Tuesday, January 31, 2012

Vote for Busy Bodies!

A seven-week program designed to get young kids with disabilities hooked on fun, physical activities is vying for a $50,000 grant from the Maple Leaf Sports & Entertainment Team Up Foundation Fund.

You can vote for Holland Bloorview's Busy Bodies program today and everyday until Feb. 20 (click on View the candidates, then click on Holland Bloorview Kids Rehabilitation Hospital Foundation).

Research shows that children with physical disabilities take part less in social, recreation and physical activities than peers.

Busy Bodies gets kids with disabilities aged seven to 12 out once a week to try creative dance, yoga, sledge hockey and wheelchair basketball.

Read about the difference the program made in Cassidy's life (above).

Then vote!

CHOP reviewing transplant eligibility of Amelia Rivera

The parents of a girl who was allegedly denied a kidney transplant at the Children's Hospital of Philadelphia because of her intellectual disability say they've won a review of her case.

In this article in the Philadelphia Inquirer, the Riveras say they met with hospital staff on Friday "after which they were given instructions on how to proceed with a possible transplant -- including how to have family members tested as potential donors."

Chrissy Rivera said her daughter Amelia's chart initially had the words 'mental retardation' listed as a reason not to do the transplant and that those words have been removed. However, Amelia's case need to be reviewed to see if she is a good medical candidate.

Monday, January 30, 2012

Half of Canadian kids with disabilities lack friends

Update: I just read the report and in fact over half the children had either no friends or only one close relationship with a friend (a little different than how it was reported).

A study that looked at the state of inclusion for kids with disabilities in Canada is disturbing and, I'm afraid, rings true in my experience.

AndrĂ© Picard in the Globe hits the mark in his piece about Anne Snowdon's study today, saying:

"In Canada, we talk a good game about integration, about breaking down barriers to allow the inclusion of people with physical and social disabilities in every aspect of daily life. But reality is more stark and harsh."

Some of the stats: 53 per cent of disabled kids have no friends or one close friend. Only 1 per cent spend an hour a day with friends.

"The problem is most serious for boys – who tend to have far more developmental disabilities and fewer social skills – and it gets worse with age," Picard writes. In childhood, efforts are made, but by the time kids hit age 10 or so, when cliques and social circles form outside of parental control, ostracization and isolation is near complete."

Thursday, January 26, 2012

News on Amelia Rivera case

The Wolfhirschhorn.org website has posted an update on the Amelia (Mia) Rivera case on its Facebook page. It includes the following. Of course this is one account -- that of Wolfhirschhorn.org representatives and the Riveras. It is good to hear that the family and hospital are actively working together. Louise

Over the weekend, a meeting took place between a number of the key leaders of the Children's Hospital of Philadelphia, the Riveras and wolfhirschhorn.org. The purpose of the meeting was to get an understanding of the chain of events that led to the Brick Walls posting. The meeting lasted a little over 90 minutes and the Riveras had an opportunity to tell their side of the story and the related concerns about Mia's needs and how CHOP handled the situation. CHOP agreed that the system is broken and that they are taking steps to fix the process. In addition to addressing Mia and the next steps with her transplant discussions, a few suggestions were made to CHOP about their involvement in a more macro-view of awareness around transplant rights for the disabled, and public and medical community education around the "mentally-retarded" phrase. CHOP agreed to follow up and communicate their action items by the end of this week.

Mia and the Riveras are planning a visit to CHOP in the near future to determine CHOP's role in her transplant and her ongoing medical care. Once that meeting takes place, we will issue a statement on the status of Mia, her care, and CHOP's involvement moving forward.

Wednesday, January 25, 2012

Teachers, students ostracize disabled children, study finds

A 2011 Holland Bloorview study sheds light on how children with cerebral palsy are ostracized and bullied at school.

A qualitative study of 15 youth aged eight to 19 with cerebral palsy published in Disability and Rehabilitation found that teachers and peers intentionally shut out children with disabilities. Examples include teachers who turn off a communication device for most of the day – rendering a student silent – and a teacher who refuses to allow a child to have a bathroom communication button because it will disturb other children. As a result, the child, who is toilet trained, must wear diapers.

Sometimes accommodations weren’t made, researchers found. Other times accommodations themselves – such as having students write tests in a different room – set the children apart physically. “There were more and more accommodations I would need that would make me stick out more different,” says one participant.

Many students said they changed schools several times because of the negative attitudes of teachers. They also found teacher attitudes influenced how their peers treated them.

Unintentional peer exclusion included leaving children out of activities because they were perceived as ‘fragile,’ busy with an educational assistant or ‘too slow.’

Intentional exclusion focused on children’s differences and included name-calling and being ignored. “The kids act like I am invisible,” one participant said. Four of the participants had been physically bullied over a number of years, which included being kicked and pushed and physically injured.

Students reported that they didn’t want to tell anyone about the bullying because they were ashamed.

In a follow-up study published in Child: Care, Health and Development, Holland Bloorview researchers asked the same group of youth with cerebral palsy how their participation in school life could be improved.

