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Wednesday, October 31, 2012
Monday, October 29, 2012
Answering your question on withdrawal of fluids in newborn
On Friday a parent posted this question on the BLOOM blog:
"Is it routine to withdraw fluids and nutrition from infants in the NICU? That is what we were offered for our son in hospital after we removed the ventilator and put a DNR on his chart and waited for him to die. He didn't die. He didn't need a g-tube, he was able to breastfeed and get enough nutrition for himself yet it was offered to us to just stop feeding him orally, give him morphine...
Sunday, October 28, 2012
Thursday, October 25, 2012
A toileting taboo: Kids and incontinence
Pee and poop. We all do it. But what if you couldn’t control when you ‘went?’
What if catheters, timed toilet trips, medication, diapers and sometimes surgery couldn’t guarantee that you wouldn’t have an accident?
How would you keep it a secret?
How would other kids treat you if they found out?
Urinary incontinence and how it impacts children socially was the focus of a qualitative Holland Bloorview study of 11 youth with spina...
Chat with us at Parent Voices
Come visit us at Parent Voices at Holland Bloorview on Facebook!
This is a place for parents of children with disabilities to ask questions, share practical information, discuss topics and support each other.
Where useful, we’ll offer expert advice on how to navigate the system and what programs and services are available at Holland Bloorview and beyond. We’ll also let you know about parenting resources.
Read our About section to...
Special Olympian fires back at Coulter
Watch this interview with John Franklin Stevens (left), a Special Olympian who has Down syndrome. Then read his Open letter to Ann Coulter....
Wednesday, October 24, 2012
Don't show your ignorance Ann
My British dad used to use that phrase: "Don't show your ignorance."
And in the context of Ann Coulter (who tweeted the above Monday during the final debate in the U.S. presidential election) it fits like a glove.
I'm so glad I don't live in a country where ignorance and hatred are accepted as "free speech."
The media describe Ann as a Conservative pundit.
However, a pundit -- "a learned person" who "makes...
Monday, October 22, 2012
Sunday, October 21, 2012
Halloween party!
Hope to see you at the Halloween Party at the Ontario Science Centre Saturday, Oct. 27 from 6 p.m. to midnight to raise money for Change for Kids at Holland Bloorvi...
Saturday, October 20, 2012
Thursday, October 18, 2012
What message do we need to convey?
At the Certain Proof screening last week, many said we had to be more vocal in telling our children's stories, and in making those stories mean something to the average person.
I later wrote a piece that touched on the negative picture of parenting kids with disabilities that often emerges from research on parent and sibling health, from media stories about families who are desperate for services, and from general attitudes...
Wednesday, October 17, 2012
What you said about Certain Proof
Listen to a discussion among parents, therapists and teachers following the screening of Certain Proof, a documentary about students with communication problems struggling to be heard in the school system. Jump to our Family Resource Centre and click on the second item: Audio: What you said about the film Certain Proof.
Then come back here if you have comments. Thank...
Tuesday, October 16, 2012
Monday, October 15, 2012
Staying sane in a world that hates disability
I woke up on Saturday and saw this New York Times piece in my alerts: The Psychic Toll Paid in a Special Needs House.
Great, I thought. What negative impacts of having a child with a disability have they discovered now?
The article is about how the psychological strain of deciding where a child who needs support will live, and the stress that special-needs parenting places on a marriage, are more challenging...
Sunday, October 14, 2012
Planet of Snail
A South Korean documentary about a man who is deaf-blind and uses finger-tapping to communicate, and his wife, who has a spinal conditio...
Friday, October 12, 2012
Little Coppelia
This is a breathtaking video of a little girl called Clara with DiGeorge syndrome and autism who, unbeknownst to her parents, had memorized the dance movements of the mechanical doll who comes to life in the ballet Coppelia. Compare her movements to those of the dancer in the inset. Her therapist filmed her. You can read more about her at the family's website: Clara's Happy Thumbs. Or watch this news story about her: Video of autistic girl's ballet routine goes vira...
Thursday, October 11, 2012
If you don't speak, you don't count, families find
The film Certain Proof is a jarring reminder of how children who can’t speak aren’t “seen” in our culture – are made invisible by people who assume they have nothing to say and a system that doesn’t give them the tools and time to develop a voice.
