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The home for VPR's coverage of health and health industry issues affecting the state of Vermont.

Moulton: A Grandson's Voice

Mariah Riggs
Melinda Moulton and grandson, Rowan Riggs, took in the view together recently from the top of Mt. Philo.

Rowan Riggs, my grandson, was born 13 years ago. As a baby, Ro was well behaved, mellow, and affectionate, but he could not speak. We noticed that he would not respond to his name or show enthusiasm for his toys, but he enjoyed doing things like turning a light switch on and off - over and over again. When he was finally diagnosed with autism, it was a relief because now we could, in earnest, help him learn to live in the world of the typical human.

I do not like using the words intellectual disability to describe autism because I do not see Ro’s autism as affecting his intelligence. He is really neuro-diverse because he thinks differently than I do. He sees, hears, feels, tastes, smells, and responds differently.

Still, Ro has tremendous challenges because he cannot speak. Living in one’s own mind knowing that it is forever is a burden no human should have to endure. And we knew he was smart but could not prove it. So after viewing the Film “Wretches and Jabberers”, we introduced Ro to “facilitated communication” and Pascal Cheng.

Ro’s first words - which he typed very slowly, with his wrist supported, one finger at a time, were: “Do you work with kids who cannot speak?

His very next words were “I love you Mom.”

With facilitated communication Ro can let us know what is on his mind - a mind that is full of wisdom, humor, hurt, concern, insights, and enlightenment - a mind that experiences the world in a very different way than the rest of us.

After 8 years of living without communication Ro’s voice was finally unchained and he had a whole lot to say. My grandson has become a poet. He wrote this poem for me on my birthday.

out of love the joy it bubbles
in waves the tender grasp of eager hearts are renewed
to banish the cold frost
the warmth of your love
burns to become spring.

We all have so much to learn from people with neurodiversity. I have learned that I need to listen, live in the moment, see what is beneath the surface, appreciate silence, be patient, show gratitude, and stop sweating the small stuff.

Update 6/12/2018: The headline has been changed to better reflect the subject of the commentary.

Editor's note: Facilitated Communication is a highly controversial treatment. Many in the scientific community question its effectiveness.

Melinda Moulton is the CEO of Main Street Landing, spearheading 250,000 square feet of built environment on Burlington's Waterfront.
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