Cathy Dobson
A unique home in Sarnia’s north end where medically fragile residents enjoy exceptional quality of life is about to nearly double in size.
Standing Oaks is the name of the grey brick bungalow that will soon add four bedrooms, bringing total capacity to nine residents, says Dave Ashdown, a board member at Community Concerns for the Medically Fragile (CCMF).
He was part of the original group of parents who advocated for 15 years for a residence to house their medically fragile children.
The medically fragile require 24-hour care, a heavy demand on families who frequently burn out, said Ashdown. His son Nick is one of five current Standing Oaks residents.
“The community needs Standing Oaks so much because parents get to a point they just can’t do it anymore. We had Nick at home for 22 years and you just hit the proverbial brick wall,” Ashdown said.
Before the home opened in 2004, burned out local families had no choice but to put their children in a hospital or long-term care facility.
“We took Nick to continuing care at the hospital and it just didn’t work,” Ashdown said. “Understandably, he had to fit into the hospital’s schedule.
“The hospital system is not where the medically fragile should live. We brought Nick home after three weeks.”
Nick Ashdown was born with cerebral palsy. He is a quadriplegic, has epileptic seizures, intermittent eyesight, can utter only one word (“yeah”) and requires a gastrostomy tube for eating.
“The doctors said that at best he’d see 15 or 16,” his father said. “He’s now 37-years-old and doing very well.
“We are so lucky to have Standing Oaks. I can’t describe the feeling I get when I phone up and can hear my son in the background playing a game and laughing.”
Each resident of Standing Oaks has a bright and spacious bedroom decorated by their families.
The walls of Nick Ashdown’s room are covered in artwork by his brother and grandmother, as well as a signed photograph of Leonard Cohen, Nick’s favourite singer-songwriter.
Until his death in 2016, Cohen was a regular contributor to the CCMF’s annual Celebrities on Canvas fundraiser.
One of Nick’s favourite rooms in the house is the Snoezelen room where residents are comforted by the stimulation of tiny lights and calming music. Music is everywhere at Standing Oaks and, each Sunday, Ashdown arrives with his guitar to entertain the residents.
Family visits, even sleepovers, are always accommodated. Parties and barbecues are frequent with family and staff joining in.
Standing Oaks was built by a collaboration of CCMF, March of Dimes Canada, the provincial government, and the Sarnia Rotary Club, which donated an acre of land for the house near the corner of Michigan and Murphy.
March of Dimes Canada operates the home and provides six staff who see to the residents’ care around-the-clock.
About four years ago, the organization recognized a growing waiting list for Standing Oaks and began making plans for the expansion. Work will start in August and last about five months.
Unfortunately, even with the expansion, Standing Oaks won’t be large enough to wipe out the waiting list in Sarnia, said Ashdown.
There are currently nine local families with a medically fragile child who needs residential care and many more that will need it in a few years.
Government money is paying the bulk of the expansion’s capital cost and CCMF is providing what it can.
CCMF is a small, grassroots group that works hard at fundraising to provide improvements, a van and arts programs at Standing Oaks, as well as specialized equipment for medically fragile still being cared for by family.
Recently, Lowes of Sarnia fundraised $6,800 and donated it to CCMF for materials that will be used for the expansion.
“We pay for upgrades that make the house feel more like home,” said Ashdown. “Whereas the ministry would put tile throughout the house, we paid for laminate wood floors to warm up the living room.
“It definitely doesn’t feel like an institution.”