Imagine that you cannot talk — not to ask for help, explain how you feel or even tell someone you love them. I often imagine what my life would be like without speech because of my grandson, Rowan Wilde Riggs.
We call him RoRo. He is 9 years old and unable to speak. He was diagnosed with autism when he was 2.
Today, one in every 100 children born is diagnosed on the autism spectrum. Some never gain the ability to speak, and there's no explanation why.
In the first two years of RoRo's life, he said a few words — "bottle," "bath," "milk" — and then stopped talking completely and instantly as other nontypical behavior emerged. Since RoRo was 3, a wonderful speech professional at his school has worked diligently with him to help him speak — to no avail.
To communicate, RoRo learned to work with pictures and words printed on cards. This technique is called PECS, short for Picture Exchange Communication System. If we hold up two cards, he identifies them quickly — almost without looking — and taps the one he wants. He can sign "more" by repeatedly touching his outstretched fingertips together. He moves his hand up and down by his side to say "hello" and "good-bye." To show affection, he touches our lips with the back of his hand.
Unlike some autistic children, RoRo rarely screams or acts out in his struggle to express himself. We try to be aware of RoRo's every need, and he is generally a well-behaved, deliberate and happy boy. But on rare occasions, he will cry — a soft, muffled moan suggesting deep sadness or loneliness.
This was his world until we saw the film Wretches & Jabberers.
The 2011 documentary is about two autistic men who live in Vermont. Because of their limited speech, Tracy Thresher and Larry Bissonnette were considered of low intelligence and excluded from normal schooling their whole lives. As adults, they learned an aide-assisted typing method called facilitated communication. The film shows Thresher and Bissonnette to be extremely smart; they even travel the world to communicate with other autistic individuals through typing.
The film was transformational for our family. Because of RoRo's limited communication, we had no clear understanding of his intellectual capabilities. His autism makes even simple tasks — such as eating with utensils and going to the bathroom — a struggle.
Wretches & Jabberers showed us that communication for nonverbal people with autism is possible — with the right support, training and technology.
I immediately set up a meeting with Pascal Cheng, who worked as Bissonnette's facilitator. RoRo's fine motor skills are not developed — he cannot use a pencil to write and has difficulty making the correct finger movements for sign language — and we wondered if facilitated communication would work for him.
At their first meeting, Cheng and RoRo sat down in front of an iPad. To help RoRo organize and control his movements, Cheng supported RoRo's wrist as RoRo tapped each "key" on the screen. Cheng's backward pressure slowed RoRo's hand down and allowed his thought process to catch up to his typing.
After a few sessions, RoRo typed his first sentence: He asked if Cheng worked with other kids who couldn't talk.
At that moment, it felt like life itself opened up for RoRo. All the years of pictures and word training have made him an excellent speller, a terrific reader and now a communicator of the written word. He works hard — so very, very hard — but with the help of his iPad, RoRo is talking for the first time in his life.
Through typing, RoRo has transformed from a speechless child whose abilities were deemed " limited" to a bright and curious third grader with tremendous capacity to learn and contribute to the lives of others.
He has told me he loves me. He has described his grandpappy as being "absolute," by which he means free from imperfection. RoRo writes about his feelings and tells the doctor where it hurts. He now spends more than 75 percent of his time in a classroom with peers, where he is making friends and learning. His math skills are above average; he does all the calculations in his mind and types the answer.
As he has learned, so have I. RoRo has shown me what it means to have strength, courage and patience. He has taught me to be quiet and just listen, to respect people's boundaries, and embrace the simple pleasures of life. What matters most are those things that smell good, feel interesting, look intriguing, taste yummy and sound beautiful.
The world has opened up to RoRo. And for the rest of us, the world is far better with him as a part of it.
South Pomfret, VT
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