on hecklers…

Slide11

Folks, I’ve been humbled again.   Feeling confident that you have everything figured out? Life has a way of unexpectedly knocking you off your pedestal.

I’ve been heckled three times in my speaking career. Once was in 1995 when I was working for the Alberta Health and presenting a new funding formula to a physician group in Lethbridge. The doctors were very angry about the new formula. I remember telling my co-presenter afterwards – gosh, I wish you had thrown your coat over me and escorted me off the stage. It was that bad.

The second time was about ten years ago. Another mom and I were presenting to genetics clinic staff about the value of peer support for parents who have a baby or baby-to-be with a new diagnosis of Down syndrome. We were showing photos of our kids, who were 3 and 6 at the time.

A geneticist got up in the back of the room and said, “what happens when your kids aren’t so cute anymore?” Both us speakers stood there, frozen and horrified. This was a man who disclosed prenatal diagnosis of Down syndrome to families. Afterwards, how I wish I had retorted: “what happened to you when you weren’t so cute anymore?” But alas, I don’t think very quickly on my feet.

The third time I was heckled was this morning. I flew to Edmonton to speak at an Emergency Department conference. My messages were about kindness and compassion in health care, and how the little things mean a lot to patients and families.

The stop sign above was part of my ‘Seven things that mean a lot to patients’ theme. I talked about the stress of finding parking, and the anxiety associated with the Emergency waiting room, and this big stop sign that awaits patients when they first walk in the door. I asked – why not try to provide a little comfort to patients so they aren’t so stressed out and angry when they arrive? Less agitated patients would help health professionals too.  Why not show a ‘welcome’ sign in a few different languages instead?

My heckler took great issue with my thoughts on the stop sign. He felt that patients should be told to stop and wash their hands and that patients thought that the ‘H’ on hospital meant hotel, and how he didn’t have time for that.

He went on and on about how awful patients were and now it is all a blur to me as I stood there swallowing back my tears. Other people chimed in about how demanding patients were, and I realized, in horror, how awful the Emergency experience must be here in Alberta for both patients and staff. One nurse actually said: I treat patients the way they treat me. If they are mean to me, I’m mean right back.

I had no response to this welling hostility. I needed someone to throw a coat over my head and escort me off the stage, but nobody did. Finally a young nurse put up her hand and was handed the microphone: “Thank you for your talk, she said quietly. I learned some things that I could do better at work. I’m going to try to slow down and not rush so much.” Thank you I croaked out to her, grateful for her bravery to speak up.

Gosh, there are so many lessons here.

  1. Patient speakers are sharing their stories and allowing themselves to be very vulnerable. Audience members, please respect that. Patient speakers, please protect your hearts and be aware that things can go sideways. I had obviously forgotten that – the aggression that came at me felt like a slap.
  1. Patient speakers, not everybody will agree with your message, and that’s ok. Let’s take this as a learning opportunity. At least I sparked dialogue, right? Right?
  1. Organizers, please assess your audience carefully. If your audience is hostile to hearing the patient experience, perhaps consider waiting to invite a speaker until the environment is less adversarial.

The fact is when I stand on a stage behind a microphone, I should accept the risk that comes along with that. (Why do you think that rational people shy away from public speaking?!). Maybe I have been given a free pass up until now because I generally talk to engaged audiences who are open to hearing about love and compassion. I’ve spoken at least 50 times since I’ve begun this work – so two hecklers out of 50 isn’t that bad.

I’m going to take a little rest now from trying to change the world, and focus on what’s important: the people I love.  I’ll be on a speaking hiatus until further notice.

a hospital stay in pictures

who decided we needed first-hand experience at BC Children's Hospital?  Whomever/whatever gave Aaron pneumonia.

Who decided we needed first-hand experience at BC Children’s Hospital? Whomever/whatever gave Aaron pneumonia.

three nights at the hospital.  here is aaron's awesome student nurse, gillian.  he inhaled A LOT of ventolin.

Three nights at the hospital. Here is Aaron’s awesome student nurse, Gillian. She was the best.  He inhaled A LOT of ventolin.

aaron refused to eat.  he told me, 'hospital food is disgusting'.  this picture proves his point.

Aaron refused to eat. he told me, ‘hospital food is disgusting’. This picture proves his point.

his oxygen ranged wildly from 81 to 98.  when he was closer to 98, they started talking about going home.

