It looks like 2016 may be one of Joanne Picard’s best years yet. A senior at Holy Trinity Catholic High School in Edmonton, Alberta, Joanne is so-o-o ready to experience a new sort of independence when she fulfills plans to enroll at a Canadian university as a political science major later this year. “I’m obsessed with democracy,” she says.
As Joanne (you can call her Jo) looks forward with optimism, she gives the sense that nothing can stop her from enjoying the present, moment by moment.
“So far, senior year has been pretty awesome,” she says. Jo’s vivaciousness and already independent spirit shine brightly despite the disabilities and health complications associated with Rett syndrome that are part of her life. Though she is non-verbal, she is articulate and unafraid to express herself. Jo uses an eye-controlled Tobii Dynavox I-15+ with Sono Scribe language software to communicate. She uses another Tobii Dynavox device, the PCEye Go, to control her laptop and tablet computers through the same eye-gaze techniques.
Signs of Rett syndrome surfaced in Jo as a toddler. Her muscle tone and mobility declined. The condition interrupted her speech development at two years old. Through this regression, others saw her as a smart and social child who wanted to explore, learn and talk about things. The hardest part was that she knew what it was like to talk, but couldn’t. Jo eventually developed a strong blink for “yes” and purposefully looked away when she meant “no” — unaided communication techniques that continue to serve her well today. Her earliest augmentative and alternative communication system consisted of precisely labeled digital photographs of her toys, musical instruments, and all the things she could possibly need or want each day — down her favorite lip gloss. Making constant eye contact with the images, Jo held detailed conversations with the people around her. Her mom, Simone Chalifoux, said there were literally thousands of photos in the collection.
“We didn’t want to restrain her ability to communicate to what we thought she should say.”
During elementary school, Jo used a variety of AAC products including a device with spoken language recorded by her peers. At the time, she could pivot her wrists and with support, isolate her index finger, so she selected vocabulary by direct touch. As purposeful hand movement gradually became more challenging for her, Jo tried a device she could access with her eyes. They decided to wait for the technology to advance and have no regrets. Jo got the PCEye Go in the fall of 2014 and the I-15+ a year later. She took quickly to the devices. Simone and her husband Pierre, both schoolteachers, appreciate that they can more fully enjoy Jo’s company because they don’t have to put as much effort into their conversations as before.
I can't wait to exercise the whole university experience, from frat parties, to meeting new people from all over the world, to arguing with my professors, to challenging myself in every way to learn and become a better person.
Did we mention that Jo is fluent in English and French? Her family speaks both languages at home. Jo switches between the English and French users on her I-15+ at home and everywhere she goes.
When Jo needs to stay home for extended periods of time for medical reasons, she attends her classes via Skype or Facetime, and her school aide assists her at home. Yet Jo gets out and about quite a bit. Jo is especially pleased that technology lets her be a voice for others. She is a member of the City of Edmonton Youth Council and its social equity subcommittee, as well as a founding member of the Diversity Club at her school. Together, the roles provide plenty of opportunities to advocate for equality and fairness for minority students, and to help raise awareness of sexual orientations and gender identity policies.
Jo herself is a renaissance student of sorts, thriving academically while pursuing social causes close to her heart. Meanwhile, she loves the cosmetology classes at school that bring out another facet of her creativity. Working around limitations in using her hands, she gives step-by-step instructions for beauty-related procedures through her Tobii Dynavox device to show what she knows.
One of Jo’s favorite helpers and companions is Pépite, a trained seizure-alert dog whose French name means “chip” — as in chocolate chip. Like the confection, the tiny Havanese is easy to love. “She is pretty freaking awesome,” Jo said. Pépite can sense when Jo is unwell, keep her comfortable and alert the people around her.
Jo, no doubt, likes to keep others happy while having fun. Simone says she is a wonderful big sister to Olivia, 10, who loves when they play cards, board games, or even Xbox together. At Olivia’s request, Jo went to see “Alvin and the Chipmunks: The Road Chip” with their whole family at the holidays.
For movie dates with her high school friends, Jo is more likely to choose a chick flick like “Sisters” and maybe sneak in a side trip for shopping or coffee. An avid wrestling and Olympic bobsledding fan, Jo may take to the slopes in her sit ski while winter is here.
Spring and summer are bound to bring pre- and post-graduation celebrations. Jo shared some thoughts on what comes next.
“I can't wait to exercise the whole university experience,” she said, “from frat parties, to meeting new people from all over the world, to arguing with my professors, to challenging myself in every way to learn and become a better person.”