thanks for all the giggles


I was recently dismayed to discover that I’m stumped for conversation when I get together with moms who don’t have a kid with a disability. I immediately dive into heavy topics, and seem unable to engage in simple chitchat. I fear that I’ve socially segregated myself. Too much heavy.  Not enough fun.

Aaron is 11 years old and I am still in need of peer support – perhaps as much as I did when Aaron was first born. I am very fortunate to have a handful of super women to lean upon. If I’m stuck for a strategy or I just have to vent, there’s a flurry of texting, emailing and calling. Us moms rarely get together for something else, however; we rarely get together to have FUN.

On Saturday night, I went out with four other Down Syndrome Moms. To clarify, the moms did not have Down syndrome; but we all have kids with Down syndrome. (Only moms with kids with Down syndrome will find this wordplay amusing). There was a food and wine festival at our convention centre. It was like a massive trade show for eating and drinking that morphed into a rowdy crowded bar scene as the evening wore on.

We got dressed up, teetering on heels & sporting sparkly outfits, with $20 bills stuffed into our purses. Our husbands dropped us off downtown, and we spent the next four hours gleefully spending coupons at booths for charcuterie plates, mac & cheese, chocolate and cupcakes. We cruised around for little samples of flavoured vodka and fruity beer. Every once in a while, we paused at a stand-up table to chat.

As organizer, I took it upon myself to offer only one rule: No talking about school. No talking about our kids’ school situation; how many times we’d been called by the principal last week; how our kids get zero birthday party invitations; how we struggle with funding to support our kids; how curriculums aren’t being adapted. Talking about what became known as the ‘s’ word was not allowed. If you mentioned the ‘s’ word, you’d have to buy the posse a round of drinks.

This was effective and surprisingly freeing. We were liberated from a topic that normally dominates our conversations. I guarantee that anybody who has a child over the age of ten with any sort of difference is obsessed with the education system. Instead, we talked about current events, politics, fashion, food, favourite drinks, movies, music, and winter holiday plans. It was terrific and awfully normal. There’s certainly a time for advocacy and venting. And then there’s a time for fun.

Cheers to you, my awesome lady friends. Thanks for all the giggles. xo.

a kiss on the forehead good night

Purple-Butterflies-butterflies-17473487-1024-768When David Sheard spoke today, the sky opened up right into the dark ornate ballroom at the Delta Edmonton South Hotel, and the sunlight fell in.

David spoke about the heart of nursing and care.  He stressed that the best nurses wear their hearts on their sleeves and don’t hide behind the mask of professionalism.  Sitting there in that room, I had a sudden realization.  I didn’t drop out of nursing 26 years ago because I was a bad nurse.  I wasn’t too soft to be a nurse, as I’ve always said.  A soft nurse is exactly the kind of nurse that the world needs.

The epiphanies in that ballroom continued.  David’s talk was about the Butterfly Homes for people with dementia in the UK.  He sprinkled his presentation with beautiful images and stories of humanity for the room packed with LPNs and health executives at the College of Licensed Practical Nurses’ Think Tank.

It was a relief to hear David talk.  He said it took a full 20 years for him to see culture change in the world of dementia care.  TWENTY YEARS.  (I’m 11 years in my preaching about compassion and love in health care, so I can now see the light flickering at the end of the tunnel).

He said 35 years ago, it was just him sitting at his kitchen table with an idea that things could be different in his workplace of dementia care.  Nobody was asking him to be a plenary speaker at conferences, and nobody wanted to publish his articles.  That has been 30 years in the making.  But he didn’t give up.  He spoke in terms of the uphill climb he took to be standing behind the podium in a room full of hundreds of health professionals, thousands of kilometres away from his home in the UK.

And what is the great change he referred to?  That care should be about people, not about profit.  He encouraged the nurses to be people first and nurses second at their workplaces.  He hires nurses in care homes who wear their hearts on their sleeves and are willing to share their personal stories.  He says that nurses should be attached professionals, not detached professionals.  And working in continuing care means becoming someone’s friend and becoming part of their family.