The students identified three key strategies: learn how to explain your disability to peers and teachers, rather than trying to hide it; improve disability and bullying awareness so students are more comfortable seeking help; and develop friendships by engaging in extracurricular activities. Research shows that having a support network of friends protects children from being isolated and bullied.

Tuesday, January 24, 2012

'Keep coming back'






















I wrote about the loss of Jamie Burnett, a therapeutic clown at Holland Bloorview who died in December. I want to write about something he left with me.

I visited Jamie twice in hospital. The first time I felt somewhat awkward because of the magnitude of what he and his family were going through. I wanted to visit because I wanted him to know the difference he made in our family’s life when Ben was an inpatient. But I didn’t want to be intrusive or disturb.

Jamie was tired during our meeting. I quickly saw the difference between his overly exuberant clown character ‘Ricky’ and the flesh and blood Jamie who was living with a brain tumour.

The one thing he wanted to hear about was Holland Bloorview. He wanted news on innovative things we were doing and he wanted to know how everyone was. He commented on how much he liked the foundation’s new fundraising campaign: No Limits. And we learned that Ben was going to the same high school he once attended.

At the end, he said something that will always stay with me.

“Keep coming back!”

In those words he let me know that it was okay that I came and he appreciated it. But more than that, I felt he was conveying a message about life. ‘Keep coming back’ was about continuing to show up, even during the most painful times. It was about courage when you can’t change a situation. It was about keeping that clown magic moving – from clown to child and child to clown – not letting it drop. It was the words I imagine he and his partner Dr. Flap heard (or saw in the eyes of children) so many times: Keep coming back.

Monday, January 23, 2012

Dressing gown? Check















It doesn't matter when your child does something -- if it's something he couldn't do previously, it's a thrill.

Ben can knot the belt on his dressing gown. He's never been able to tie his shoes because of fine-motor problems and we stopped trying to get him to years ago.

But recently I've been demanding that he not come out of his room at night till his dressing gown belt is tied. And he's finally got the hang of it.

It's one of many simple things we take for granted with kids who have regular hand control. In fact, we take so much for granted with typical kids that we miss the joy of many of the 'steps' along the way.

Tell us something new your child is doing or enjoying!

Friday, January 20, 2012

Film questions psychoanalytic approach to autism in France

"The Wall" ("Le Mur") above, is a documentary that calls into question the French practice of treating children with autism with psychoanalysis. Read more in these pieces below.

From Le Monde (English translation): Autism: Psychoanalysis against the wall
Autism may well be France’s National Cause for 2012, but families living with autism remain helpless. Why? Because in France, psychoanalysts oppose behavioural methods which have already proven their effectiveness abroad. A retrograde position highlighted by Sophie Robert in her documentary “The Wall” (“Le Mur”), whose public release hangs on a court decision to be given on January 26.

A French film takes issue with the psychoanalytic approach to autism in the New York Times.

More media


Teenager Carly Fleishman has written a book with her dad Arthur coming out in March called Carly's voice. It's about her breakthrough communicating with a computer after years growing up as a child with autism who couldn't speak. Carly uses WordQ, a word-prediction software developed at Holland Bloorview.

In case you missed this 20-20 piece on Carly, here it is above on Youtube. While I think there's much to be learned from Carly's experience, I think it's important to remember that many children who are non-verbal won't have similar breakthroughs. Sometimes I worry that stories like this will set a new expectation among the public and create even more pressure on parents.

New definition of autism will exclude many, study finds is a NY Times piece looking at proposed changes to narrow the criteria for autism by the American Psychiatric Association.

For those who missed CBC's Ontario Today interview with No Ordinary Boy author Jennifer Johannesen yesterday, you can listen to the podcast here and download it here .

And I LOVED this story about a 25-year-old man with Down syndrome who owns and operates a successful restaurant with the help of his family. Tim's Place: A dream followed

Happy weekend!


Marginalized group finds a voice in play






















Canadian playwright and director Judith Thompson is casting for a play that weaves together intimate stories from the lives of actors with Down syndrome.

It’s likely Thompson’s is the first play to give voice to this marginalized group: studies show that over 90 per cent of people given a prenatal diagnosis of Down syndrome opt to terminate.

The play – to run at Toronto’s 2012 Fringe Festival in July – will be a montage of monologues that explores what it means to have an extra 21st chromosome.

It will be modelled on two of Thompson’s earlier pieces – documentary dramas Body and Soul and The Grace Project: Sick. The former saw women share stories of life after age 45 in the form of a letter written to their bodies, while the latter gave voice to the experience of youth living with chronic illness or disability – people often stigmatized as being ‘sick.’

I interviewed Madeleine Greey, the writer producing Thompson’s new play, and mother to Krystal Nausbaum (photo above), an actress with Down syndrome who performed in The Grace Project: Sick and hopes to be part of Thompson’s new cast.

BLOOM: How would you describe the new play?

Madeleine Greey: It’ll be a series of monologues woven together about what it feels like to have Down syndrome. The play currently has no script and Judith has a way of coaching stories from people, then spinning her magic and writing and directing them into a cohesive form. This will not be a romanticized version of Down syndrome. We’re not getting anyone else’s interpretation of it. We’re going right to the source – people with Down syndrome. We want to face it head on. What does it feel like to have Down syndrome? What are the high points, what are the low points, what is it really like? Judith is not afraid of the difficult stuff and she’s interested in digging deep to find the joy and pain of every person’s experience.