His oxygen ranged wildly from 81 to 98. When he was closer to 98, they started talking about going home.

feeling better!  discharged friday - lethargic weekend, but dfei

I was SO relieved to have Aaron talking and laughing again.  As Anne Lamott says, there are two prayers:  help me help me help me & thank you thank you thank you. I am feeling very grateful for the care & caring he received. Thank you.

the zombie mom

zombiemom

I had the opportunity to experience the pediatric health system in British Columbia first hand this past week, as our boy was admitted to the hospital with pneumonia.  He was discharged yesterday, and I’m still processing the whole experience.  The main thing that matters is that NOW HE IS WELL.  I am very very grateful to the staff and physicians for their hand in that.

In my presentations, I always say that I’m not always the best partner in care because I’m a zombie in the hospital:  sleep deprived, coffee deprived, hungry and whacked out by stress and worry about my kid.  I also wore the same clothes for three days straight. (And also slept in them).  I had the wherewithal to ask my husband to take a photo of me outside Aaron’s room yesterday – so here’s a rare sighting of The Zombie Mom In Her Hospital State.

for the crappy days

beautyThis quote is from a woman named Lisa Bonchek Adams, who was my age, a writer and a mom.  She shared her wisdom and heart with the Internet during her time living with breast cancer.  She died on March 6, 2015.  When I am having a crappy day, I reflect back on her words:  written by a gracious beautiful woman who left this Earth far too soon.

There is beauty everywhere.  It is our challenge to look for it when it is difficult to find.  Thank you for this reminder, Lisa.  We will carry on.

choose hope over fear

hopeIn my work in the world of family centred care, I am propelled by an engine of hope.  My first inkling that hope is better than fear was my experience in 2008 campaigning for Obama, which had a profound effect on me.  It taught me that people desperately want to believe in hope.  If hope is your message, and you never ever ever give up, no matter how many times you are dismissed and ignored and ridiculed, you will eventually break through.

And that is what happened in my home province of Alberta last night.  The people have spoken and they have chosen hope over fear.  Congratulations, my friends.  xo.

the significance of street hockey

street hockeyI posted this blurry photo – taken through our kitchen window – all over Instagram and Facebook yesterday.  The quality of the photo isn’t impressive, nor is the messy cropping of our vehicle parked in our driveway.

The significant part of this picture is the kid in the middle.  That’s my kid.  Playing street hockey.  On the street with the neighbour kids.  Aaron is 12 years old and this is the first time in his life that the neighbourhood kids have invited him outside to play.

I realized after I plastered my joy about this all over the Internet that those with typically-developing kids might think I’m daft, or those with kids with differences might think I’m bragging.  Maybe both are true.

I’ll explain the importance of this photo to us.

I’ve written before about my son with Down syndrome’s struggle socially with birthday party and play dates.

Last month, we moved to Vancouver.  We happen to find a house rental in a cul-de-sac.  After we moved in, I spotted a kid about Aaron’s age doing a science experiment on the driveway two doors down.  I summoned up my courage and went over and introduced myself.
Turns out this was an interesting kid – he was very social and knowledgeable about all our neighbours.  He was excited about having another kid on the street.  He ran inside to get his mom to introduce us.  I didn’t have Aaron with me, but I did tell his mom he had Down syndrome.  I don’t know if I should have. I felt like I should just cough it up.  I told the kid – he just learns differently and moves a bit slower.  The kid shrugged, ok he said, unconcerned.

A few days later, we drove up to our street, and this kid and his sister were out playing street hockey.  Hi Aaron they yelled as we pulled up. Aaron excitedly dug around for his hockey stick in the boxes in our garage and disappeared outside.  Be careful of cars! I shouted.  I tried to spy on him, but the abundance of trees didn’t help with my surveillance activities.  I could hear the slap of the sticks and kids shouting.  I left him alone.  Later, I peeked outside and saw the kids helping Aaron on with the goalie pads.

My son came back 20 minutes later, flushed and smiling.  How was it? I said.  Good, he said, a man of few words, but I could tell he was secretly pleased.

Then our neighbour’s dad put up a basketball hoop in their driveway.  The next day Aaron disappeared for half an hour with his basketball. The action continued, every few days, when it wasn’t raining – street hockey, then basketball.  Last night there were even a bunch of extra kids with Aaron rummaging around our garage looking for more hockey sticks.

My heart is about to burst.  I feel silly that I’m so excited about something that happens naturally for most kids.  I feel great empathy for other families whose kids do not get these invitations (believe me, that was me about six weeks ago). I feel that pain – it is fresh and it is real and it is deep.  I realize that ALL kids should be invited to go outside and play with the neighbourhood kids, but this is not necessarily our reality.  

