Swap-meet fundraiser to help New West couple's autistic son
Mylo McMordie started crying when he was five weeks old and pretty much didn't stop for more than six months.
Doctors reassured his parents, Rogan McMordie and Kate Walker, it was just colic. They just had to wait it out.
But the crying didn't stop, and no answer to their questions seemed satisfactory.
Then during a visit to a pediatrician when Mylo was 11 months old the doctor asked a bunch of questions.
"Does he point?"
"Does he respond to his name?"
"Does he babble?"
No, no, and no.
Soon, the doctor informed them their son was likely autistic.
"We came away from that appointment shell-shocked," says Walker in her family's Downtown New Westminster apartment.
Walker and McMordie had to wait to find out if the pediatrician was correct. Children cannot be tested for autism until they are 18 months old. And there's an 18 to 24-month waiting list once they're eligible. Walker's research indicated the earlier a child is diagnosed and begins interventions, the better.
So with financial help from their families they paid $3,000 for private testing.
"It was a mixture of shock and fear, mixed with a little bit of relief," says Walker of the testing. "That validated it wasn't in our head."
Walker's initial instinct was to research the heck out of it. McMordie concedes he buried his head in the sand.
"I didn't deal with it quite as well," he says.
But when she burnt out from researching and caring for Mylo, he resurfaced and took over.
"Lots of other things become less important than before," says McMordie
To cope, McMordie works from home as a systems administrator while Walker has quit her job as a realtor to take care of Mylo.
The province funds the most widely accepted therapy called applied behaviour analysis (ABA), previously known as behaviour modification. Mylo's parents believe he has benefited from ABA, but not enough. Now at age 3 1/2, he still can't talk and remains locked in his own little world.
"It wasn't working for us. He wasn't enjoying himself, we weren't enjoying it," says Walker. "He wasn't making the progress we felt he should."
So Walker went back to doing research. She came across Son-Rise, a home-based program developed by a couple in Massachusetts in the 1970s. It is a program that has heavy parent and child involvement.
The program believes eye contact and accepting the child without judgment allows them to teach themselves to interact with others. But because it's so home based there's a lack of scientific studies to back it up.
It's hard to say one treatment is the answer, say Walker and McMordie, but they feel Son-Rise is the right choice for Mylo.
"Its principles are more in line with how we live as parents," says Walker. "This is the path that best suits us, and best suits Mylo, and at this stage we're going to do everything we can to make this happen."
Parents are trained during three workshops at The Option Institute in Sheffield, Mass. The first costs about $4,000 for Walker to attend. They've already raised more than $6,000 on the youcaring.com website (to contribute enter "Help Mylo find his voice" in the search box). They now have a goal of $10,000 so McMordie can go to the second workshop.
The institute prefers both parents attend all three workshops. That's not practical financially or logistically, say Walker and McMordie. Mylo should go to the third workshop. But Walker can't fathom being able to take him on a cross-continental trip. Nor can she fathom raising the $20,000 to make it happen.
Walker has received a lot of support from a Facebook site she set up for British Columbia parents of autistic children. The same goes for the New West Moms group. One of those mothers, Natalie Lawy, helped to organize a swap meet to help them meet their fundraising goal.
"I see Kate giving everything to Mylo. She's made so many changes over the years—changing her whole lifestyle, she's given up her work. It's obviously a very overwhelming job. She needs help," says Lawy.
The swap meet will feature kids clothes, toys and equipment. It will be held on the second floor at River Market on Sunday, April 27, from 3 to 6 p.m.
Mylo's artwork is also available for sale at mylojay.imgur.com.