reflections on reflective practice

story book

Look at this beautiful book of stories.  This was gifted to me by folks who work at a disability agency. They were a recent client of mine.

I was on an eight-month contract to do an assessment of the level of the family engagement at the organization. I had conversations with families, staff and partners about ideas to better support young families as they navigated the minefield of systems when their child is first diagnosed with a disability or delay.

This is all fancy-sounding talk for I went for coffee with lots of people and listened carefully to what they had to say. Everybody spoke in stories. Then I compiled their ideas and put them in a report along with recommendations for positive change. I was merely a vessel for their stories.

When I started in the family centred care field a dozen years ago in a children’s hospital, I only thought of stories in terms of the family and youth stories. I learned that professionals have a need to tell their stories too. For stories are what make us all human. In fact, stories are how we communicate about ourselves. We don’t refer to ourselves in terms of data or numbers. We use words (or photographs or visual art or dance or music or film…) to share pieces of ourselves with others.

I finally figured out that staff engagement and family engagement need to happen at the same time. You cannot have one without the other. That means that staff must have a safe place to tell their stories too. If they don’t, they sometimes hang onto their own stories in unhealthy ways and this can interfere with demonstrating empathy and providing compassionate care or service.  Telling your story can set you free.

In health care, sharing stories happens in what is called reflective practice. In my layperson terms, reflective practice is sharing a story about something that happened, figuring out what you learned from it and making a plan to do things different next time. Sadly, reflective practice is rarely a priority in overly busy and frantic workplaces. Being still and simply listening to each other is becoming a lost art. Let’s start a movement to bring it back.

Reflective practice can be adapted to any kind of work environment. Facilitating reflective practice sessions with those in caring professions is one of my favourite things to do.

I start easy with icebreakers, asking round table questions like: what’s the story behind your name? Once trust is established within a group, we work up to sharing stories about the stories behind why they chose their profession. These types of stories really get to the heart of why people do what they do. Colleagues find out full ‘origin’ stories that go beyond where their workmates went to university. Pieces of hearts are slowly shared.

This can lead into facilitated conversations about what are their challenges working with patients or clients or families. I don’t offer solutions. I listen carefully and sometimes reframe questions. Sometimes I’ll tell a bit of my own story as a mom of a disabled child or as a cancer patient to provide a different perspective. Often someone else in the group has a good idea to share with their colleagues. Many times people know the answer to their challenges in their own hearts. Sometimes people just need a bit of space to unlock it.

There are many other formal ways to nurture storytelling and reflective practice. Schwartz Rounds is an example of reflective practice in action.  Dr. Rita Charon’s Narrative Medicine movement uses the power of art for clinicians to share their stories. On Twitter, Dr. Colleen Farrell created #medhumchat, which is, “reflection, empathy, & connection in healthcare through discussions of poetry & prose.” You don’t have to be a physician to borrow some of these good ideas for your own workplace.

Everybody has a story. And everybody has to look after their own hearts so they can look after the hearts of others. This is where compassion is born.

Stories are complex creatures. Here are a few of my tips about storytelling in the professional realm:

  1. Keep it real. There is a fine balance between cheerleading and complaining. I try to share a positive story, then if I have a negative story, I always suggest what could have made it better. Constructive and authentic stories help lift morale and give a sense of hope.
  2. In groups, listen more than you talk. Check your own judgment and be as open-hearted as you can when listening to another’s story.Health care and human services are about serving others, so…
  3. Be careful of getting stuck in your own story. Sometimes your own story can overshadow or diminish the importance of the stories of the people you serve.
  4. A grief counsellor once told me: It is okay for people to have their story. And for you to have your story and for those two stories to be different.
  5. Be wary of comparing or minimizing stories. As someone once famously said: this isn’t the Olympics of suffering.
  6. Don’t steal other people’s stories for your own gain – especially people who have less power than you. (There are many authors who are guilty of this).
  7. Please don’t ignore other patient stories if you yourself become a patient. Share the stage and your microphone with others. Nobody’s story is more important than someone else’s, no matter their title or position.
  8. The only person you can represent with your story is your own fine self. Be mindful about speaking on behalf of others. (As a mother, I’ve been guilty of speaking on behalf of my children – especially my son who has an intellectual disability. I’ve been working hard to support him to share his own story instead).