BLOOM: Who can audition for the play?

Madeleine Greey: We’re looking for people with Down syndrome from teens to senior citizens. Verbal skills and previous acting experience aren’t prerequisites. Judith is well aware that lots of people with Down syndrome may be challenged in terms of verbalizing their story but she’s interested in having them express it in different ways – through dance, song, maybe even visual arts.

BLOOM: How demanding is the rehearsal schedule?

Madeleine Greey: We need people who can make what is a huge time commitment. In May and June we’ll be rehearsing Thursdays, Fridays and Saturdays from 11 a.m. to 5 p.m.

BLOOM: Why did you decide to produce the play?

Madeleine Greey: To be blunt, I’m always looking for opportunities for my daughter, that’s number one, and then secondly, my big motivation is to work with a person who is so creatively renowned. I have great trust in her. And thirdly, I believe that this play, which currently has no script, is going to reveal to audiences in Toronto what it means on all different levels to have Down syndrome. This is a group that doesn’t often have an opportunity to express itself.

BLOOM: What impact do you hope the play will have?

Madeleine Greey:
I hope people walk out of this play saying ‘Wow, I had no idea.’ That’s my biggest hope. I feel you can go into theatre like this and meet people that you never would have encountered in your life, learn the most intimate things about them and be so deeply enriched by it.

Auditions for the play will be held Feb. 4 and 5 at Fringe Creation Lab at 720 Bathurst Street, 4th floor. Call Madeleine at 416-469-0852 or mado@madeleinegreey.com to reserve your spot. The audition will be like a group discussion where participants tell their stories.

Thursday, January 19, 2012

Links to this and that

Many of you follow Enjoying the Small Things, Kelle Hampton's blog that chronicles her life with four children, one who has Down syndrome, in words and images. Last year Kelle raised over $100,000 for the National Down Syndrome Society in the U.S. and she's at it again this year, edging closer to her goal of raising a total of $200,000. Check out her 2 for 2 campaign video above to honour daughter Nella's second birthday.

Have you seen Noah's minute? A dad video-blogs about life with an adorable toddler with Down syndrome at Noah's Dad.

This is an interesting piece in the Globe and Mail today: Why care less about the disabled fetus?

Here's a blog about acceptance by the mom of a child with intellectual disability: Realistic optimism.

Wednesday, January 18, 2012

A communications primer on the Amelia Rivera case

Update: The family has agreed to meet with hospital officials next week.

Acknowledgement. Empathy. Action.

It’s a well-known prescription for corporate crisis communications following an error.

Since we weren’t in the Children’s Hospital of Philadelphia room when a doctor told parents whether their child was eligible for a kidney transplant, we don’t know what transpired.

We do know that two parents left that meeting with the understanding that their daughter, Amelia Rivera, was being denied a life-saving kidney transplant because she had mental retardation and what was perceived as a 'diminished' quality of life.

At a minimum, the hospital needs to acknowledge to the family that a terrible miscommunication took place and meet with the family until they understand clearly the hospital’s position.

A 2011 white paper by the Institute for Healthcare Improvement notes that the number one priority for outreach following serious adverse events is the patient and family. While this event didn’t cause the patient harm, I would argue that it harmed the parents. Certainly mainstream media coverage has turned the event into a serious one for the reputation of the hospital.

“Who is the organizational 24/7 contact person for the patient and family?” is first on IHI's adverse event checklist (you have to register at IHI to access this).

According to Sunday Stilwell, the blogger who organized the change.org petition that over 27,000 have signed in favour of Amelia receiving a transplant, contact with the hospital has been minimal.

Stilwell says the family was contacted by the hospital on Sunday with a request for a meeting to discuss Amelia’s case, but the hospital hasn’t followed up that call to book the appointment.

In the meantime, CHOP has posted about its transplant criteria on its Facebook page:

CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status.

What I took from this statement was that cognitive status is a factor in the evaluation process, but not the only factor.

Later we read:

CHOP does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities…

At this point, we still can’t ascertain how cognitive status fits into the evaluation process. What are all of the factors considered, and how much would developmental delay weight a child against receiving a transplant?

In the same Facebook message: We are also taking action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way.

It’s good to hear that they are reviewing their policies to make sure they’re not discriminatory.

If in fact what the parents took from their meeting is incorrect, the hospital needs to express empathy to the family for the pain they experienced based on this miscommunication. According to one news report, the family did receive an apology by phone on Sunday.

Then the hospital needs to work with the family to come up with a clear plan to prevent future misunderstandings when this kind of transplant information is conveyed.

If there was no miscommunication, the hospital has different issues on its hands.

Either way, the incident has got people talking about the ethics of transplant eligibility for people with intellectual disability, and that is obviously a good thing.

Dr. Art Caplan, a bioethicist writing for MSNBC online sums it up beautifully: …"Children with intellectual disabilities do not appear on transplant waiting lists with the frequency that should be expected…There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases."

