Marie Downey searches in her bag for a spreadsheet.
“I have to be very organized,” she says.
She’s the director of the play “Gut Girls,” as well as a full-time university student, a pastor, a literary instructor, and a mother of three.
You can find her in James Dunn Hall on the St Thomas University campus tutoring and counselling classmates in her free time. You would never guess that Marie, a radiant woman who loves sketching and oil painting, is part of a family filled with disabilities. Her daughter, two sons, and husband all suffer from forms of autism.
“I’ve seen my daughter put her fist through a wall,” says Downey, putting both hands on the table, leaning forward.
The pastor of Canada’s first congregation for families with special needs says it takes more than just organizing skills to live her life.
“It’s really hard sometimes.”
•••
Her family ran a gas station and restaurant. Her parents divorced when she was 12, and her mother left with her sister and told Marie she didn’t love her.
“My mom didn’t want me.”
She and her father were on their own. She would get up at six before school to turn on the grill, rush home after class and work at the restaurant until 10. Unable to maintain the business by themselves, they sold it two years later and moved into a trailer.
“It was crowded, and hard on my dad.”
“I was home alone all the time,” she says. She would turn on the TV and watch M.A.S.H because she “wanted a voice.”
Marie got involved in theatre in Grade 9. It became an escape. Her other escape was church. At 16, she attended a friend’s birthday party and met kids from a youth group. Soon after, she started attending church regularly, although it was a 45-minute drive from her home in Picton, Ont.
“A couple of times I had to sleep at the church.”
She attended Bethany Bible College and graduated in 1986, knowing that God wanted her to be a pastor.
“I was the only female who graduated in my ministerial class of 200 people…that’s how clear it was.”
Marie met her husband, Russ, while attending Bethany; they got married three years later.
A year later, they had Diane.
•••
Marie’s daughter, Diane, was diagnosed with Asperger’s when she was 14.
“She was really, really hyper, way too active for a girl.”
Diane always had trouble with social relationships. There were times when Marie could not understand why her child did not have any friends.
Now 25 and living at home, Diane tested genius level as a child before entering kindergarten. She programmed their Commodore 64 computer at three.
“She taught the teacher how to use the computer.”
For the first six years of Diane’s life, Russ was away in the U.S. army, leaving her to raise their child. He served in the Persian Gulf War.
“That was scary…he would come home and leave for weeks at a time.”
After Russ was through with the military, the Downey family moved to Beaverdam, N.B, where she had her boys 1996.
Andy and Michael were both diagnosed with autism.
“Andy broke my wrist before. He was three,” says Diane.
Andy will only eat three fruits and vegetables; raw broccoli, baby carrot sticks and granny smith apples.
“And that’s it – and to make it even more fun, Mike’s a different apple and Diane’s a different apple.”
She says when the children were younger, she could not leave their side.
“Andy tried to escape from the house. The school lost him!”
Diane was bullied in her senior year and had to switch schools.
One of the hardest things Marie has to deal with are “meltdowns.” When children with autism lose control, there’s nothing you can do.
Marie says you can’t touch them or hug them, and that “language completely evaporates.”
Each child melts down differently.
“Andy just resorts to screaming…the more you try to help, the worst you can make it.”
“She [Diane] throws furniture, all my kids do.”
Marie says she clears out and tell them she loves them.
The meltdowns still happen, just not as frequently.
“Once you’ve met once child with autism, you’ve met one child with autism. No two are alike.”
•••
Marie is a pastor for Family Circle church, a church for people with special needs. It’s the first of its kind in Canada, and possibly, the States.
“It starts at 2 p.m.” she says, and calls it “organized chaos.”
“Mornings don’t work well for kids with special needs,” she says. “You have to rush.”
The mother of three says her relationship with God gives her strength and patience. Organization is another key.
“Everything needs to be scheduled. We have a calendar where I write everything down from appointments, school holidays, exams, bill due dates, pay dates, family nights, to our rehearsals for the play, and it is color-coded.”
Diane also helps with the boys. She watches them whenever Downey needs extra rest.
“She has a unique understanding of how they think and work.”
Still, it’s hard when something hits “out of the blue.”
A sewer backup before Christmas caused the Downey family to stay in a motel for four days; she estimates the loss at $23,000.
Another time, she was in hospital for two weeks after major surgery.
Despite all the obstacles and her busy lifestyle, Marie is on the Dean’s list at St Thomas and plans on taking a bachelor’s of education next year. She wants to be an elementary school teacher.
“I’m the stabilizing force in my family,” she says. “Sometimes when you go through this every day of your life, you don’t truly realize that what you are doing is any different than what other people do.”