It is always an honour for me to bear witness to someone’s story. I wish for more safe places where all kinds of people are guided to share their story.  In the telling comes the healing.  And we all need healing in our own ways.

this is not just a cute story

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John and Mark Cronin

Today my son Aaron and I attended a presentation by Mark and John Cronin at the Down Syndrome Research Foundation.  This father and son team are the founders of John’s Crazy Socks. They shared wisdom about being entrepreneurs, running a business and championing inclusive employment.

I’ve been to a lot of talks in my time and have grown leery of those peddling cheery inspirational messages.  Mark and John’s talk was not like that at all.  Their words were exceptional in their realness.  Their story about their successful business was authentic and engaging.  It went way way beyond the inspirational realm – they moved me to think hard.   John’s Crazy Socks was born from a dark time, when Mark lost his job at age 58 at the same time John was finishing high school at age 21.  Mark termed this end of school time the “21 year old cliff.”  (We have a similar cliff here in British Columbia, but it is at age 19).

I wrote recently about my hatred of the notion of this cliff called transition in Everybody Grows Up.  While I’m committed to celebrating Aaron’s advancement towards adulthood, I’m also scared.  I have no crystal ball for his future, but looking at the ‘system’ alternatives, it seems like because he has Down syndrome, his path is narrow and pre-determined by agency day programs, job coaches and part-time minimum wage work.

I want him to be excited about his future, to have options and choice just as my other two children did at his age.  This only seems fair to me.  Why should Aaron be denied opportunity because of his extra chromosome? (She asks naively). Aaron is denied opportunity because he lives in an ableist world.

Do you know what Mark and John Cronin did in response to this reality?  They started their own damn company, which now employs 39 people and last year grossed $5.5 million in their second year of operation.  Mark and John went off script and created their own reality.  That’s what moved me deeply.  I realized that’s what we have to do, too – in partnership with our son.

“Ideas can come from anywhere,” Mark said.  “If there’s something you love, chances are there will be others who will like it too.”  John always had a slick fashion sense and liked wearing crazy socks:  hence John’s Crazy Socks company.

I was also struck by the company’s commitment to inclusive employment.  Twenty-three of their 39 employees have disabilities.  Mark emphasized their company is not a charity – their staff (called sock wranglers) have to earn their jobs.  He spoke proudly of the power of their workforce and shared principles that can apply to all organizations:  give people a mission they can believe in.  Put people in a position to succeed.  Make sure everybody knows what they do matters and how it feeds into the mission.  That’s profound employee engagement advice for any organization.

John’s Crazy Socks makes accommodations for their employees, but think about what Mark said, “There are accommodations because you make accommodations for any workers.”  Not just workers with disabilities.  This is so true.  We all need accommodations in one way or another to work.  This is just part of employing human beings.

Finally, the Cronins addressed the notion of paying their employees above minimum wage.  “We don’t expect minimum work, so why pay minimum wage?” asked Mark.  This way of thinking is so evolved beyond those awful news stories that I read about organizations ‘allowing’ people with disabilities to volunteer for them.  Not paying people for working because they have a disability makes my head explode.

“We pay people to establish the dignity of work,” Mark emphasized.  Amen to that.

John and Mark gave me much to think about.  There were a lot of take-aways for an one hour talk.  Afterwards, my son Aaron proudly posed for a picture with John.  The other folks with Down syndrome in the audience high-fived John and hugged him.  He was a celebrity in their midst.

“Follow your dreams,” John told them.  We need to support our adult children to follow their dreams, to not settle for some miserly government prescription of what a life should look like.

As John’s dad, Mark ended with this:  “I’ve spent my entire life preparing for this moment.” At this point I turned away from Aaron to hide my tears.  Aaron isn’t a charity case.  His life has meaning.  Stories of people with disabilities working aren’t just ‘cute’ stories.

Today was one of the first times that I felt a jolt of hope for my son’s future.  My epiphany is that we don’t have to do what the system tells us to do. Thank you John and Mark Cronin for that gift.  Now, everybody head over to https://johnscrazysocks.com/ and buy yourself some awesome socks.

 

 

 

 

leaning out

This essay was first published on January 19, 2017.  It is worth a repeat because Dr. Yona Lunsky recently asked me for a few words about having a kid with a disability for a talk she did this weekend for the Down Syndrome Research Foundation conference.  I scratched out a few thoughts for her and will follow up with another post, specifically about moms’ mental health.   But first, this… 

Leaning Out

…or the work-life balance and how I’m totally faking it all the time.

