Kanata Lakes woman launches agency to help autistic - Suzanne Jacobson inspired by grandsons' struggle
June 11, 2009 BY Cheryl Brink
Suzanne Jacobson cuddles with her oldest grandson, Alexander. He was diagnosed with autism before his third birthday, and inspired his grandmother to open QuickStart to help others. Submitted photo
"We want to level the playing field, and have (services) available to everyone."
Suzanne Jacobson hadn't heard her grandson's voice by the time he was two years old, and she was worried.
Alexander was missing other developmental milestones, so his parents - Suzanne's daughter Jennifer and her husband David - took him to a doctor. The physician told them all boys mature differently and the problems were nothing to be concerned about.
But during a play group session, an infant developer saw Alexander and referred him to the Ottawa Children's Treatment Centre for an assessment.
Ten months later, he was diagnosed with autism.
"It was very, very stressful," said Jacobson. "I didn't even want to research autism because it was such a frightening word."
Eventually, the Kanata Lakes woman did look it up online, and with her husband, David, decided to pay for speech therapy for Alexander, even before his diagnosis.
The waiting list for government-funded intensive therapy was at least two years and required children to meet very specific criteria. Jacobson realized some children were falling through the cracks in the meantime, especially when unaware doctors dismissed autistic symptoms.
"That's the worst advice you could get - you need early intervention," she said.
Though Jacobson and her husband were able to pay for therapy, she knew not everyone could afford private care when it is most needed: between ages one and six. Treatment for autistic children can cost around $50,000 each year.
To solve at least part of the problem, Jacobson created QuickStart, an agency that connects kids to therapy even before diagnosis.
"The long-term goal is to get rid of the waiting list completely as much as possible," she said.
Last year, Jacobson met with directors at OCTC about her idea.
"We put together a proposal," she said. "I said, 'If I can raise the money, will you do this?' They said yes."
By October 2008, Jacobson had gathered $46,000 from golf tournaments and donations to launch QuickStart's getting started services. She is also personally invested in the program, overseeing daily operations for free and covering most of the administrative costs. She said of the money raised, 90 per cent goes directly to paying salaries for staff -the OCTC's speech therapists, social workers and others - so clients don't have any costs.
"We want to level the playing field, and have (services) available to everyone," said Jacobson. "It's not fair that only people with money can have this."
The OCTC has already hired three people for QuickStart, which is based at the centre in Ottawa's east end but has satellite locations on Merivale Road and in Kanata. By next month, the clinics will be open two days each week instead of one.
"It's pretty exciting," said Jacobson. "We have some great support."
She said the need is growing as roughly one in 100 children is diagnosed with autism in Canada.
Her goal is to have nine staff members devoted to QuickStart, have the centers open at least three days a week and connect families to services within two weeks of identifying their need. The associated cost, however, is close to $500,000, so there is more work to do.
But what QuickStart has accomplished so far has made a huge difference, said OCTC program administrator Bonnie Grady.
"Our waiting list for starting services has gone from a year-long wait to roughly a couple of months by the time a family gets through intake and into our getting started services," she said.
Jacobson said not all children who use the program are diagnosed with autism, but having something to do while waiting for answers is still important.
"It gives them something to start working on," agreed Grady about the therapy, group sessions and other resources QuickStart offers. "That's really key in giving parents control over what they see in their child's life."
Jacobson said awareness is crucial, as some families have no idea where to begin and enroll in very expensive and sometimes unnecessary treatment.
Grady said the OCTC was developing a pilot project similar to QuickStart before Jacobson approached them with her idea, so it was an easy decision to support her.
"We couldn't do it without her," she said. "And she couldn't do it without us. It's a great partnership.
"She's just really enthusiastic and positive and really easy to work with," added Grady. "She's very committed to the issues."
"It's very rewarding work to do," said Jacobson, "to see it coming together so quickly and know you're making a difference."
As Jacobson works tireless to raise money and run QuickStart - sometimes spending 60 hours a week on the job - she also makes time for her grandsons, Alexander and his brother Nathan.
"I'm a very hands-on grandmother," said Jacobson, who was a stay-at-home mom when her three children were young. "It's not unusual for me to spend upwards of 20 hours a week with the boys."
Because siblings have a higher chance of both developing autism, Nathan was tested early and often. He was diagnosed just a few months ago.
"I think the advantage was we knew what to look for," Jacobson said about Nathan's diagnosis. "Even though it's suspected, it's still very hard to hear the words."
He is now two years old, and Alexander is five.
Since there are no physical differences between her grandsons and other boys without the developmental disability, Jacobson said it's often difficult to explain to other parents why they act much younger than their age.
"They teach you a lot. They teach you patience and teach you not to judge," she said of the brothers.
Because of his early diagnosis and help from QuickStart, Nathan is already receiving treatment as he waits for government-provided therapy, which is about 25 hours per week.
Alexander finally made it into the program and has made huge strides in his development. He is teaching himself to read, loves music and is playing on a soccer team this summer.
"He has a lot of strengths in him," said Jacobson. "He has lots of challenges as well. But he can count to 30, he knows his months of the year and days of the week."
His grandmother most enjoys hearing him speak or sing along to his favourites on the radio - he had no language at all until he was more than three years old.
"It's pretty exciting to hear his voice," she said.
For more information visit www.quickstartautism.com.