He wants nurses to cry with the people they care for, nurses who sing with them, nurses who share meals with them, and nurses who hug often and freely.

I was reminded of my own mom, a good nurse, who worked in a Veterans Home in the 1980’s.  I asked her recently what were her favourite memories of her time there.

‘Oh, I remember working evenings, and tucking the guys into bed, and kissing them good night on their forehead.  But I shouldn’t say that!  I would have gotten thrown out of nursing if anybody found that out.   Good thing I’m retired now,’ she said with a smile.

If that had been my grandpa at the Vet’s Home, I would take great heart in thinking that the nurses cared for him so much that they tucked him in bed and kissed him good night.  I want those kind of people caring for my loved ones when I cannot.  Nurses like my mom are the ones that need to be hired, celebrated, and nurtured.

My daughter Ella received notice that she’s been accepted into nursing school next September.  I’m so very proud of her, not only for her academic achievements to get into university, but also for her big open heart.  She’s the kind of nurse that we so desperately need.  I only hope she can protect herself, not from the people she cares for, but from a system that currently cares more about efficiencies than kindnesses.

The revolution that David Sheard spoke about is a revolution in compassion and love.  As his tag line says, feelings matter most.  And I believe that love always wins.  We cannot give up on these ideas.  It turns out that my mom (retired nurse) me (half a nurse) and my daughter (future nurse) are on the right path after all.




slow medicine

turtleMeghan O’Rourke wrote a brilliant article for The Atlantic (is there any other kind in that magazine?) called Doctors Tell All – and It’s Bad.

You know when you read something and you think: gosh, I wish I was talented enough to write that?  This is a manifesto for a return to compassion in the health system.

Meghan recounts her own experiences, ill and undiagnosed for ten years, and shares her perspective in her journey with her mom, who had metastatic cancer.

{And YES, the n=1 (or 2, in this case) counts. Stories matter. One person’s story matters}.

She describes the hospital experience as including physicians who were brusque and hostile, harsh lighting, noisy rooms and terrible food. Two years ago, when I was hospitalized overnight after complications from day surgery, all I wanted to do was to go home. The night-time was the worst. The woman beside me was moaning in pain, and the nurse who worked nights didn’t seem to believe that I needed pain medication. Call bells went unanswered, and I literally dragged myself along the floor in order to go to the bathroom. It was really bleak.  I begged to be discharged the next morning – I figured that the misery was the system’s way to keep the length of stay down.  The hospital (despite being shiny and brand new) was hardly a healing place.

Canadians can stop being all smug about our health care system. Yes, our inpatient costs are covered by our public system, but we spent a lot of money without a lot of return. We pay out of pocket for dental, optometry, pharmacy and rehab medicine services. Pile on top of that stories of long wait times, nightmares navigating the system (nightmares even finding our clinic room in vast hospital settings with no wayfinding), long waits for pathology (the 12 days I spent thinking I might have ovarian cancer were the longest in my life) PLUS crappy tales about health professionals who treat us with distain…well, my goodness, things are a bit of a mess, aren’t they?

O’Rourke’s piece confirms that physicians think so too. And while we might not have the managed care or HMOs like the US, there are many similarities. Appointments, particularly with specialists, are rushed. High powered, well-dressed efficiency consultants have marched in to pressure health professionals to shave seconds off of patient interactions to save time (and money).  Where’s the reward for kindness? There isn’t any.

Patients don’t have time and aren’t taught the advocacy skills to make sure all our questions are answered properly.  (Morgan Gleason, age 15, profoundly said:  “doctors go to medical school, but patients don’t go to patient school” – this is brilliant).  I feel for the overworked physicians, who are mostly on a fee-for-service structure for added pressure – for the more patients they see, especially the complex ones, the more they get paid.