I’ve never struggled this much to prepare a presentation.  I was asked to speak to the Rare Disease Foundation‘s parent support group in Vancouver on the topic of work-life balance.  I pulled some quotes.  Wrote speaking notes.  Created some questions.  The presentation was last night and still I floundered.  I have no definitive solution to how to achieve work-life balance, especially if you have a kid with a disability, like I do.

How do you balance work and life?  I have no freakin’ idea.  I didn’t know how to do it when I had two typically-developing kids in the 1990’s, and I most certainly don’t know how to do it now, with my remaining complicated kid in my nest.

I called my talk Leaning Out to temper Facebook COO Sheryl Sandberg’s book, Leaning In.  Her book is described as ‘compelling women to reach their full potential at work.’ Well, in November, I had to resign from my job because I couldn’t figure out how to be available to my kid and to keep working in a staff position.  So I’ve leaned out.  Way out.

I used to believe that you can have it all, but not all at the same time.  My youngest son has taught me that having it all is overrated – what is this ‘all’ anyhow?  A big house, full-time job, annual tropical vacations?  I think we’ve been sold a big fat lie about what’s really important in life.

My talk was a jumble of what I’ve learned over the past 23 years of motherhood.  In the paid work world, I’ve worked full-time, part-time, on contract and as a freelancer.  Other times I’ve immersed myself in unpaid work.  Some days I fill with grocery shopping and sitting on a log, watching the dogs at Kitsilano dog beach.  In leaning out, I’ve been humbled about how much I don’t know.  It was so easy to adopt an identity when I had a job – it was handed to me in a position description. Now, I’m making it up as I go along.

Here is some inspiration that I lean on instead to find my way.  As Ian Brown says, having a kid with a disability means recalibrating all the time.   Most of this is not in your control. In redefining my own identity, these three philosophies help.

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1. Reject the Perfect
Brene Brown describes this best in her TEDTalk, The Power of Vulnerability. She says, “imperfections are not inadequacies; they are reminders that we’re all in this together.” We must stop pretending everything is okay all the time and allow ourselves to be vulnerable.  To do this, we have to find safe places to let our guards down to stop being ‘special needs mom’ cheerleaders – like with other moms over coffee or Facebook and in support groups like one I spoke to last night.  It is so important to find people who demonstrate that they’ve got your back, no matter what.  (That, and never clean your house before another mom comes over – this sets a really bad precedent).

 

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2.  Embrace the Slow 
Having a kid with a difference forces you to get off the ‘regular person’ treadmill of life.  Life is busy, yes, but in a different way.  You get transported to a different planet that you never bought a ticket to – one with great frustrations with hospitals, society, social services and education systems.  There are times of great slowness – while helping a child get dressed, or waiting for a whole sentence to come out, or summoning all your patience for a kid to finish their meal.  In these slow times, it is so important to embrace the small joy, as Lisa Bonchek Adams gently reminded us.

I’m also fond of this New York Times Essay by Tim Kreider called The Busy Trap.  In it, he says, “busyness serves as a kind of existential reassurance, a hedge against emptiness; obviously your life cannot possibly be silly or trivial or meaningless if you are so busy, completely booked, in demand every hour of the day”.  Carl Honore’s In Praise of Slow book and movement also offers similar sage guidance.

 

why
3.  Remember that unpaid work is work too.
Finally, I suggested banning the words ‘just a mom’ and ‘volunteering’ from your vocabulary.  Work is work is work.  We focus so much on what we do and how we do it, we forget about the why, as Simon Sinek reminds us.  Caring for another vulnerable human being is the most important work there is.  It is what makes our world go round. Our society doesn’t value unpaid work, but that doesn’t mean that we shouldn’t value work that doesn’t come with a paycheque.  Think about writing a Mom Resume that outlines all the skills you’ve acquired since your child was born.  Writing it down gives it power and makes it real.

But sadly for last night’s audience, I had no real wisdom, no solutions, no fixes, no way to achieve this elusive work-life balance. I mostly talked out of my butt, and used other people’s words as inspiration.  I was pleased to spark conversation, and it was heartening that others felt safe enough to open up about their own struggles.

Accept that recalibrating is okay and to be expected.  Talk about your imperfect life in safe spaces.  And value the work you do, even if others don’t.  As I seek acceptance of my current messy life so I can find peace in my heart, I hope you can too – in your own way and in your own time. xo.

How to make it ok (part 2 of 2)

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@yogimemes

A shorter, less profanity-laced version of this essay is up on Huffington Post.

