'It's not what you see. But how you see it'

This is a condensed version of an interview that appears in the January issue of BLOOM magazine. I don't think I've spoken to anyone who's made me stop and think the way Dr. BJ Miller does. Louise Dr. BJ Miller was a successful Princeton sophomore when he and his buddies decided, on a lark, to climb atop a parked commuter train; the lark turned dark when the train's electric voltage arced to his metal wristwatch, resulting...

Read More

Happy holidays!

Dear readers: I am off to England tomorrow to a small town not far from where this robin had its picture taken. I had booked this ticket to take care of my uncle in hospital there, but sadly he died last week. So now I will be staying at his home in the beautiful Suffolk countryside. The robin is appropriate because my uncle always sent us Christmas cards adorned with robins. Something I've noticed recently on the BLOOM blog: our...

Read More

Focus on deficits masks a child's beauty

A highlight of the ethics conference at Montreal Children's Hospital was a parent panel. Nathalie Bouchard, above, was one of those parents. Here she talks about how a medical focus on deficits harms the relationship between parent and child. Nathalie was interviewed in a playroom at the hospital. I'm happy to report that shortly after this interview a tiny dog was brought in for 'pet therapy' and there were no more tears! Thank you Nathali...

Read More

Still kickin' at Kumon

...

Read More

Advocacy in an unfamiliar culture

Getting your child with disabilities services can be a challenge. But imagine going to bat for your child in a language you don't understand? And what if you didn't feel comfortable talking openly about your child's disability? These are just some of the barriers facing parents in the Canadian Somali community says Shukri Farah (above) in another BLOOM cli...

Read More

This and that

Over 70 per cent of 1,148 respondents to an online survey by the UK's Contact a Family said they've experienced mental-health problems such as anxiety, depression and breakdown as a result of the isolation they experience raising a child with a disability. According to Forgotten Families, British parents report "a lack of social interaction due to difficulties working and not having the time or money to do family activities others take for...

Read More

Costs, quality-of-life ratings put complex kids' care at risk

Pressure to contain health costs over the next decade will put the care of a small group of children with complex medical needs and severe disabilities at risk, says Dr. Chris Feudtner, pediatrician and director of the department of medical ethics at the Children’s Hospital of Philadelphia. “About 20 per cent of the pediatric population generates about 80 per cent of our health-care bill,” said Dr. Feudtner at a Grand Rounds on ethics in...

Read More

The demonization of the disabled

There is a climate of hostility towards people for whom life is already difficult and it is being fostered by politicians and journalists, writes Observer columnist Ian Birrell. The demonization of the disabled is a chilling sign of the ti...

Read More

Swimming lessons

In the 1970s there were no special swimming lessons for kids with disabilities in Edmonton. My brother loved the water, so my parents registered him for swimming lessons. The staff looked at him and said that the teacher wouldn't have him in the class unless a family member was there to help Leo. My parents looked at me. I knew they wanted me to say I would sign up for the same class, and be Leo's helper. I told them what...

Read More

'Burden' of complex kids not whole picture, ethicist says

I was privileged to interview Franco Carnevale at the ethics conference on children with disabilities at the Montreal Children's Hospital last week. Franco is a clinical ethicist who worked for a couple of decades as head nurse in the pediatric ICU at Montreal Children's. He's also a psychologist! Here he talks about "an implicit understanding that (children with disabilities) don't count in the same way as other children" -- a bias found within the health system itself. To illustrate his point, he shares a research project to study families...

Read More

Does every child matter?

The results of 'Does Every Child Matter, Post-Blair?' were released today. The research project at Manchester Metropolitan University asked what life in England is like for disabled children age four to 16. Researchers spoke to disabled children, their parents/carers and professionals to ask about their lives from 2008-2011. Here are a few findings I know will resonate with readers. Check out the report in detail (link above) to learn about the researchers' recommendations. Louise disabled children sometimes sit outside 'mainstream'...

Read More

International disability day

Change your Facebook profile picture for the day December 3 to support the International Day of Persons with Disabilities. Use your own social network to raise awareness! How? 1. Visit the Holland Bloorview fan page. 2. Right click on our profile picture and select "save target as" in the drop menu. 3. Save the image on your desk top. 4. Go to your Facebook page and change your picture. Ask your friends to do the sam...

Read More

A fate worse than death?

I attended a fascinating conference Wednesday at the Montreal Children's Hospital on ethics related to the care of children with disabilities. One of the themes was cultural devaluing of children with disabilities – and how it can play out in decision-making about care, including whether to withdraw care from premature newborns with significant disability. A neonatologist in the audience made the following comment. “There...

Read More

Balancing a marriage and kids with special needs

Noor Al-Shaikh (above) and his wife Rita have three children. Gisele, 10, and Sienna, 5, have a rare, non-progressive condition called Juvenile ALS type 2. They can’t walk on their own and use canes, walkers or a wheelchair. Sister Iliana, 7, is not affected. While challenging, Noor believes raising children with disabilities has strengthened his relationship with Rita. In this BLOOM clip he shares strategies for keeping a marriage strong. To view this on a full screen, go directly to YouTub...

Read More

When is autism an advantage?

Changing perceptions: The power of autism is an interesting piece in the online Nov. 2 issue of Nature magazine which has produced a lot of blogger discussion. Author Laurent Mottron, a University of Montreal researcher in the cognitive neuroscience of autism, has eight people on his research team who have autism. "As a clinician, I...know all too well that autism is a disability that can make daily activities difficult," Mottron writes....

