the ian brown effect

IMG_4342 I once saw Ian Brown speak at a pediatric health conference in Halifax.  He walked through his son Walker’s MRI appointment at a children’s hospital.  I admired how he clearly explained the absurdities of the hospital process and staff, including the last minute appointment rescheduling and the excruciating waiting room experience.

Ian Brown didn’t muzzle his words in fear of alienating the audience of health administrators, as I had done so many times in the past.  I was awed by his fearlessness and utter confidence – a contrast to me with my carefully crafted and inoffensive speaking notes.  I realized then that I was being so inoffensive that I often ended up saying nothing at all.

A couple of years later, I was asked to speak at a health professional conference in Banff.  I suddenly became obsessed with telling the truth.  I was a last minute substitution, the only ‘patient’ on a panel.  I showed up not representing anybody other than myself.  I don’t know why, but I made the decision to throw caution to the wind at this tony hotel built into a mountain, with its audience of well-dressed leaders and administrators.

Before I got up to speak, I remember sitting at a front table, my heart beating loudly in my throat, shaking with anxiety.  I finally took my place behind the podium, quaking in my sensible heels, took a deep breath, and scanned the serious crowd.   I decided to go for it.  I asked the audience to stop calling me ‘Mom’ and my son ‘Buddy.’  I suggested that all clinicians should make eye contact unless they are gynecologists or urologists.  I asked them to stop barging into patient rooms without introducing themselves, and stop taking away patients’ clothes and stripping us of all our dignity.  I advised to stop calling my son a ‘Down’s boy’ when he was in fact a boy who happened to have Down syndrome, and to quit using the terms ‘burden’ or ‘suffering’ when you talk about my child.  I noted that patients and families are well-aware that the health system isn’t perfect, because we sit in Emergency Department waiting rooms or beside our children’s inpatient beds for hours at a time and observe the staff very very closely.

Later, on the panel, I became enraged by the blatant professional infighting between clinicians (Specialist v. Family Physicians, Family Physicians v. Nurse Practioners, Nurse Practioners v. RNs, RNs v. LPNs, etc), and pleaded with them to play nicely in the sandbox for the sake of patient safety and care.  I don’t think the moderator cared for me, but for once in my life, I didn’t give a hoot.

I borrowed my gumption from Ian Brown.  For the first time, I focused more on the messages that I was sharing rather than obsessing if the audience liked me or not. After my talk, I had a line-up of folks wanting to speak to me.  I have had many subsequent speaking opportunities and relationships that grew out of that one presentation in Banff.  Great presentations use passion, humour and emotion.  It was the first time I had presented in a totally authentic way.  I didn’t read from an organization’s speaking notes, or talk generically about the patient centred care philosophy.  That presentation could have bombed, and it did take a few slides for that tough audience to warm up to me.  While I used humour and storytelling to soften my messages, I basically just got up and was myself – Sue Robins:  writer & mama bear.

I’ve since figured out that health audiences want to hear the truth about the patient experience.  (Preferably from patients themselves, but that’s another blogpost).

I’ve followed Ian Brown carefully since then.  Like many others in the disability community, I devoured his book The Boy in the Moon, and read his essays about Walker in the Globe and Mail.  I’ve watched his Holland Bloorview Kids Rehab Hospital talk and read his essay published on Bloom, called The Absence of Normal Frees Us.

Last week, a friend alerted me to Ian Brown’s latest essay in the Walrus Magazine, called ‘Facing Difference: Down syndrome in the age of prenatal testing.’  Now, my youngest son has Down syndrome, so I’m naturally predisposed to this topic.  I’ve spoken in the media about prenatal testing before, and I stumble about, trying to articulate my thoughts on a heated subject. In about 600 words, Ian Brown, with his talent and insight, expresses what I’ve been trying to say for years.  What do I think about prenatal testing?  Here’s the answer:

The answer is that the fragile and flawed among us may be crucial, as Charles Darwin thought, to our ethical survival as a species, to make us more subtle, more watchful, more compassionate and less judgmental.  That is a revolutionary idea, but then disability is inherently radical, lived in defiance of the so-called ordinary. – Ian Brown, The Walrus, page 42, May 2014.

Beautiful.  Eloquent.  And true.   What would happen if we all borrowed from Ian Brown and found opportunities to tell our truths?  I think we’d slowly start to come out of the shadows, and stop being Invisible Moms.  For change is never going to come from our continued silence.

what are you most afraid of?

Oh my goodness, this video about An and Ria’s first airplane flight is truly delightful.  It reminds us that the rewards are great if we dare to do the things that we are most afraid of.  And as An’s husband says, “You can do so much more than you think.”  My own grandma climbed on a plane at age 60-something for a her very first flight, which was to Australia.  Talk about starting with a bang!

