David Matter arrived in the world a “floppy baby,” as his father Bob described it. Twenty-three years ago, via a breech emergency cesarean section, he made his appearance: at a low weight, with low muscle tone.
At 12 months, he weighed the same as six months: 15 pounds. He was nonverbal, unable to sweat and therefore unable to regulate his temperature, he sat up later than other babies, and was almost two before he took his first steps.
After those first two years, and what felt like endless testing to his family, David was diagnosed with autism spectrum disorder (ASD). ASDs are developmental disabilities that can cause significant social, communication and behavioral challenges.
Instantly his father felt he was bombarded with labels for David and a laundry list of “everything he can’t do.”
“He’ll never be a world-class athlete,” one physical therapist said according to Matter. “Why does he need to go (to school), he can’t do anything,” a teacher said.
But Matter didn’t see him as broken the way some others did.
“My goal wasn’t to fix him,” Matter told the Denver Catholic Register. “But to see what power he had as a human being … to see the amazing person he is.”
David has a phenomenal memory, his father said; is a meticulous speller, can now make 15 sounds, masters technology including his iPad, passed the entrance exam for community college, and regularly shows a sense of humor with Matter, his stepmother Carrie and his two little brothers, ages 1 and 3.
And there is another skill that David has mastered: cycling.
“I learned how to ride my bike when I was 4 years old,” Matter said. “For my son it was a tricycle at 12.”
Bikes are a rite of passage, he said, a way to open a whole new world.
“When I learned how to ride, it started me on the path of independence and freedom,” Matter continued. “The wind in my face, disappearing from the house until the street lights came on and the joy of exploring the world around me were all part of my love affair with my bicycle.”
He wanted David—and others with disabilities—to experience that sense of liberation.
“If I wanted to see that change,” he said. “I had to be the change.”
In 2007 he started Assisted Cycling Tours (ACT). ACT opens up the world of cycling to those with disabilities, developmental or physical, and their families, through clinics, day trips, weekend trips and week-long bicycle trips using adaptive bikes.
“We’re all-inclusive; we work with every disability,” he said, specifically mentioning ASDs, Down syndrome, traumatic brain injuries, Parkinson’s disease, stroke and Multiple Sclerosis.
There has only been one child Matter couldn’t successfully get on a bike.
“They’re so excited about getting on a bike,” he said. “(Even when) you have somebody that’s terrified, crying and screaming; once we start moving, it’s all smiling and laughing.
“It gives them the opportunity to overcome their fears.”
Assisted Cycling Tours also helps fill a need for recreational activities for families of individuals with disabilities.
“They get to have the experience with someone meaningful to them,” he said of the program that includes parents, siblings, spouses and other caregivers.
Using a bike for advocacy, ACT aims to make structural changes to a family, not just cosmetic ones.
“It helps change perspective,” he said. “And teach them how to operate as a family unit.”
Trips are designed to accommodate novice cyclists and can be adapted for advanced cyclists as well. From May through October, ACT plans to organize weekly weekend rides of varying levels. There is also a team of volunteers willing to captain tandem bikes.
“Life is a shared experience,” Matter said. “ACT invites you to share cycling with a loved one who has a disability.”
April is Autism Awareness Month | April 2 was World Autism Day
Msgr. Zygmunt Zimowski, president of the Pontifical Council for Health Care Ministry, marked the seventh World Autism Day with a statement asking how to beat the stigma of autism.
“How can this stigma be combated?” he wrote. “A pathway of integration within the community must be followed which breaks down the isolation and the barriers that are established by these disorders and by prejudice, thereby strengthening personal relationships.”
This is possible through social commitment with coordination in the fields of care, information, communication and formation, he wrote, “thereby fostering a move to true understanding and acceptance of this illness which never denies or undermines the dignity with which every person is clothed.”
Msgr. Zimowski announced the council’s international conference Nov. 20-22 at the Vatican will be themed: “Autism, an Illness with Many Faces: Generating Hope.” There researchers, experts and health care workers will address the education and social integration of those who suffer from autism spectrum disorders in what he described as a “moment of dialogue and commitment.”