Read More

Filmpossible fever

Gabi Cherng and Gavin Daley, second and third from left, were recognized at the filmpossible awards last week as the stars of the first-place entry in the photo category -- Lucky fin love -- and the I can be me! video, which won the Cisco Visibility Award. They accepted the first award for Toronto photographer Annya Miller, who was unable to attend. Their submission included the comment: "Left...

Read More

Parents play critical role in safety of hospitalized children

A study published in the Canadian Medical Association Journal this week underscores the importance of families in identifying adverse events or near misses (medication errors, treatment complications, equipment failures or miscommunication between staff or between staff and family) in the care of hospitalized children.   Over one year, 544 families of children on a single ward at British Columbia's Children's Hospital were...

Read More

Talking about limb difference

In the first of a series of BLOOM clips, Janelle Cherng talks about explaining daughter Gabi's limb difference in social situations. In BLOOM clips parents and experts talk about childhood disability. Send us your ideas for future topics! Thanks, Loui...

Read More

Violin solo: 'It's not something I thought I'd be able to do'

We've written about Eric Wan (above) before, a graduate student in engineering at Holland Bloorview who helped develop the Virtual Music Instrument, a software that allows children who can't manipulate conventional instruments to make music. Eric, who was paralyzed at age 18, will play violin -- with head movements -- with the Montreal Chamber Orchestra tomorrow. Watch this YouTube video and read more in this Montreal Gazette piece...

Read More

'The third parent'

Sophia Isako Wong (left) is an associate professor of philosophy at Long Island University in Brooklyn, New York. She is also a sister to Leo (right), who has Down syndrome. Below is a short story Sophia wrote about her childhood. But first she speaks about her research into children who take on a parent role in caring for siblings with disabilities or other members of the family. In my research, I analyze existing psychological...

Read More

Seeing through a parent's eyes

  I'm speaking to a group of student engineers next week about our journey trying to find a robust means of communication for Ben. These students work with families to develop technology that gives children who can't speak or move access to communication and control of a computer. As I was putting the presentation together, it struck me that there were two distinct ways of "seeing" Ben. One was through medical descriptions that...

Read More

This and that

Sara, BLOOM's designer, and I walked in Spiral Garden the other day (above). It's the magical location for a summer program run by practising artists that brings together children with and without disabilities. It's a peaceful place that fills you up with nature and growth and colour. I've been mulling over some blog ideas in the last couple of days, but none have come to fruition. One is about what I perceive to be an unhealthy, over-emphasis...

Read More

Cognitive disability and personhood

  Author Donna Thomson (The Four Walls of My Freedom) directed me to a book called Cognitive Disability and its Challenge to Moral Philosophy. It's a collection of essays that address philosophical questions raised by people with cognitive disabilities, which the authors define as those with intellectual disability, autism and Alzheimer's disease. I haven't read the book yet, but the introduction notes that people with intellectual disability fall...

Read More

We had the same ache in our hearts

We've had guest blogs about the impact of a child’s disabilities or special needs on a marriage. I found a piece I wrote about the different ways that my husband D’Arcy and I reacted to Ben’s genetic condition early on. It can use some work, but I thought it might be of interest to other parents. D'Arcy read the piece and remembered some of these things differently, but was okay with me running it! Louise We had the same ache...

Read More

Does disability dampen teen sexuality? No! doctors say

Teens with physical and intellectual disabilities are just as interested in romance and sex as peers, but are less likely to have a partner because they lack social opportunities and sex education, say two McMaster University doctors. “Most of the challenges are a result of the widespread myth of asexuality and other negative stigma surrounding people with disabilities,” said Dr. Jan Willem Gorter, a physiatrist who runs a teen transition clinic at McMaster. Gorter was speaking with Dr. Natasha Johnson, a pediatrician in adolescent...

Read More

Silent Sunday night

...

Read More

Silent Sunday

...

Read More

Resting in that grey area

Some of you noticed that I deleted a post I wrote last weekend. I had wanted to share something going on in our lives -- from Ben's perspective -- without getting into a lot of detail. But because I felt compelled to respond to comments, I wrote more than I was comfortable with. I felt I had to defend my choices. It got me thinking about how there is no one "right" way to parent a child -- with or without disabilities. Our children and families are too unique to benefit from cookie-cutter solutions. But sometimes within the parenting community...

Read More

What advice would you offer a younger you?

BLOOM contributor Amy Baskin has a moving post at Today's Parent: it's a letter she wishes she could have written to herself as a brand-new mom to a child with autism. If you could look back and give yourself advice for those early days, what would it ...

Read More

Talk to me!

I'm keen to film and post a series of short video clips with parents talking on topics that matter to you. What would you most like to hear another parent talk about? Please let us know. Thanks! Loui...

Read More

Take your kid to work day

...

Read More

Happy Halloween from Ben!

I'm not sure if I mentioned that Ben went to his high school Halloween dance on Friday night. Apparently a group of girls asked him to dance, so he did. Ben transferred to a regular high school in our board in September. It has a deaf/hard of hearing program where the students have some classes on a separate unit and others in the mainstream with interpreters. I just received this message from the head of the program. She sent it to all of his teachers...

Read More

Silent Sunday

...

Read More

Book series brings Madi to life

I LOVED Sarah Leal's first children's book -- So Don't! And See What Happens. She just released a third -- The Cottage Tooth Fairy -- and is working on a fourth. One of the main characters in this series is Madi -- a girl with cerebral palsy who uses a voice device. Madi is based on Sarah's daughter Madi, now 15, who lives with Sarah and her husband Luis in Guelph, Ontario. I asked Sarah why she started this series and why it would be of...

Read More