blue silicone. And we love his voice.
By the age of two, we knew that Kevin had severe language issues. We held onto the hope that, by age 10 – an important milestone in speech development – he would have words with which to communicate. Perhaps it was naïve on our part; it didn’t happen. When he was 13, we accepted what limited progress he had made, stopped thinking about what he could not do and focused on the everyday things he could achieve.
Kevin always had the desire to be understood. He is driven to connect with people and he always used whatever means he could. Even before the iPad arrived, we had helped him learn sign language and surrounded him with pictures and other visual items that he could use to get his message across. But the results were haphazard at best.
Even though Kevin learned many adapted signs, most people he wanted to talk to didn’t know his language. Given how restricted his communication was at the time, a little sadness would sometimes creep into our lives. We knew we had a boy with a story to tell and no way to tell it.
Then came the iPad. Life changed slowly at first for Kevin, and then for our entire family. Through the dedication of his school team, every day new icons and words are added to his vocabulary. At more than 1300 words now, the Proloquo2Go app is the home of Kevin’s iPad voice. Built within his app are 35 pages, most with 36 words, represented by animated or real-life picture symbols. Voice output words and phrases are associated with each of the symbols. Kevin navigates these pages to share what’s on his mind – almost always with a stop at the people and activities pages.
This morning, within moments of waking, Kevin flipped to Proloquo2go and browsed the talk buttons. The iPad voice greets my husband and I every morning, too, as Kevin stands at our bedroom door pushing the buttons to tell us his plans for the day – what he will be doing and with whom. A morning ritual, Kevin reminds us he wants to wear a nice shirt – especially on the days of his internships, a detail we would not have known mattered to him before. In the afternoon, Kevin is excited to tell us news of the day.
Any sadness we once had has been replaced with pride and often amusement about some of Kevin’s unexpected interjections. Once, when I was talking about how Kevin uses his iPad at school, Kevin reminded me he uses it for his schedule, helping him manage his day more independently. After speaking on behalf of Kevin for 20 years now, filling in the words we think he wants to say, he now uses his own words to tell us what’s on his mind.
Kevin is the author of his own story every day. With his iPad voice, he is funnier than ever, serious and intent when he needs to be, and sarcastic or “frustrated” as he will tell us if things don’t go his way. For a guy who doesn’t speak a word, this voice is clear.
I remember when we heard Kevin express his very first emotion. This past season, as his brother was loudly lamenting a New York Cyclones hockey team loss, all fussing stopped when we heard Kevin’s iPad voice tell us “I am having a bad day,” on behalf of his brother – a phrase that was programmed into the iPad so Kevin could learn to express how he was feeling. That he could tell us how he thought his brother was feeling went beyond our expectations. (The day was great after that.)
Today, with three years of iPad-speaking under his belt, Kevin is a changed guy. We saw his most profound communication growth at 19 and 20 – something we could have never expected. The changes we see go much beyond the words. Nothing for Kevin has been as energizing or confidence-building as sharing his thoughts.
Kevin can now communicate with strangers, for example, something he could have never done before. The app helps him ask questions to people, like the grocery store clerk, about the location of a favorite food. But it also allows him to share his adventures with friends.
On Monday mornings, we load his weekend photographs to his Instagram account and his Calendar 365 app. It is a very common sight now to see Kevin and a friend looking at photos and videos, sharing a connected moment. His photos and videos of activities, family and friends are precious and let him re-live his favorite moments. As the years go by, Kevin will find photos of a holiday in anticipation of what’s to come. For the rest of us, we might find ourselves humming a song from camp, for example, that Kevin has played so many times. These experiences help us get to know who Kevin wants to be and reminds us of all the things he can do. Down the road, as Kevin and his friends graduate, Instagram and other social networks will be a way to stay in touch, much like how other people his age enjoy the platform.
We are so grateful the iPad helps him stand tall and be heard. People with a “special” someone in their lives know what they have to offer. Others around us and in the general population sometimes get it, but many times they don’t. They tend to associate speech with ability.
These days, when Kevin speaks, people listen.