There are a few stars that have aligned in Vancouver:

  • We live in a cul-de-sac.  Not much traffic.  Lends itself to impromptu sports on the street. This would be impossible in a busier thoroughfare.
  • Social kid two doors down who is happy to have an extra kid on the street to play with.
  • Vancouver area has not killed the community school model.  Meaning that all the kids from one neighbourhood go to the same school.  Their parents are not driving them to far-flung schools to go to a special arts, academic or sports program.  This means the kids in the neighbourhood actually know each other.
  • No special ed schools.  Meaning ALL the kids, of ALL abilities go to their local schools. Our neighbour kid is used to all sorts of kids in his classroom.  That’s why his reaction when I mentioned the Down syndrome is shrug.  There is a kid who is blind in the school. Another kid with Down syndrome.  A few kids with autism.  They all belong in their local school just by the fact that they live in the neighbourhood.  The school has to figure out how to support and educate all kids with all sorts of diverse learning styles – as there is no ‘opt-out’ option of a segregated site.

I’m both thrilled that Aaron is included and sad that it has taken 12 years for this to happen. I had pretty much given up.  There are of course other ways to find friendships for our kids – we signed Aaron up for adapted recreation activities and Special Olympics, and fostered friendships for him with kids we know in our disability world.  There are other options to make friends if kids aren’t banging on your door, asking your kid to come out and play.  But I hope one day soon in the future, all our kids will be naturally included in this kind of play.   I strongly believe that the world will be a better place when everybody finally belongs.

connection to other families

Me & Aaron & one of my best mom friends - 12 years ago!

Me & Aaron & one of my best mom friends – 12 years ago!

I’ve ranted and now it is time to get constructive.  Instead of hand-wringing about all silos in the worlds of health, education and social services, I’d like to propose some simple solutions to actually do something about it.  This is meant for professionals, people trying to help families and families themselves.

My first suggestion:
Connection with other families. If you know of families who have a new diagnosis, or who are new to an area, please find a way to connect us up with other families in our world.

Here’s a story:  A lovely soul at my work introduced me via email with another mom who lives in our neighbourhood and who also has a child with a disability.  We arranged a coffee date to meet at our local Starbucks.

I’ve been living here for two months, and I’ve had contact with many providers, professionals, specialists and coordinators.   This mom shared more helpful and comprehensive information in the first few minutes of our conversation than I had acquired in many hours of reading websites, looking at pamphlets and calling/emailing/meeting with professionals.

Her son is seven years older than Aaron, but this didn’t matter.  In fact, it was very useful to talk to another family member who was further down the road on their journey.  Here’s what was astounding to me:  it took us a full 15 minutes to realize our kids have a different diagnosis.  When she mentioned the Canucks Autism Network, I’m like: Oh, they have programs for kids with Down syndrome, too?  And she’s like:  Oh, your son has Down syndrome?  Mine has autism.  And we laughed and marvelled that IT DOES NOT MATTER what our kids’ diagnoses are:  our journeys are almost exactly the same.  Do not think that you have to connect one family up with one diagnosis with another family with the same diagnosis.  Our truths transcend diagnoses.

She gave me a carefully typed up sheet of contact information about who to call to set up services.  It flew right over the health, education, social services and recreation silos.  She told me the most helpful of all the agencies, and even called her contact there for me the next day to follow up on an email I sent about summer camps.

We chatted animatedly for an hour.  She said:  it will get better.  In fact, I left that meeting feeling a whole lot better.  I would figure this mess out because she had figured this mess out before me.  I was feeling hopeful (she had shared how her son took the bus to work, and I loved that insight into the future). I could email her anytime if I got stuck.  She was kind and generous.  I was a complete stranger to her and she dedicated her afternoon to me.  I didn’t have to have a doctor’s note proving my kid had a disability.  I didn’t have to sit there for two hours convincing her I required support.  I needed help and she helped me.  That was enough.

That’s the power of families.  Please please find opportunities to connect us families together.  It can be difficult to find these connections ourselves.  For instance, even though are other families with kids with support at school, I haven’t met even one of them yet – I’m not sure how to run up to a mom in the hallway at school and ask her:  Hey, does your kid have a disability?  #awkward

Us families support each other by sharing our lived experiences – this is something that health/education/other professionals – however well-meaning – can never do.  Step #1 to tackling daunting silos?  Connect us families up.  Together, we are stronger.