And I’ve watched the friendly conversation between health professionals and patients fall by the wayside. That’s the first thing to go in the chase for more volume. I mean, how happy can physicians be in these situations? Surely this stress has to be transferred onto their patients (and the physicians’ own mental health, if you look at the suicide rates for doctors).  You can say the same for all health providers, not just physicians.

I preach that in the pursuit of efficiencies and time saving measures, we have cut out the compassion. Nobody gets paid to sit and hold that elderly lady’s hand in the ED until her family comes.

The solution?

Danielle Ofri quotes Frances Peabody, who tells the graduating medical class of 1925:

 “The secret of the care of the patient is in caring for the patient”

But why are the simple things so hard?

O’Rourke pines for a doctor who understands that conversation is as important as a prescription, a doctor who knows that healing is as important as the surgery.   Me too.

That brings us to Slow Medicine. I love the slow stuff. I saw Carl Honore last January speak at an autism conference, and that was the most important presentation I’ve been to in years. I write about slow here, here and here.

But Slow Medicine! O’Rourke introduces me to that term. I love it. Guess what that brings us: happier doctors and happier patients. Slow Medicine reminds physicians that it is a privilege to serve patients. As I like to say, health care is a noble profession. That needs to start being honoured and recognized by administrators and executives. Patients are not cars in a car factory.  Stop treating them like such.

My biggest take away in my presentations is also the simplest. It is a little acronym, KIDS, borrowed from Children’s Hospital of Philadelphia, that says:

Introduce yourself
Describe your role and what you are there to do
(And for goodness sakes, please, please, please…) Slow down

Slow medicine.  Slow health care. YES!  An idea whose time has come.





move towards the light


I oscillate wildly between feeling despondent and that there’s no hope for change in this world, and then feeling deeply thankful for what I have. I cannot figure out how to even out these emotions, except by recognizing them and accepting that they are true. As Anne Lamott’s son Sam said when he was young: “I think I understand about life:  pretty good, some problems.”

As I listened to Dr. Louis Francescutti’s presentation to health executives last week, I felt despondent about the state of our health system (and politics in my home province of Alberta in general). We’ve had the same government for 40 years, and having too much money has led to boatloads of entitlement, reams of wasted money and a lack of creativity or innovation. Why be creative when you can throw a bucketful of money at your problem and then walk away? That’s the Alberta way. Ugh.

I felt gross after that talk, mostly because what Dr. Lou said about the massive inefficiencies in the health system and an eroding sense of compassion from health professionals was true.

Then I stumbled upon an old article written about Darryl Sutter and his family. Darryl Sutter is, of course, the coach of the Stanley Cup winning LA Kings hockey team. He and his wife also happen to have a son with Down syndrome, Christopher, who is a young adult at age 21. Christopher is the exact same age as my oldest son (who also lives in LA) and ten years older than our youngest son, Aaron, who has Down syndrome too.

Often it is the families who are further along their journey that have the greatest insight, just by how they live their lives. Sutter talks about even during his nomadic time as a hockey coach, but how his family always came first. Sutter resigned from the Chicago Blackhawks so that Chris could live on the family farm, and then they moved to San Jose for his schooling, where services were robust for kids with Down syndrome. Back to the farm when he was older, and he had the freedom to ride his horse and tool around on the tractor. Now Chris is graduated from high school, and is in LA with his dad and family, where’s he’s involved with Special Olympics and the LA Kings hockey team.

I love this quote:

Darryl Sutter’s biggest triumph, though, has nothing to do with hockey. It’s the fact that, against massive odds, he and his wife have been able to raise a healthy, happy son.

Usually the term ‘healthy’ makes me shudder (I know so many families whose awesome kids wouldn’t be considered ‘healthy’), but in this case, I know what it means. Chris had heart surgery when he was a baby, and many medical interventions since. He’s as healthy as he can be – and that’s what health is really about, as the WHO says: “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” It is about well-being, not merely about not being sick.