Tuesday, January 17, 2012

Join the conversation on CBC Radio

BLOOM contributor Jennifer Johannesen is being interviewed on CBC Radio One's Ontario Today this Thursday, Jan. 19 about her book No Ordinary Boy and experiences raising Owen (above), a boy with multiple disabilities who died at age 12 in 2010. One of the CBC call-in themes? "The pressures placed on families (created by ourselves and others) to continue working on ‘improving’ our children and moving towards sometimes impossible goals," writes Jennifer on her blog YES or NO.  

Calls from North America will be taken this Thursday between 12 noon and 1 p.m. at
1-888-817-8995.

The show can be heard on FM 99.1.

Jennifer is kicking off our BLOOM speaker series with a talk on Wed. February 15, 7-9 p.m. in the Family Resource Centre at Holland Bloorview. It's called Redefining success: Decide for yourself what really matters. RSVP to ndyke@hollandbloorview.ca.

Monday, January 16, 2012

The transplant debate

FINALLY -- major news outlets have written about whether a New Jersey child who has a genetic condition and intellectual disability should be denied a kidney transplant. The blogosphere has been abuzz with opinions by parents of children with special needs over the last couple of days and over 38,000 people have signed a petition asking the Children's Hospital of Philadelphia (CHOP) to reverse its decision.

Today in the Huffington Post, Parentlode blogger Lisa Belkin argues that Amelia Rivera (left) should not be eligible for a transplant. And in a companion piece, Susan Senator, author of Making Peace with Autism, argues that she should.

Check out this interview with the family on NBC.

You can read Amelia's mother's account of a conversation she had with a transplant doctor at CHOP about Amelia's eligibility. And you can read a number of responses CHOP has posted about its transplant criteria on its Facebook page.

You may also be interested to read these recent BLOOM posts about an ethics conference at the Montreal Children's Hospital which looked at how cultural devaluing of children with disabilities plays out in their care:  The disability paradox; Costs, quality-of-life ratings puts complex kids' care at risk; Burden of kids not whole picture, ethicist says; and A fate worse than death.


Too many balls

I was driving home with a foggy head Friday when I saw 3:30 on the dashboard and my brain made the connection: Ben had a physio appointment at 3:30 to check out pain he's had in his right knee. The appointment required me to get him to Holland Bloorview from school instead of home. But I had completely forgotten to call the cab and now Ben and I were both minutes from home.

Just hours earlier, as I stood in the elevator at work, seeing a colleague had jogged my memory of this appointment and I thanked said colleague.

But somehow in the course of the ensuing day the appointment file in my brain went missing.

I often tell D'Arcy I can't keep up with the pace. I'm juggling too many 'balls' and one of them is bound to fall.

I began Saturday doing what I typically do on Saturday: I make a list. My list included things like: Fill out Ontario Disability Support Program application online; set up appointment to look at My Voice device with Ben; get Ben to do Kumon and homework and me to exercise; write thank yous; go grocery shopping; go to mall to buy Ben some track pants and take to cleaners to be shortened; call Motion Specialties back about the bath bench; e-mail school board about the letter that arrived stating Ben hadn't been admitted to receive OT services through CCAC because the wrong form was sent (yes, someone put a stamp on a letter and snail-mailed me this information!); go to Cherry Beach; read Ben a chapter of Harry Potter; get Ben to use new WordQ software we have on iPad; e-mail teacher about his progress in Kumon.

I was so exhausted after reading my list that I had to turn on the fireplace and collapse under a throw on our couch for a couple of hours (and hope everything would go away).

There are items that have dropped off the to-do list in the last few months. Not because they've been accomplished, but because I can't even 'go there' at the moment. Things like a four-hour meeting to find out if Ben qualifies for developmental services as an adult; picking up his new hearing aid which had to be fixed in a busy part of town where you can't park (he's wearing his old pair); getting after an agency that was supposed to provide us with a behaviour consult; and coming up with co-op work ideas for next year.

I'm sure everyone reading this can relate with their own list of 'to-dos,' many of which are largely wishful thinking. "If I just write it down, somehow I'll get one step closer to it," I tell myself.

When Ben drives away in the cab in the morning I feel like D'Arcy and I have run a mini-marathon. Meds? Check. Leg in brace and stretched? Check. Glasses cleaned? Check. Hearing aids in? Check. Lunch? Check. Sticky-notes to communicate with educational assistant in agenda? Check. Any number of supplies Ben may need at school? Check.

The one day it snowed last week we realized as Ben was about to go out the door that his boots had been sitting on our porch and were full of wet snow. No check on the boots. Hope the shoes don't get wet.

Sunday, January 15, 2012

Silent Sunday



Saturday, January 14, 2012

Cognitive disability disqualifies child from transplant















Donna Thomson, author of Four Walls of My Freedom, posted today about a New Jersey family (above) whose daughter Amelia is being denied a kidney transplant because she has 'mental retardation.'

Amelia has Wolf-Hirschhorn Syndrome, a genetic condition associated with intellectual disability.

The story was posted by her mother on this site run by parents of children with the syndrome. Amelia (above centre) needs a kidney transplant. Here is part of the conversation her mother Chrissy reports between herself and the Nephrology doctor at the Children's Hospital of Philadelphia:

"So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is mentally retarded?"


