By Jolene Cleaver
Jennifer and Benjamin Bailey have four children: three daughters and their youngest — a son, 7-year-old Connor.
Though the youngest, he has managed to teach his family the most life lessons.
This is his story.
The Oneida, Madison County, resident was diagnosed at 19 months old with profound autism.
According to a report released in 2023 by the Centers for Disease Control and Prevention (based on data collected from 2000-16), 26.7% of people diagnosed on the autism spectrum have profound autism.
His mom said that from the very beginning, the family was able to jump feet first into the pool to find resources for Connor.
Figuring things out
When he was formally diagnosed, the family had a collective, “Oh, this is who he is now,” Jennifer remembered.
In the very beginning, as the family was acclimating, the mother said habilitative services were key in helping her family enter Connor’s world and help him connect with his environment at his pace, instead of the reverse where he would be tasked to constantly try to fit into the world around him.
But the journey to that mental point started several months prior, as questions about his development as an infant began to rise.
“When he was around 9 months old, his babbling stopped,” she said.
Then there were the missed developmental benchmarks — his eye contact while being fed lessened and he needed more support to sit up.
Along the road to getting diagnosed, doctors briefly thought he might have a hearing deficit. Testing ruled that out. A few months after that, doctors assessed all the data and made the diagnosis.
Then, the real work for the family began.
“We had to figure out a way to make the world ‘less’ so he could engage,” she said. “Today is just so demanding.”
Part of that came in the form of learning that her son had a love of the outdoors. Wind and water being tactile sensory engagements that he craves. So now, splash parks, lakes, beaches, hikes all factor in his world where he can relax and be himself. She can visibly see Connor’s shoulders relax when watching waves splash on a lake or walking on a path through the woods.
Along the way, the family learned to slow down, To take respite and retreat opportunities. To look at the world around them as a unit.
The current day to day
“Connor’s never still,” his mother said. “He’s often jumping, moving, stimming.”
The challenge is getting his body to coordinate with what his mind wants to do, she added.
He is non speaking —which is different from being non verbal, she pointed out — and attends Willard Prior Elementary School in a specialized classroom. He can say words with an effort, his mother said. But he largely uses an augmentative and alternative communication (AAC) unit to converse.
Every week, he receives at least 25 hours of applied behavior analysis therapy plus occupational speech and physical therapy and adapted physical education.
Among services, through the New York State Office for People With Developmental Disabilities, he attends respite at the ARC of Madison Cortland’s kids club, attended a week-long camp at ARISE at the Farm in Chittenango last summer and engages in programming through Families FIRST, an organization which provides person-centered support for people living with disabilities.
He also regularly has appointments for neurology, a developmental pediatrician, pulmonary, geneticist, infectious disease, an ear, nose and throat specialist, an optometrist — the list can go on.
The Baileys also work full time. Jennifer is an occupational therapist and Benjamin works remotely for The Hartford.
But the family makes their busy schedule work.
“That’s our non stop lives that we never anticipated. Profound autism has changed everything and it’s certainly been an adjustment. Our Connor was diagnosed at 19 months old and I could name off all his milestones, but what the paperwork won’t say is how he’s changed us from the inside out. We faced questions of faith, justice and what love really meant. Connor has an incredible capacity for joy. He is a sensory seeker and the experiences that bring him joy are so full of light and depths of belly laughter, you can’t help but be moved,” she said.
“It is also heartbreaking to watch him crumble under the weight of a lack of ability to communicate. His ability and intelligence in navigating electronic devices, picking up on vocabulary and even to spell and read are incredible. Functional communication, daily life skills and sensory regulation are challenges that wreak havoc on his life daily. We watch, pray and support as best we can to help him to grow through it,” she added.
Growth
Over the years the family has grown right along with Connor.
“His sisters’ compassion has grown. Their awareness has grown. As a family, we’ve slowed down and take in more. We’re the lucky ones, but you don’t process that unless you slow down,” she said.
She added that her son — who is on permanent disability — will need support for the rest of his life. So, while families need to live in the moment and the day-to-day to help family members with autism achieve goals, there are always long-range plans that need consideration and work, she said.
Her advice to parents of children who receive a diagnosis: “Remember to love your kid where they are at. And it’s the hardships [in life] that help reveal the beauty underneath.
“The thing with autism is you have to expect the unexpected and find those special moments to enjoy.”
Like the splashing of waves. The wind between your fingers. Or the sun on your face. And sharing it together with your family.
Autism Walk Slated for April 26
The Bailey family will host an autism walk at 10 a.m., April 26. at Higinbotham Park, 116 Broad St. in Oneida. The city of Oneida is co-sponsoring.
Get more details here: https://tinyurl.com/2fahfn86