I take heart in Christopher Sutter’s story. The Sutters talk about having a long-range plan for their son, based on what he wants to do. Aaron so desperately wants real friends and a girlfriend. We need to be in a community where he is accepted as a young man first, and divest ourselves of people who see him merely as a disability. He needs recreational opportunities, and decent year-round weather so he remains active. He needs access to the beach, which he dearly loves. He needs to have meaningful employment and be able to safely and independently travel back and forth to work, where he is recognized and known. This utopia doesn’t naturally exist. It is something we have to work hard to build for him.

The only thing that distracts me from the despondent is the grateful. The wisdom I learn from parents who have children who are older than mine is that we don’t have take on all the weight of changing the world. I have put in my time, and now I can move on. In fact, our greatest revenge in a society that is discriminatory and unjust is simply to live a good and happy life. And that’s what we are committed to do. Thank you, Sutter family, for your inspiration. It is now time for me to put down my battle axe and to move towards the light.

10 Ways Patient Engagement in Canada Smacks of Tokenism


Thinking of engaging patients in your health organization? Here are ten proven ways to engage patients in a tokenistic (and not meaningful) way.

1.  Invite patients to your focus group. I despise the term focus group.  These words imply that patients will be engaged once and only once, probably late in the process, and their suggestions will likely be discarded. Highly paid consultants with expensive shoes often facilitate these sessions. I also call this the tick box phenomenon.

SOLUTION: Invite patient representatives to regularly occurring meetings, not just one-shot focus groups. Strive to communicate updates with them regularly, and sincerely ask for feedback that you seriously consider and incorporate. (Engagement is not just one-way communication – it needs constant dialogue and collaboration).

2. Assume that staff who work for consumer organizations are patients. I call this the professionalism of patients, and I witnessed this in Australia when I was there three years ago. I sat on a patient panel of 5 people, where I was the lone patient. Everybody else was a paid staff member of a consumer organization.

SOLUTION: Consider the purity of the grassroots patient voice. Staff representing patients always have a bias towards their organization’s agenda.  Think about how you define ‘patients.’

3.  Have your corporate executives, clinicians and researchers speak on behalf of patients, or be the lone voice talking about patient engagement or patient centred care.

SOLUTION: Don’t do this. Ever. If you are doing this, stop it immediately. It is exceedingly insulting to all patients to speak for them and not make space for them to speak for themselves. This totally smacks of tokenism.  At the very least, consider partnering with a real patient in your patient experience presentation.

4.  Ask patients to over-volunteer. Have only a handful of patients that you continuously call upon, and expect them to show up at your organization for meetings numerous times a week.

SOLUTION: Your network of patient volunteers should be high in numbers so you have great capacity. Create sustainability in your volunteer pool by equitably sharing opportunities so patient reps don’t experience burnout or bitterness.  Consider going to the patients on their own turf – in their own homes and communities, and do not always expect them to come to you.

5.  Hire a paid patient representative to speak on behalf of all patients, in all forums. The n = 1 model of representation is not diverse. Having one person present to health audiences, be the patient voice on committees, speak on behalf of all patients, is just plain wrong.

SOLUTION: Having a paid patient staff member is awesome. But it should be that person’s role to engage more patients and build relationships, not to be the lone patient voice in the organization. This builds sustainability and allows for diverse perspectives.

6.  Host a Patient Engagement Conference without any patients. (YES THIS HAS HAPPENED). Or, fly in a celebrity patient speaker from another country to deliver the opening presentation and pat yourself on the back for being so darn patient centred.

SOLUTION: See #3. Nurture your local talent pool of patient speakers. Yes, this might take some work. But coaching and supporting patient speakers who have experience close to home will create a more relevant and engaging experience for your audience.

7.  Invite patient speakers to your conference or educational event. But don’t offer to pay for their time, expenses or registration. Pay all other speakers a fee and reimburse them for their time and expenses.

SOLUTION: Show patients that you value their time and wisdom as much as health professionals by not expecting them to be out of pocket for anything, and consider offering a reasonable fee to cover their time.

8.  Ask patients to sit on your Advisory Council, but when they have constructive feedback you don’t like, ignore that feedback, don’t address what they have to say, and silently pave the way for their bitter resignation.