I’ve been thinking of the things that have terrified me over the years:   Water.  Long airplane flights.  Roller coasters.  Public speaking.  I try to address these fears head on, and have not always been successful.  I can snorkel, but only in shallow water.  I will go on a boat, but I’d never go water-skiing.  I flew to Australia, but only with the help of sleeping medication.  I have been on kiddy roller coasters, but still fear the big ones.  I swore I would never public speak, and now that’s part of what I do for a living.

There are many other things I fear:  Conflict.  Rats.  Internet comments.  Downhill skiing.  Team sports of any type.  Not being able to touch the bottom of the pool.  I’m pretty good at avoiding any situation that puts me to face to face with these fears.

If An and Ria can climb onboard a plane for the very first time at age 70-something, well what kinds of things can you do, too?

Marianne-Williamson-Framed-Quote-102

 

 

“I am who I am”

Slide1Do people with differences want to be cured?

So asked Andrew Solomon in his recent talk at the Richard Gidney Seminar on Faith and Medicine in Toronto.  There’s a very well-written summary of his talk by Stuart Mann on the Diocese of Toronto website.

There are many things I love about Andrew Solomon’s words.  I recommend his book Far from the Tree to all parents I know.  As I’ve discovered with my eldest son, it isn’t just children with disabilities who fall far from their parents’ tree.  It can be ‘typical’ children too.  My own philosophy is that we should encourage all children to fall far from our trees.  For typical kids, we might have to create opportunities for this to happen, so they don’t end up as mini-me versions of ourselves.  For children who have differences, this fall from the tree has already happened, sometimes even at conception.

I’m fascinated by Andrew Solomon’s thoughts around curing people with differences.  This is tied closely to his assertion that love and acceptance are two different things.  How many children grow up believing they weren’t loved, because their parents (who probably did actually love them) did not express that love in a demonstrable way?  And how many of us feel that our parents truly accepted us, with warts and all?

For children with disabilities, this gets even more complicated.  We often race around trying to ‘fix’ our children so they are ‘more normal.’  This might be done from a place of love, to help them avoid the pain of being different in society. (Or our own pain of having a child with differences). But is this acceptance?  I think not.  Every single cell in my son’s body has an extra chromosome.  If I took that 21st chromosome away, he would be an entirely different person.  Here’s the quote about curing from Andrew Solomon from his talk:

“There’s the question of whether people want to be cured or whether they feel their condition defines them and they don’t want to be cured,” he said. “A person with autism told me, ‘When parents say, ‘I wish my child did not have autism,’ what they’re really saying is that they wish the autistic child they had did not exist, that I had a different, non-autistic child instead. This is what we hear when you mourn over our existence. This is what we know when you pray for a cure, that you’re fondest wish is that someday we will cease to be and a stranger you can love will move in behind our faces.’ That’s an extreme point of view, but it was shared by many of the people I talked to. They said I am who I am. I have come to have an understanding of myself as who I am, and I am just as human as anyone else.”

This statement is so very profound to me.  If Aaron didn’t have Down syndrome, he would indeed cease to exist.  And since Down syndrome encompasses a facial difference, Aaron would not even look the same.  He would be another person entirely.

As I progress along my journey as Aaron’s mom, I’ve realized accepting Aaron includes his Down syndrome, means loving, accepting and yes, embracing and celebrating every bit of him, even the bits that make him so different from me.  That includes the parts that are typical 11 year old boy (his love of Minecraft and sports) and the parts that perhaps belong to his 21st chromosome, too (his behaviours, often called non-compliant by others, his challenging speech).  Accepting him means helping him embrace, celebrate and own his own identity, too.

I once read an (unattributed) quote from a dad, which spoke to me too.

He said:  when my child was first born, I wanted to my son to change to be accepted in the world.  Then I wanted the world to change to accept my son.  Now I know it that I am the person who has to change to accept my son.

And amen to that.

put that supermom cape away

IMG_4222

Every few months, I need a break from the advocating, lobbying, educating, motivating and inspiring.  A wise woman once said to me:  you know, sometimes you can fold up your Supermom cape and put it away.

This is brilliant advice for two reasons.

One, all ‘special needs parents’ need to rest from the heavy work of changing the world.

And two, let me not view myself in such high regard that I think I’m the only one who is capable of changing the world.  Many many others are chipping away at this important work – this is not my sole responsibility.  It is humbling to regularly remember that it isn’t all about me.

The break from being a ‘special needs mom’ is not a break from my ‘child with special needs.’  It is a break from society, systems and the small minded.

So I fold up my cape, and pack up my kids and board a flight to the west coast.

We disembark in the land of the lapping ocean and shadowy mountains. Our generous extended family fetes and feeds us.  We eat fish and chips at the wharf and meander around the bobbing boats at the marina.  Aaron chooses what yacht he’s going to buy for his girlfriend.  We amble through a hidden community garden on the abandoned train tracks.  We carefully examine every single exhibit at Science World and admire the views from the top of a mountain.  We gobble up corned beef hash at a breakfast joint with my daughter and her boyfriend.

