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Sunday, December 22, 2013
Friday, December 20, 2013
Sad mama bear
By Sue Robins
In the health system, I’m an advocate for Aaron, my son with
Down syndrome. I’m prepared, articulate, and know how to persistently and
politely lobby for changes in his care.
But usher me into the school conference room for a
meeting with principals and teachers, and I turn into a blubbering mash-up of
tears and rage. I’m a mama bear, to be sure, but a shrill weepy one. My
rational and eloquent advocacy with...
Monday, December 16, 2013
Let's find the missing 'family-centred' pieces
By Jacqui Getfield
Recently, I attended two events about family-centred care. I learned a lot but came away with conflicting emotions. I was intrigued and happy yet also very concerned. The conferences confirmed a suspicion that I’ve held since I first received my children’s diagnosis: professionals tend to ignore the influence of a family’s culture, structure and finances on its ability to care for a child with disabilities. Most...
Monday, December 9, 2013
Where is she now?
Two weeks before the end of her Grade 10 school year, Irene Tran—a bubbly
teenager who excelled academically and was an accomplished pianist—was rushed
to hospital with a ruptured brain aneurysm.
When she came to Holland Bloorview for rehab, Irene was paralyzed on the right
side, struggled to speak and had lost the ability to read, write and do math.
Irene’s dreams of going to university were derailed. She couldn’t return
to the academic...
Saturday, December 7, 2013
Friday, December 6, 2013
How stories humanize us
Historically BLOOM has been the voice of parents
raising children with disabilities.
But there’s value—to parents and professionals—when clinicians
share stories about the emotional side of their work in children’s rehab.
My “aha” moment came when listening to
an occupational therapist describe how anxiety-provoking it was for her to tell parents that
their child needed to be referred for a wheelchair. Often, the...
Wednesday, December 4, 2013
A voice for Andrew
Holly Zhuang's brother Andrew (above left) died in September. Holly spoke for him and 300,000 Ontario children with special needs at a meeting held Tuesday by the Provincial Advocate for Children and Youth to explore ways to make youth with disabilities better seen and heard.
Holly described how Andrew's severe cerebral palsy gave him "little to no control" over his body, yet he developed a unique...
This is what beauty looks like
To celebrate the International Day of Persons with Disabilities yesterday, store windows in Zurich shops were filled with mannequins designed to reflect the beauty of real people with disabilities. Watch the process of creating the mannequins here. ...
Tuesday, December 3, 2013
'Disabilities' day and discrimination
It's the International Day of Persons with Disabilities.
If you're looking for an uplifting post, please see our piece yesterday about special-needs adoption.
At the moment, I am struggling with stories about discrimination against people with disabilities in accessing health care.
This piece is about a five-month-old baby with a heart defect okayed for a heart transplant, only to have this decision...
Monday, December 2, 2013
'You are going to be Dads'
At a recent BLOOM event I met a new dad, Rob Foslett. Rob's face lit up when he told me that he and his partner had recently adopted a young boy with autism. Of course I wanted to see pictures, so the next day Rob e-mailed me some. "It's been a great 39 days since Owen came to live with us and he has made our lives so much better!" he wrote. Of course I wanted to know the WHOLE story, so Rob wrote it and here it is! Louise
By...
Tuesday, November 26, 2013
A lesson in love
Donna Kirk is the author of Finding
Matthew: A Child with Brain Damage, A Young Man with Mental Illness, A Son and
Brother with Extraordinary Spirit. Here she shares
the challenges and joys in her family's remarkable journey to give Matthew
(above left with his sister Kelley) a good life. Thank you Donna! Louise
By Donna Kirk
“Your son is a vegetable with a heartbeat.”
The head pediatrician at the hospital dismissed our first...
Thursday, November 21, 2013
And the truth shall set you free
I remember when my son was still a baby, a psychiatrist told me that I needed to play a "PR role" in how I introduced him to others. He said people would make judgments and assumptions about my son's genetic condition, so I had to script a story that played up all of his strengths and minimized any impacts the syndrome might have on his health or development.
This didn't seem like a bad idea, initially. I was...
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