Autism. The diagnosis has become almost as ubiquitous as the word ‘cancer’. I’m sure that if you think about it for less than a minute, you can think of a handful of people in your life affected by autism. The diagnosis comes with a host of behavior attributes that are as varied and unique as the children diagnosed. Autism itself is a spectrum of ability - children can be high or low functioning, verbal or nonverbal etc...
When Gentry Groshell was diagnosed at 15 months with “sensory dysregulation” her mother, Amy, knew that it was a band-aid diagnosis. The official diagnosis came when she was just two years old. For the next several years, Amy tried therapy after therapy trying to help her daughter. Gentry hated it, and unable to communicate, she used her behavior to voice her displeasure. Amy was tired, heartbroken and focusing on behaviors kept her from seeing the person behind the behavior. When Gentry was seven, Amy made the decision to stop trying to fix her autism and embrace her daughter for who she is. Presumed competence is a novel idea in the autistic community, but it’s what felt right to Amy. Trusting her instinct as a mom, she assumed that Gentry (with the right supports) was not just capable of living a ‘normal’ life but also wanted to. The thought, “What if this child can teach me?” burned in her heart and as Amy flipped the tables of conventional parenting Gentry, the daughter behind the autism, emerged. Living close to the ocean and knowing that Gentry loved water, Amy decided to send her to surf camp so she could learn to surf. Turns out, Gentry is a natural! Already using music as a form of communication, Amy began taking Gentry to concerts. Unable to find a church to attend, Christian concerts also served a dual purpose. Howard, Gentry’s stepfather, an art admirer began painting alongside Gentry. Today, Gentry’s paintings hang on walls in galleries around the First Coast and Howard has sold several pieces as well...all benefitting special needs charities. Now Gentry’s art adorns clothing and jewelry so everyone can afford her work. Prom? Of course! Gentry’s date - you read that right - wore a vest that matched her red dress perfectly, and they were whisked away in a stretch limo other teenagers wish they could rent.
Gentry was 18 when Amy heard about Facilitated Communication in a way that made her stop in her tracks. She’d heard about it before as it’s been around for a long time - but there’s controversy surrounding it. To be fair, any therapy can be done incorrectly. But, the ability to misuse this type of therapy is increased because facilitators help nonverbal children (and adults) with autism and other disabilities by placing a hand on their arm to provide the resistence they need to integrate their thoughts, eyes, and hand so they can type words on an ipad. This time - however - was different. This time, it was personal.
The former Assistant Dean at Syracuse University who taught Facilitated Communication had retired and was now working as a consultant. She was in Indianapolis working with a group of families there and Amy knew the boy that she worked with. When Gentry was a small child, Amy lived in Indiana - and these families were her friends. She’d played on the floor with Derrick when he was a small child. She’d laughed and cried with his mom. They shared the same struggles as mothers of autistic children. As she read Derrick’s first words which had been posted to Facebook, a flood of tears was unleashed. It had been years since she’d let herself cry - but now, she couldn’t stop the tears. Should she do this? Could she do this? What if Gentry couldn’t do this? Everything else had failed. Would she be crushed once again under the weight of disappointment? Wanting others to do it with her, she asked two moms she knew very well to try this with her. One laughed, the other never called her back. The doubt and the fear were almost crippling.
But Amy knew one thing, if there was an ounce of hope to help her daughter - she was morally culpable to provide her the opportunity. Through the doubt and fear, she booked a weekend with Marilyn Chadwick, the renowned facilitator. And then, kneeling in an airport chapel with stained glass windows on the walls, Amy whispered the prayer, “Lord, help me in my unbelief”. From that moment on, everything changed. Marilyn flew into Jacksonville, and spent 3 whole days with Amy and Gentry. From 9am-8pm every day, she taught motor planning competencies, whispered truths to Amy about her daughter that she’d never heard before, and encouraged them. She never reprimanded Gentry, never forced her to do anything, and never reprimanded Amy as a parent. The weekend was a type of gift comparable to childbirth for Amy - she recalls feeling every emotion possible: joy, pain, sorrow, ecstasy. She’d left the door cracked ever so slightly to hope and it changed their life.
18 years of guessing. 18 years of pushing and striving, surrendering and learning. 18 years of motherhood spent searching for her daughter behind the autism. 18 years of investing into who her daughter is capable of being despite autism. And then, one Friday morning, Gentry’s first words, “sweet to see my letters. Easy to free my thoughts”. No longer does Amy have to guess what Gentry wants. Hair cut? Side swept bangs! Nail polish? Fuscia! But why stop there? Amy and Gentry can dream together now. Gentry can express not just her likes and dislikes, she can express her hopes and dreams for the future. She can talk about what it was like to live for 18 years without a voice. It was, in her words, “a torture chamber”. Mercifully, she doesn’t have to live in that torture chamber any longer.
Amy changed the life of her daughter with Facilitate Communication, but she didn’t stop there. Gentry’s friends describe life without a voice as “utter darkness” and “an abyss” and in Part 2 we’ll talk about how Amy expanded their breakthrough to her community.
**featured image is one of Amy's daughters, modeling in honor of her big sister**