No tears for this child with cerebral palsy
When Jolane was looking for a part-time nanny for her daughter, she was shocked by one candidate’s confession.
After explaining that Alessandra had cerebral palsy (CP) and mentioning her challenges with mobility, the nanny admitted she couldn’t possibly take care of her daughter.
Why? Because she would be “crying all the time” at the sight of this poor little girl with a disability.
What’s ironic is that if this woman ever met Alessandra in person, she’d quickly realize this child is as happy, active and as full of life as a little kid can be.
This is just one of the many scenarios (and stereotypes) that led Jolane to sign up Alessandra as a Holland Bloorview Ambassador, and a perfect example of why days like World Cerebral Palsy Day are so important to raise awareness.
Happiness shouldn’t be a surprise
Jolane wants others to understand that the term “cerebral palsy” doesn’t mean sad or tragic. You can have cerebral palsy and still wake up each day smiling. Alessandra is living proof.
“People sometimes say, ‘She’s so happy!’ like they’re surprised, as if she shouldn’t be happy because she has a disability,” said Jolane.
Jolane also wants others to know that a diagnosis of cerebral palsy affects every child in a different way – there’s a wide spectrum.
Cerebral palsy affects muscle tone, movement, and motor skills. It impacts the body's ability to move in a coordinated and purposeful way. It can range from weakness in one hand, to an almost complete lack of voluntary movement.
Some kids with CP may use wheelchairs, walkers or canes to get around. Others may be able to walk by themselves. CP can also affect other body functions that involve motor skills and muscles, like breathing, bladder and bowel control, eating, and talking.
Now four years old, Alessandra’s cerebral palsy mainly affects her legs. She uses a walker and AFOs (Ankle Foot Orthosis) to get around, as well as a wheelchair when she takes the bus to school. Above the waist she has full mobility and her speech is unaffected.
She’s bright, outgoing, chatty, loves math, is a wizard at jig saw puzzles and loves nothing more than playing with her six-year-old sister, Mikaela.
“She’s fearless…she wants to do everything, and experience everything,” said Jolane.
Jolane and Alessandra have been coming to Holland Bloorview for the past 18 months, primarily for her to attend kindergarten at the Bloorview School Authority and for physiotherapy at the hospital.
“There’s an abundance of great resources and information here that we can leverage as she grows up,” said Jolane. “Once she’s a little older, I plan to get her into some of the recreational programs.”
One day at a time
In the meantime, Jolane knows the challenges will soon change, especially as Alessandra becomes more self-aware.
“She’s asking me, ‘Why can’t I walk?’ What’s the right terminology so that she doesn’t feel like there’s something wrong with her? That’s something I have to figure out.”
No doubt with the support of Holland Bloorview, Jolane will find the right words and Alessandra will wake up the next day smiling and happy.