"Yes, this is hard for me you know."


My eyes burn through my soul as if I could set him on fire right there. "Ok, so now what? This is not acceptable to me. Who do I talk to next?"


"I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and then we will vote."


"And then who do I see?"


"Well, you can then take it to the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won't be done here."



The Children's Hospital of Philadelphia posted this message on its Facebook page yesterday: CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status.

I think the operative word here is 'solely.' The hospital has not said it doesn't consider intelligence in its evaluation for eligibility, only that IQ is not the sole factor.

I did a quick google search and found this study which showed that kidney transplants were just as successful in people with intellectual disability as those without, in terms of survival rates after one and three years.

I also found this paper about an area in Northern Italy that denies any organ transplants to people with intellectual disability. People with intellectual disability are simply not eligible for transplants there.

BLOOM has posted a number of pieces recently about how cultural devaluing of people with disabilities plays into decisions about their care, including whether care is withdrawn: The disability paradox; Costs, quality-of-life ratings puts complex kids' care at risk; Burden of kids not whole picture, ethicist says; and A fate worse than death.

We've also posted about protocols that would see children with certain intellectual and physical disabilities denied intensive care treatment during a pandemic.

Here is a video about Amelia.

I tried to post a comment on the Wolf-Hirschhorn website, but the story has gone viral and I believe is getting so many hits that the comments function seems to have frozen.

So let us know what you think about this here! Louise

Friday, January 13, 2012

Raising a child who wasn't supposed to survive


I met Esmirna Lopez-Cugurs (above) and daughter Amanda at the Montreal Children's Hospital. Here Esmirna talks about Amanda, 4, who has Trisomy 18 and wasn't expected to survive. I think Amanda found the topic rather boring and was encouraging us to include her! The Lopez-Cugurs family attended an ethics workshop about how cultural devaluing of children with disabilities can play out in their care. Amanda's dad Eric spoke about his family's experiences on a parent panel. Thank you Esmirna and Amanda!

Mr. Kumon















We've had two lovely nights of Kumon where Ben has really enjoyed it and is showing that he's memorized adding 2 to most numbers up to 15 -- and even goes back to correct mistakes.

Remember, prior to the summer, Ben had never been able to write and he never seemed to 'get' math. Part of the problem was that he couldn't 'play' with numbers the way other kids do by counting out loud or writing them down. And we never had solid signs for the numbers either, because he had trouble manipulating his fingers to make them. So he never had a good mental awareness of numbers.

When we first moved  in Kumon from adding 1 to adding 2, sometimes he would default back and simply start adding 1 to every number (like he just wanted to get this work over with and he'd start racing through and not paying attention). He had to be reminded to add one, and then go to the next number for two. We sometimes used a number chart and he would count along two spaces with his finger while I counted out loud: "One, two." I don't think he's ever laid down counting in his mind (so that he could say it in his mind while he was moving his finger).

I figured it was going to be a big deal to learn sums for the other numbers. But when one of his books included + 3 problems he surprised me by getting the correct answers for some -- without looking at the number chart. I just about lifted him off the floor with a high five!

I realize this won't proceed the way it does with typical kids, whose brains are wired to leap from adding to subtracting to multiplying and so on. And sometimes I wonder if having him learn simple math isn't a good use of time in terms of giving him something he can use functionally in life. But when I see the sense of accomplishment he gets chugging along through his Kumon books -- and being one of the kids who sits at our dining room table working -- it makes me happy.

Another neat thing I've noticed is that Ben has begun writing a stylized 'a.' Instead of writing an 'a' as a circle with a stick on the right side, he writes it as you see it in this font: 'a.' He still has trouble writing and writes larger than usual and it's hard to read his writing. So it's not like his writing is perfect by any means. But I find it intriguing that this kid who couldn't write a few months ago has begun writing a fancy 'a.'

Ben was thrilled yesterday because his Halloween Town High movie arrived in the mail. The other night he found it on Amazon and put it in the cart and asked me if we could get it. Since then he's been asking every day when it's coming. Ben had an early closing day at school and was at home with D'Arcy when the movie arrived. Apparently all afternoon he was signing "Thank you Mom for getting the movie."

Thursday, January 12, 2012

Perfection

My stomach tightened when I saw the 'sell' for this story about genetic engineering in last weekend's Globe and Mail.

Invitro-fertilization and genetic testing are increasingly used by couples... capable of conceiving naturally to screen out not just catastrophic diseases but other 'undesirable' conditions.

What are those undesirable conditions? One company that screens genes is considering adding the skin condition psoriasis to the list, the article says. The 'undesirables' also include not health conditions, but physical features like short height that don't fit with our North American concept of beauty. We hear about a fertility clinic in Mexico where Canadian and other couples go for IVF -- not because they can't conceive, but because they want to select whether it's a boy or a girl (a 'no-no' in their home country). We hear that on the horizon are DNA microchips that analyze genes that influence height, intelligence, hair, skin and eye colour and athletic ability.