At the beginning of the American movie – shown at our BLOOM speaker night Tuesday – a doctor says that we have the medical care to save the lives of children...
Monday, October 8, 2012
Empathy, not productivity, defines us, geophysicist says
Xavier Le Pichon is a world-renowned geophysicist who helped create the field of plate tectonics – discovering that the earth’s outer crust is made up of plates of rock that continuously shift all over the globe.
While developing his scientific theories, he lived with his family and raised six children in the original community of L’Arche in Trosly Breuil, which brings together adults with intellectual disabilities and young adult volunteers...
Saturday, October 6, 2012
Language matters
The International Business Times refers to my beef with The New York Times over routine use of "he is severely retarded" to describe a person. See page three of the story, under the header: Sticks and Stones.
And Ellen at Love That Max also chimes in on the topic: Let's talk about people who cling to the word 'retard.' Loui...
Thursday, October 4, 2012
This Halloween, hand out more than a treat!
Denise and daughter Zoe share a cool way for Ontario readers and their kids to raise funds for children with disabilities at Holland Bloorview while winning prizes and celebrating Halloween.
The Change for Kids program features a coin card with 20 coins to hand out to trick-or-treaters. Kids get the chance to win amazing prizes, and for every coin entered at Change for Kids, Scotiabank will donate $5 to Holland Bloorview.
Don't forget to pencil in these accessible Halloween parties (too often kids who use wheelchairs or...
The Asperger's/Autism debate
Listen to a CBC Metro Morning discussion about how parents and doctors feel about the American Psychiatric Association's proposed change to have the diagnosis of Asperger syndrome fall under Autism Spectrum Disorder. On the panel is Dr. Jessica Brian, co-lead of the Autism Research Centre at Holland Bloorview.
Metro Morning: Changing Definition
We interviewed Jessica earlier on the topic here: New autism definition makes sense,...
Wednesday, October 3, 2012
'Come out to play'
Beautiful message from Three to Be, a foundation that raises funds for research and therapies to improve the lives of children with neurological disorders. Founded by Jared and Dana Florence. Dana shared her thoughts with us in this interview: 'I've learned not to take anything for granted...
Letter to the Editor of The New York Times
I was surprised to see a man who was allegedly abused described as "retarded" on the front page of your newspaper and in the first sentence of the related story (Lawmaker to File Suit Charging Abuse of His Disabled Son, Oct. 1, 2012)
(note to readers -- this was later changed in the online version above to "has a severe mental disability.")
I questioned your public editor on this practice, given that your style guide counsels neutral language...
One more on language
The rationale I have had from The New York Times is that they commonly use the word "retarded" because mental retardation is still a diagnosis in the American Psychiatric Association's (APA) diagnostic manual (DSM). In fact, I've done a search and realized that describing someone as "severely retarded" is common practice at the newspaper. Here's another recent example:
Ending Segregation of the Mentally Disabled
Thanks to another...
Tuesday, October 2, 2012
From the public editor of The NY Times
From: nytimes, public [mailto:public@nytimes.com]
Sent: October 2, 2012 12:50
To: Louise Kinross
Subject: Re: To the Public Editor
Thanks for writing. This is something we're continuing to examine. I didn't know the language in yesterday's article was changed, so that is interesting. I appreciate you pointing this out to us as we continue to look into this issue.
Best,
Joseph Burgess
Office of the Public Editor
The New York...
Use of 'retarded' in The NY Times
Hi -- I was grateful to have a response from Danny Hakim, the reporter who wrote Lawmaker To File Suit Charging Abuse of His Disabled Son in The New York Times yesterday. I blogged about it here.
Hakim was a collaborator in a series of articles called Abused and Used last year, which revealed widespread violence against and neglect of people with developmental disabilities in New York State group homes. When the series was named...
Monday, October 1, 2012
Word use and The NY Times: You disappoint me
I was surprised to see this "sell" to a story on the front page of The New York Times today:
"A New York State assemblyman who is a prominent advocate for people with disabilities plans to sue the organization that cares for his retarded son."
I turned inside to page 18 and read this lead:
"Ricky Weisenberg, 54, is severely retarded, cannot speak or even cry, and has cerebral palsy. But his parents know their way around the system:...
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