We walk laps around the ferry, challenge each other to racing games at the video arcade and hold our hats on the windy deck.

My mom and dad take us to secret island places.  We visit the barking sea lions and chat with the goats at Coombs.  We shriek when we touch the sea cucumbers at the marine field station.  We turn over rocks to find scattering crabs.  We use binoculars to spot thousands of gulls feasting on herring eggs with Pappa Neil at the estuary.

We read chapter books at bedtime, and lounge in bed for a long time before we get up.  We eat pho and Nanaimo bars and lay on the floor while our one year old cousin and niece scampers over us.

All this is done on Aaron slow time, with no heed to clocks or schedules or meetings or the damn Internet.

Let’s give each other permission to fold up that Supermom cape and hide it in the back of the closet.  Sometimes we need to relax into these small moments with our kids, and leave the changing the world business to someone else.

 

my grandma

IMG_4145

My daughter Ella and her great grandma.

My grandma was bright, quick-witted and charming.  She was also an elegant, tall, stunning beauty.  My grandma was a mom to two, a grandma to four and a great-grandma to four.  How fortunate for us to have her in our lives all these years. She was much beloved to her family and friends.

My grandma possessed an amazing long term memory and was an engaging teller of stories, remembering every fine detail, even fifty years after the fact.  She was always impeccably put together, and had an eye for the finer things in life.  Grandma could sniff out a good shoe sale from many miles away.  Grandma was a talker on the phone, a lover of animals, a reader of books, and a great baker of bread.

My grandma had the good fortune to have two great loves of her life:  Frankie, my grandpa, who left her a young widow at age 27, and then my other grandpa Joe, who passed away 18 years ago.  I know she missed them both terribly.  May she meet up with them in heaven – they will surely be both vying for her attention.

I will never forget my grandma’s reaction when I called her to share the news that our youngest son had been diagnosed with Down syndrome.  She said to me, ‘Oh my goodness, well of course I will love him no matter what.’  And love him she did – she had an infinite amount of patience for her young great-grandchild.  She said to me:  ‘it is my one regret that I worried so much about how clean the floor was when your mother was little.’  She instead took great delight in all her grandchildren and great-grandchildren – writing us long handwritten letters, pressing cash in our hands for gas money, buying us thoughtful gifts, teaching us to bake, stocking the fridge with our favourite foods, and feeding us messy chocolates.

Most of all, my grandma was the most gracious person I have ever known.  She would never fail to ask folks how they were doing, recalling details of their lives, and be concerned that everybody ate and slept well, even in her later years as her memory and health started to fail her.   She was the very definition of grace.  I can only hope that I inherited even a fraction of her kindness and generosity.  I think we need more people like my grandma in this world.

I love you so very much, Grandma, and will miss you so very much, too.  I trust that my cherished memories of you will see me through.  xoxo

Late Fragment
-Raymond Carver

And did you get what
You wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to
Feel myself
Beloved on the earth.

who speaks for patients, anyhow?

Who speaks for patients?  Patients do.

I’m happy to see the surge of patient experience and patient centred care themed conferences around Canada.  This is a good start.

But theming a conference as patient centred is not enough.  This is only the first step in the evolution of inviting the patient voice to share experiences and provide feedback to health professionals.

Many of these conferences have health professionals, researchers or administrators speaking about patient centred care. Or they don their but everybody is a patient hat and talk on behalf of patients.

There is sad irony about having professionals speak on behalf of patients at a patient centred care conference. Patient centred care is about doing things with us, not to us or for us.

I understand why conference organizers bring in health professionals who have had experience as a patient to speak. These speakers are colleagues of the audience members, and are likely seen as less threatening than a layperson patient speaker.  But I think the idea of using a patient speaker who is not a health professional is a bold one.

If we move along the evolution, a layperson patient speaker is asked to present.  Finally we are starting to model patient centred care.  (Even better?  At Canadian conferences, patient speakers have local Canadian context).

The different kinds of speaking spots offer varying levels of involvement, too:  from speaking as a panel member, to a break-out session, to opening or closing a conference.

Normally, an opening plenary session is the most prestigious of all speaking spots.  But I think if you are truly going to model patient centred care, this spot is not occupied by a lone patient speaker.  Instead, the patient speaker co-presents with a health professional. They don’t present two separate presentations; they spend time preparing a collaborative presentation. They truly share the podium.

And if you add a patient representative on your conference organizing committee?   Voila: you have full-blown patient collaboration.  And then you are walking the walk, folks.