The piece refers to a 2009 survey of 999 people that found that most supported prenatal screening that would result in the abortion of fetuses with serious diseases, along with mental retardation (75 per cent) and blindness (56 per cent). At least 10 per cent of respondents to this New York University School of Medicine survey also favoured improving height and 13 per cent considered it acceptable to screen for intelligence.

The piece begins with this sentence: Humanity has long dreamed of perfection, striving to be faster, stronger and brighter.

Is that your definition of perfection?

To me it sounds a bit like a robot.

What about striving to be deeper, gentler, less judgmental, more kind?

The article notes that "We now have the potential to banish the genes that kill us..."

Isn't that a bit of an overstatement? Isn't the human condition still a fatal one?

Tuesday, January 10, 2012

Ben update

A quick update on Ben. He's back at school and happy to go. He's able to sit for 30 minutes or more to do his Kumon, which is quite remarkable because in the past it was hard to keep his focus on anything for more than about five minutes. It's still hard for him to write but he does it. He's still early on in the Kumon reading program but he got 90 per cent on his test at the Kumon centre before Christmas.

We started him on math, which has always been a challenge. He's able to do addition adding '1' and is learning to add '2' (some of these sums he's memorized). Because he doesn't speak and never wrote, he's never been able to 'play' with numbers the way other kids do. So I'm happy he's just becoming more aware of numbers. It is hard work for him and he has to 'think' about it whereas other kids seem wired to learn their numbers and basic math skills automatically (they can keep all kinds of numbers in their mind at once and manipulate them easily).

Ben gave some really cool ceramic pieces as Christmas presents this year. He made them in his ceramics class at school. I know he's not crazy about the class due to his sensory issues but I loved the aqua vase I got with fish and bubbles on it.

We got a bath bench so that I don't have to lift Ben in and out of our claw foot tub. He can sit on the bench, which is placed level with the edge of the bath, swing his legs over, and he's in. I was secretly thrilled when he got out and put on his pajamas by himself (even if he did leave about five towels on the floor).

I had a call yesterday from an adult hospital that will see Ben for dental when he turns 18 in March. A scary thought. Most of the services we've received under one roof here at Holland Bloorview will now be accessed at multiple adult hospitals where staff won't have the same understanding of youth with childhood disabilities.

Ben had an episode of bad pain in his right knee that kept him up for hours one night last week and left him limping for the next couple of days. This is on the knee that wasn't operated on last year. He has huge bony growths around both knees and I assume one was pushing against a nerve or in some other way bothering him. We haven't had that kind of pain since before his surgery more than 18 months ago and it was a frightening reminder of the constant pain he'd been in before. All seems well now so hopefully it was just a blip. I don't like to think about possible surgeries he may need in the future -- and in particular having them done in an adult hospital.

Ben is still in love with the cowgirl Jessie from Toy Story. I feel pressure to 'push' him into more age-appropriate interests, but then I think: "Why shouldn't he enjoy what he enjoys?" But I can see how it sets him apart from other kids. For example, at Christmas he was disappointed when his younger cousins weren't interested in watching Halloween Town 2. I had encouraged him to ask them if they'd like to watch it and he had his heart set on it. But everyone wanted to see Harry Potter.

I'm reading him the third book in the Harry Potter series and he loves that. In fact, at a recent scary part involving a dementor he put his hands over his eyes, then signed: "I can't look!"

He did have a fabulous dinner at his aunt and uncle's house before Christmas. He chose to rent the movie Cowboys and Aliens for that night.

I am grateful that Ben is in school during the day and I don't like to think about how we'll create meaningful days after age 21.

How are your kids doing??? Louise

Monday, January 9, 2012

The disability paradox

Satisfaction with life is subjective and hard to measure in another person, says clinical ethicist Lori Seller at The Montreal Children's Hospital. That's why people with disabilities rate their happiness with life as high, while doctors projecting quality of life with these conditions assume it would be low. Lori looks at research that shows that the way a health problem or disability is framed influences how a  family makes treatment choices for a child. To watch in full screen go to Youtube. Lori spoke at a grand rounds on ethics in the care of disabled children at Montreal Children's in December. Thanks Lori! Louise

Friday, January 6, 2012

A tribute to the clown who let us dream















I was gripped with fear about my son’s pain and challenging rehab. Would he ever walk again?

Then out of nowhere they’d appear on the hospital floor and launch into a magnetic Star Wars scene: Dr. Flap would be C-3PO and Ricky would be Darth Vader.

My mind would pop out of its prison, my stomach would fill with a slow, grounding breath, and my face would spread into a grin.

Ben – immobilized in a body cast – would giggle.

They were light and joy and laughter in the midst of pain and fear and despair. They could make you forget – they could make anything possible, for they were Holland Bloorview’s therapeutic clowns.

And one of them is no longer with us.

Jamie Burnett (photo right) – who many of you knew as Ricky – died on December 18 at age 33 after a long journey with a brain tumour.

I used to stand transfixed watching Ricky and Dr. Flap (Helen Donnelly, photo centre). No matter which hospital room we were in or whether the child could speak or move, the duo would create a kind of magic that bounced like a ball between the clowns and the child and the child and the clowns. Sometimes the magic moved back and forth through blinks of the eyes alone, sometimes through silly body movements and sounds. Sometimes it was a child conducting the taps of drum brushes on a wheelchair tray or commanding the clowns to perform outlandish antics. Sometimes it was an elaborate story the child told and the clowns acted out. Other times it was a dance to the strums of a red ukelele.