SOLUTION: Patient reps aren’t cheerleaders. Expect to hear feedback that you don’t like, and respect that feedback by listening to it, responding to it, and collaboratively making a plan for how things will improve in the future.

9.  Invite patients to participate in your organization but expect them to show up on short notice, with no prep beforehand and no debrief afterwards. Give them an obscure room number and expect them to find their own way. Don’t pay for their parking. Don’t introduce them when they arrive in the room.

SOLUTION: Patients have families and lives. Give them lots of notice for meetings, and options to choose from so they can arrange childcare and take time off work. Patients are sometimes not well themselves. Plan for that by having a back up strategy (perhaps 2 patient reps, not just one). Extend courtesies to them. Pay for their parking. Meet them in the lobby and take them to the meeting room. Facilitate round table introductions when they get there. Take them for coffee afterwards to debrief.

10.  Patients are paraded in the ‘tell their story’ without any direction or coaching.

SOLUTION: Recognize that patients are sharing personal and intimate stories about their health with strangers. Honour the patient story by providing a listening ear, information about the audience, direction about key messages and tips about public speaking. Support patients for success, not for failure.


11.  Wait until your organization has all their ducks in a row before you engage patients.

SOLUTION:  You will never ever have all your ducks in a row.  (Patients know this reality better than anybody).  The time to meaningfully engage patients in your organization is now.

that cute thing

me, not really that cute.

me, not really that cute.

I have lost track of the number of times somebody has said to me about Aaron:  “oh, they are so happy all the time.”

I usually respond, “oh you should see when I’m trying to get him ready for school in the morning!” in a cheery, fake voice.

What I really should say is, “well, Aaron has the same range of emotions as you and I do.  He’s not happy all the time (and neither am I).  ps:  he isn’t a they.'”

Parenthood is hard work with any child.  Pile on top of that struggles with health and education systems and societal exclusion, some days I am just miserable and pissed off.  This is neither good nor bad.  It just is.  I also get mad at society for their judgement of my eldest son, who is a tattoo-filled drummer in a punk rock band.  There are many injustices in the world.  You don’t have to look hard to find them.

I like this blunt essay from David M. Perry about the dangers of generalizing about Down syndrome, called Down syndrome isn’t just cute.   Now that Aaron is 11, relying on ‘the cute’ doesn’t work anymore.  11 year old boys aren’t cute.  They are often-cranky pre-teens, intent on pushing away their parents as they strive for independence.  This is true for all 11 year old boys, Down syndrome or not. 

The one time I got heckled during a presentation was by a grizzled geneticist.  I was presenting, along with another mom, about the value of peer support when parents get a prenatal diagnosis of Down syndrome.  As our presentation went on with (admittedly cute) photos of our 3 and 6 year old kids, I could see him becoming more agitated in the back row.

Finally he burst out:  “What happens when they aren’t cute anymore?” and then went on a rather shocking rant about his skewed perception of the realities of having a child with a disability.  I thought to myself:  “Gosh, I bet this guy isn’t giving families a value-neutral diagnosis.”  (Value neutral means the information all isn’t good, and it all isn’t bad.  Such is life).  In retrospect, I should have shot back at him:  “Well, what happened when YOU weren’t cute anymore?”

David Perry reminded me of this altercation, and I have to admit, however, that this awful geneticist had a point.  All kids grow up and aren’t cute anymore.  If we are resting on our laurels of marketing the (admittedly) cute younger kids with Down syndrome, we aren’t doing the folks who aren’t considered cute any favours.

I stopped being cute at about age 7, when I had my ringlets cut off,  sported stop-sign shaped glasses and wore unfortunate scratchy red turtlenecks.  I also wasn’t happy all the time, particularly in my teenage years (just ask my mom).

Does this mean I was any less a person?   As Perry says, ‘what matters is our shared humanity’ – not assigning value to somebody based on how cute they are.   We are all just human beings after all, warts and all.