I have created this handy The Ten Levels of Health Conference Evolution table that health conference organizers can use as reference:

Slide1

 

in the depth of winter

In-the-depth-of-winter

I have a not-so-secret obsession with Oprah Magazine.  The writing is very good.  I’m sure fit their main demographic profile:  female, 40-something, mom with older children, searching for the meaning of life.

The April issue has a feature called 20 Questions Every Woman Should Ask Herself Today.  I read the answer to question #14, Am I Strong Enough, by poet Brenda Shaughnessy and broke wide open and wept, hard. Here’s an excerpt from it:

People are always complimenting parents of children with special needs for being amazingly strong. But it doesn’t take strength to love your child.  It’s the other way around:  love gives you resilience.  

When I tend to my disabled child’s medical needs, I’m simply being a mom, caring for my son.  Strength means honoring your entire range of emotion, even your despair and heartbreak.  Especially your despair and heartbreak.  It means acknowledging each of those feelings, your questions and ideas and faith and terror, and meeting what comes with the full force of your heart.  

There is no such thing as a perfect child.  Most parents discover that gradually, as their children sprout up to reveal their true selves.  In the midst of the stormy teenage years, we become well aware that our ‘perfect’ child is no longer perfect – in fact, they are flawed and beautiful human beings, just like us.

When you have a child with a disability, this perfect child lesson is swift and sudden.  Sometimes we even learn this stark fact when we are still reeling from giving birth.  There are no years to gradually become accustomed to the reality of the imperfect child.   We are handed mere seconds.  This is the root of our despair and heartbreak.

I can promise you that the love will save you.  The well of pain is deep.  But that well of love is deeper than you ever imagined, and you will dip into it, over and over, for your child with the disability, and for all your other children, too.  Love will get you through those dark cold winter nights.  Because don’t ever forget – love always wins.

his life was a good thing in this world

My dear friend’s son was born stillborn in Winnipeg many years ago.  If he had lived, he would have been 14 years old.  I wrote a piece for Chatelaine about supporting a grieving friend in 2002, called Put your hand in her hand.

I learned a lot about how to be a good friend:  including listening, showing up, and talking about her baby boy and using his name.  I also learned that I could provide no comfort that would take away her grief.  It was hers and hers alone to navigate.

I have never experienced a pregnancy loss.  I do know that miscarriages and babies born still happen a lot, but it is rarely spoken about.

The Global Alliance to Prevent Prematurity and Stillbirth has created a beautiful and sad video, with parents sharing their thoughts about losing a baby.  I wish that all health professionals who work with expectant mothers would watch this, and that it is shared with parents who are grieving a baby, so they know that they are not alone.   Born in Silence offers a powerful perspective from mothers and fathers who have experienced the death of their baby.

“His life was a good thing in this world.”

the thank you project

gratitude-unlocks-the-fullness-of-life

Recently I spent a lovely morning chatting with three Emergency nurses about why they love their jobs, and how they make a difference in patients’ lives.   They were champions in the field of nursing.  They each expressed how they never forgot how every patient is somebody’s grandma, or father, or child.  These nurses were true compassionate professionals, who, in the Emergency Department, see us patients at our very worst.

I asked them if patients ever said thank you.  “Oh yes,” they said, “They sometimes say thank you when they are leaving, or I even get a hug.”  I could tell that these expressions of gratitude were so important for them to fuel a very demanding job.

I asked if they ever got written thank you notes.  They said that this happens only rarely, and patients often send in more general notes, saying, ‘thank you to the staff’, but don’t mention the name or specific actions they are grateful for.

As a fierce advocate for my son, I’m quick to express a (hopefully constructive) complaint for things gone awry.  It got me thinking:  do I say thank you as much as I give negative feedback?

Here’s my call to action for patients and families:

Think of the last time a health professional made a difference in your life.  Did they express that they cared, or demonstrated a kindness?

Here’s what I’d love for you to do:

  • Write them a thank you note, naming them specifically, and describing exactly what they did, and how it made you feel.
  • Dig up an address and send it to them and copy their manager.  I’m a big fan of handwritten thank you cards, but emails work too.
  • If you don’t know specific names, sometimes managers can track people down by descriptions or through information about date/time of day.  For managers, even ‘Emergency Department Manager’ will get to the right place.  You can also submit through the hospital’s patient relations department, but to be truthful, I worry that the staff never end up receiving the feedback.  Sending to them and their direct manager is best.
  • Vow to get in the habit of sending a thank you after every interaction in the health setting. (Well, that’s if they are sincere – if you think back, there is hopefully at least one act of kindness that you can recognize).

This can be for health professionals, reception staff, the lady that works in the cafeteria, or the person who helped you when you were lost in the hallway.  I know nurturing an attitude of gratitude makes me feel great – when I both express gratitude and receive it.

I just wrote three thank you cards to the nurses who generously shared their time and stories with me.  It felt good.  Taking the time to write that note will make more of a difference than you can even imagine.