“When children come in here they lose all power,” Jamie told me in an interview two years ago. “They lose control of their bodies due to some illness…and they have doctors telling them what to do, and parents telling them what to do…

“We allow them to come to a space of complete freedom and imagination…and go wherever they would like to go and that, I think, is so essential, not just in terms of being a human being, but in terms of becoming a healthier person. I am always amazed at the courage they show and I am always amazed at the beauty of their spirits, and their ability to move through with such humour and grace…"

Jamie’s wife Rebecca has shared these details about a Celebration of Life for Jamie: It will be held on Sunday, January 15 at 918 Bathurst in the Great Hall. A formal service will begin at 4 p.m. Children are welcome.

An informal party will take place from 5:30-9 p.m. During this part of the evening, we invite all forms of creative expression. If anyone would like to pay tribute to Jamie, please let us know.

If you plan to attend, please RSVP to Karl Gad at kayayarel@gmail.com. The venue is not fully accessible so please make any special needs known in advance.

In Jamie's memory his family invites donations to the Therapeutic Clown Program at Holland Bloorview by visiting hollandbloorviewfoundation.ca or by calling 416-424-3809.

Thursday, January 5, 2012

This is how I do it













Check out these five guest posts on Ellen Seidman's Love That Max blog.

Ellen interviews five mothers to find out 'how' they parent children with a variety of disabilities. Great practical advice here! Louise

Katrina of Fickle Feline, mom to Max, 5, with autism

Sunday of Extreme Parenthood, mom to two boys with autism

Dana of Uncommon Sense, mom to a daughter with an undiagnosed genetic condition

Debbie of Finding Normal, mom to a daughter with trisomy 9

Andi of Bringing the Sunshine, mom to a daughter with CP and a son with Down syndrome

Tuesday, January 3, 2012

After medical error: Care for the caregiver















Last year at a conference on family-centred care, I heard about the emotional anguish nurses and doctors experience after making unintentional medical errors that cause harm.

“How do people come back from that?” I asked colleagues of mine. “Some don’t,” I was told. “They leave the profession.” Others were so full of guilt, despair and self-doubt that they couldn't sleep for months. Some experienced post-traumatic stress disorder.

Then I read about Kimberly Hiatt, a seasoned critical-care nurse at Seattle Children’s Hospital who accidentally gave a fragile baby 10 times too much medication in 2010. The baby died five days later – though it was unclear if the error had caused her death. It was Hiatt’s first serious medical mistake in an exemplary 24-year career. She was escorted from the building, fired, and seven months later, devastated, according to her family, took her life.

While progress has been made in investigating adverse events to make healthcare safer, and in supporting the patient and family, little attention has been paid to the experiences of frontline clinicians.

“Health-care workers are often impacted by medical errors as ‘second victims,’ and experience many of the same emotions and/or feelings” as the patient and family members, write the authors of an editorial in the January 2 issue of the British Medical Journal on Quality and Safety.

Yet supporting staff hasn’t been the focus of how hospitals respond to errors.

"Everyone who'd been involved left the hospital," recounts Dr. Gary Brandeland, a family doctor writing in a 2006 Modern Medicine blog about his patient who died during a C-section because of a fatal anesthesia error. "I looked out the window, and saw nurses who had been in the OR literally running to their cars to escape the horror of what had just happened. The senior OB who had performed the C-section disappeared. I was just the first assistant...Not surprisingly, no one from the hospital administration, the nursing staff, or the medical staff including the operating OB, wanted to join me" in telling the family of the accident. "I was told by several people, 'You're the family doctor, it's best if you speak to them.' I walked in alone."

In a 2011 study published in the Polish Archives of Internal Medicine, 60 per cent of 350 health-care workers at Johns Hopkins Medicine could recall an adverse event in which they identified themselves as a ‘second victim,’ and more than half experienced anxiety, depression and concern about their ability to do their job.

"Most harm from medical errors results from bad systems, not bad people," write the authors of a 2011 white paper on Respectful Management of Serious Clinical Adverse Events by the Institute for Healthcare Improvement (you need to register at IHI to view this document). "Many health-care organizations have learned that, in the aftermath of a clinical adverse event, they could fire all the staff involved and it would do nothing to improve safety or prevent a similar event from happening again."

“We typically want to find the broken parts, fix them, remove them, and make sure that they can’t contribute to failure again,” writes Dr. Sidney W.A. Dekker in an April 2010 article in The Joint Commission Journal on Quality and Patient Safety. “However, complexity theory says that if we really want to understand failure in complex systems, we need to ‘go up and out’ to explore how things are related to each other and how they are connected to, configured in, and constrained by larger systems of pressures, constraints and expectations.”

