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Finding Mika's Voice: local family raises funds to take cutting-edge training for autism
Full-size, mounted canvas prints of this Stéphanie Gauvin original are available for only $100 to help support Geneviève Fortin's efforts to attend a unique and intensive course in New York to help her daughter Mika progress with her autism.
"Mika is amazing," Fortin said. "She loves music, loves people, loves being outside, loves movement in general." Gauvin's painting captures these loves in a moment Mika shared with her father and that Fortin photographed.
But seven-year-old Mika's autism makes her prone to behaviours such as hand flapping, wandering off, and repetitive rituals. She faces difficulties in areas such as motor control, speech, and language.
Fortin and her husband tried many of the therapies available in Canada for autistic children under the general moniker of "ABA"—applied behavioural analysis. ABA therapies aim to mould autistic children to more socially functional and acceptable behaviours, and in fact are the only approaches in Canada on which families can spend government funding.
Fortin acknowledges that ABA may work for some children, but she found, in Mika's case, it didn't help at all.
"Ever since we found out about her autism when she was about two, we tried to do the best that we could to help her be with us in our world," Fortin said, emphasizing "our world." She explained, "What we've experienced and learned [with various ABAs] is that you don't go by your child's motivations, you go by what you want. For example, if you want your child to sit at the table, when they do that you reward them with food."
But Fortin’s entire approach towards Mika and autism changed after she read books from the Son-Rise Program at the Options Institute in New York and took a short course with them. She describes the approach broadly as "respecting Mika's behaviours and respecting who she is."
To illustrate the philosophical difference between the Son-Rise program and ABA therapies, Son-Rise has put out a series of humourous videos reminiscent of Apple's famous Mac versus PC ads.
"By changing our attitude—mine, Dad's, her teachers'—that's enabled us to make progress,” Fortin said. “Instead of trying to understand her behaviours so we can eliminate them, instead of imposing my beliefs of what things should be, I go with what she does, what she likes, and what she's motivated by. I just take all of her for who she is and love all of her," Fortin said.
(Fortin laughed as she pointed out that Mika's younger sister, five-year-old Ellie, didn't make the switch: "She had the right attitude to start with. It's when we grow up and become full of beliefs and opinions that these can get in the way.”)
Fortin now "goes to her world," joining Mika's hand flapping if she is hand flapping, joining her repetitious behaviours if that's what Mika is doing, "digging to China in the sand like there's no tomorrow," if that's what it takes.
"If Mika's playing with blocks and just moving blocks around in a basket over and over and over again," she said, "then that's what I'm going to be doing, rather than taking away the blocks and saying 'no, that's not how we play with blocks.'"
"We want to connect with her," Mika said. "If we find a song she likes, we sing it a million times together, perhaps in different tones or different rhythms, and make that her learning activity."
If this sounds simple, it's not. The difficult part is applying the outlook of acceptance to the many different situations that arise in real life, all while upholding the "Three E's" of energy, excitement, and enthusiasm.
"You have to be like a magic wind up toy," Fortin explained. “You don't want to compete with toys, you want to be the toy." That's where intensive training at the institute comes in.
"Son-Rise have come up with a million and one strategies to use with children," Fortin said. The training itself doesn't work on children so much as it does on parents, giving them tools they'll need.
"The actual therapy happens at home," Fortin said. The Son-Rise approach really depends on involved parents—though few will likely have gone to the lengths that Fortin already did, for example going to Selkirk College for a program in Special Ed "to understand the whole situation better."
There's a deep social curriculum and developmental model from Son-Rise that parents learn so they can "recognize green lights" that the child is ready to be challenged "to take the step up," Fortin said. Success hinges on bonding, acceptance, excitement, play room energy, child-motivated games, eye contact and other ways of building a loving, trusting, and fun relationship.
The fact is, Fortin said, the Son-Rise approach works.
The family that created Son-Rise did so in 1978 to help their autistic son. He recovered completely and now teaches some of their program.
"There are hundreds and hundreds of success stories," Fortin said. "People went there for training or read their book, did the program at home, and took their child who may have been hand flapping, non-verbal, or didn't want to be touched, back to the regular system [i.e. school] without assistance."
"Son-Rise has now been recognized as the number one therapy at the AutismOne conference," Fortin said.
The last AutismOne conference offered free day care while parents went to the conference, so Son-Rise came with a team of child facilitators schooled in the ways of the Three E's, and took a limited number of children with autism under their wings.
"They gave questionnaires to parents before, during, after the conference," Fortin said, "and 100 per cent of parents saw a noticeable difference in their children in just three days."
“[Other Son-Rise] children have completely lost all signs of their autism," Fortin said, though she will not say that's likely for her daughter, who exhibits an unusual combination of autistic traits. "I have hopes, but wherever we go with this, as long as we can help her right now, I'm happy with that," she said.
"We've seen amazing progress already," Fortin said. At first Mika had no way of conveying what she wanted to eat, for example, but now she can, and they're working towards a goal of 50 words in her vocabulary.
Mika homeschools and will soon be a student of the SelfDesign K-9 Learning Community. Fortin was clearly excited about this development: "Son-Rise is totally compatible with SelfDesign," she said. "[Son-Rise] is endorsed and respected." The program will give Fortin access to a Special Education teacher and government funding to hire a child facilitator.
Fortin is still on the lookout for such a facilitator, and welcomes all applications from people who can apply the Three Es and "want to be here."
In the meantime, Fortin hopes this current fundraiser will help send her off to New York for the intensive Son-Rise program. She points out that Son-Rise is not-for-profit, and that the last time she attended a course she raised half the money from a party at the Miners' Hall, but the other half was covered by private donors who give to the Options Institute.
"People with a lot of money bring children to do the program, and they see the amazing change and want to give back," Fortin explained.
Fortin also encourages anybody who wants to share experiences about loved-ones with autism in their families, or who have questions about Son-Rise, to contact her.
"I always want to connect with parents," Fortin said. "Some people find it hard to connect over something that is so heavy. I'm trying to laugh about it more, about all the weird things Mika does. It is weird, let's be open about that. I have amazing friends that help me on this topic, but they don't have the same experience."
Geneviève Fortin is taking pre-orders on Stéphanie Gauvin's prints until Aug. 20 and can be reached by phone (250-362-5214) or on Facebook.