For example, in a fatal medication error in 2006 that saw Madison, Wisconsin nurse Julie Thao fired and charged with a criminal offence, a recommendation from the root cause analysis was that the hospital reduce the risk of staff fatigue by setting policies that limit maximum work hours. Thao had worked two consecutive eight-hour shifts the day before the error, finishing at 12:30 p.m., then slept in the hospital before coming on duty again in the morning. “Systems problems include an overdependence on people being perfect without systems that support their humanness," says Jim Conway, a senior fellow at the Institute for Healthcare Improvement and an author on its adverse events white paper.

Paul Levy, former president and CEO of Beth Israel Deaconess Medical Center in Boston wrote an interesting blog about the reaction of families to medical errors: Do patients want to punish? “The literature on the topic of disclosure and apology suggests that patients and families are not interested in having the doctor or nurse be punished when a medical error occurs, if (and this is an important if), the clinician makes clear that he or she is clearly regretful about the error, is empathetic with the patient, and if the clinician and hospital show that they plan to learn from the error to help avoid repeats with other patients."

I asked Conway what parents of children with disabilities and chronic health problems need to consider about medical error. “The first thing is if they see something in their child’s care that doesn’t look right, say something,” Conway said. “Ask questions. For family members who sit on advisory committees that examine medical errors, focus not on ‘Who did it?’ but ‘What happened?,’ ‘Why did it happen?’ and ‘What’s being done to prevent it from happening again?’"

The IHI white paper says immediacy, transparency, apology and accountability are the hallmarks of a strong crisis response to medical error, and should focus, in this order, on the patient and family, frontline staff and the hospital.

An evidence-based Care of the Caregiver safe practice released in 2009 by the National Quality Forum includes five rights of caregivers following unintentional errors. They include: treatment that is just; respect; understanding and compassion, including a formal process led by an administrator to invite co-workers to express understanding and compassion to those directly and indirectly involved; supportive care – where staff are considered as patients requiring immediate and ongoing care; and transparency, where staff participate in the investigation and analysis of incidents.

As noted in an article by Dr. Charles Denham in the April 2010 Joint Commission Journal on Quality and Patient Safety: “When (Wisconsin nurse Thao), still an employee, went to the hospital pastoral care service, her co-workers were invited to come and console her. Instead, she and her co-workers reported that their nursing supervisor came to the department and ordered her physically off the property, forcing her nursing colleagues to console her, sobbing and exposed, outside on a sidewalk. Was this respect and compassion – or cruelty?”

The top five supports for ‘second victims’ of medical errors identified in the Johns Hopkins study were: prompt debriefing; an opportunity to discuss ethical concerns with the event; the ability to discuss how similar events can be prevented; timely information about the processes that take place after an event has occurred; access to counselling, psychological or psychiatric services; and formal emotional support.

There are excellent resources available online: Medically induced trauma support services includes a downloadable toolkit for supporting clinicians.

What do you think?

Monday, January 2, 2012

A gift for BLOOM















David and Lynn Coriat (parents to Jessica above) have donated $100,000 to BLOOM. I interviewed David to learn about why his family made this generous donation! David is executive vice-president and chief financial officer at Slaight Communications, an investment and entertainment company in Toronto. Slaight is a partner in SiriusXM Canada. Covering the costs of BLOOM – which is mailed free of charge to families and professionals – is always a challenge. The Coriat’s significant donation will make both 2012 issues possible and allow us to expand into new formats – including a BLOOM speaker and video series. Thank you David and Lynn! Louise

BLOOM: What is your connection to Holland Bloorview?

David Coriat: My connection is my daughter Jessica, who has seen Dr. Wedge there on numerous occasions after surgeries. Jess has an affinity for Holland Bloorview and her eyes light up whenever she’s there. She’s told us a lot about what Holland Bloorview does for the kids.

BLOOM: Why did you decide to make this donation to BLOOM?

David Coriat: BLOOM offers parents a forum to learn more about other kids with disabilities and to learn about the environment as a whole – at a time when a lot of their friends and associates tend to move away from them because disability is still a stigma in our society. Parents of children with disabilities face challenges on a daily basis. What BLOOM does is offer a forum for learning and sharing and the comfort that “I’m not alone. There are a lot of people in the same situation.”

BLOOM: What have you learned as a father raising a daughter with a disability?

David Coriat: Our society still has a negative view of people with disability and our environment is not set up to nurture children with disabilities. Unless they’re fighters, these kids get buried in the system and shunned. When my daughter went through the school system, she was ridiculed. She has a strong personality and a tough skin, and was able to take it. But now I see her at 21 desperately looking for a job. She passes all the phone interviews because she has the gift of the gab, but the minute an employer sees her walker, the doors close.

BLOOM: What changes would you like to see to improve the lives of children with disabilities?

David Coriat: It has to start at the political level where disability is put at the forefront. And there has to be education at the school level, because kids are mean – and their parents are even meaner – when they see a kid with a disability. I think it’s going to take a couple of generations before kids with disabilities are accepted as part of the mainstream.

BLOOM: Is there anything else you would like our readers to know?

David Coriat: The key in my mind, for parents, is that even in your darkest day there is always a light at the end of the tunnel. There’s always a friendly shoulder or ear out there if you look for it – particularly among other parents who understand the challenges. And that is why I wouldn’t hesitate to support BLOOM. It provides a forum for hope and gives parents perspective.