My husband/editor read my previous post and asked in his typically pragmatic way:  so what are you going to do about it?  This is a fair question.  I presented the problem of mothers with kids with disabilities being forced out of the paid workforce. Now what is the solution?

Well, it turns out there are lots of answers to this question, because families of kids with disabilities are incredibly resourceful.  We make lemonade out of lemons every single day.  Sometimes we rant but then we dig deep, put on our big girl pants and get shit done.

So family-friendly employers are rare and our governments don’t care about us.  Here’s what we do instead:

Connect

Whether you call it your herd or your people, it is so important to reach out to find like-minded families.  Before I had Aaron, I called these wonderful women my mom friends – in the disability world, the term is medicalized and called peer support.  No matter – the result is the same.  This means having other women you can talk to who get it.  When my now-adult kids were young, I met my best mom friends at playgroups, La Leche meetings and in the school hallways.

With my third kid, I’ve had to expand my definition of  connecting. Connecting happens through Facebook, Twitter or email in 2016, and that’s ok.  The days of meeting around the kitchen table are rare. I have to be more creative in the ways I get together in this era of busyness.

The mom network of information sharing, particularly in the complex world of disability, is very powerful.  A few months ago, I was in a meeting with health professionals. One of them asked me:  what clinician has taught you the most about resources and services?  I actually laughed when I responded and said:  it wasn’t clinicians who taught me; it was other moms.  It is always other moms.  Recently, on Christmas Eve, a mom emailed me asking a question about renting a pediatric wheelchair.  I didn’t know the answer, so I emailed three other moms and one clinician.  Within 4 hours on Christmas Eve, I heard back from all three moms with detailed responses.  The calibre of the women in my universe continues to impress me.

Alas, adult relationships also take time. I’ve learned to be patient with this process, especially since moving to a new city two years ago. Sometimes I’m lonely. Success to me doesn’t mean having a dozen girlfriends I go to Mexico with every year (although I’d be open to that, ha).  It means having different women at different times to lean on, to ask questions, to bounce ideas off of and to vent with.  One mom and I have an amusing relationship sharing GIFs on Twitter.  Another mom has kindly included me in her group of moms who have a subscription to a local theatre company.  A mom I met at work invited me to her yoga class.  These pieces of friendships make me feel less alone and these women are my great source of support and love.

Organize

I can attest that the only way change has ever happened is when regular folks organize together.  Governments and systems never change on their own – never ever ever.  They only respond to pressure from outside groups to do the right thing.  So much has changed in the disability world over the past 50 years.  People with Down syndrome are no longer automatically institutionalized at birth. Now our kids are included, for the most part, in their community schools. It wasn’t until the 1980’s that heart defects in babies with Down syndrome were even surgically fixed – before that, babies were left to die because of ‘quality of life’ bullshit.   Do you think this positive change happened because of bureaucrats?  No way my friends.  These advancements happened because families stood up, organized and told their stories.  They insisted that the status quo wasn’t okay anymore.  Change came from the people, not from bureaucrats, who, save for rare champion, are only invested in keeping things the same.

Celebrate unpaid work

A long time ago, I belonged to a Ottawa based group called Feminist Mothers At Home.  This group of moms was lobbying the government for recognition of the value of all unpaid caregiving work – including caring for children, elderly parents, or loved ones who were sick or had disabilities.  My involvement with them taught me an early lesson: in society’s eyes, you do have to be counted to count.  Other wiser moms taught me that women are often silenced and the value of speaking our truths.

I’ve never used the terms ‘volunteering’ or ‘stay at home mom.’  I prefer to say unpaid work.  This work is important – uncounted, undervalued, unrecognized – but caring for others is the glue that holds our whole world together.   If I meet someone new, I ask – do you work outside the home or at home?  Because work is work is work – whether you get paid or not.

Recalibrate

When I heard Ian Brown speak in October, he said his son Walker has taught him to constantly recalibrate.  It is true that our kids show us what’s important in life, but I’ve been guilty of ignoring that, or fighting it if it isn’t in alignment with what I thought was true.  A big part of paid work is identity.  I’ve had to constantly adjust my identity over the years and this has been hard.  Give yourself time to grieve for the loss of the so-called perfect life, in order to accept the life you have.  This might mean mourning career plans or graduate degrees.

In some ways, it is easier to wake up, get dressed up, arrive at my office, go to meetings, feel important.  When I have a job, the ‘who’ part of who I am is pre-packaged and handed to me for 7.5 hours a day.  When I’m set adrift on my own, I have to make this up myself, every single day.  Recalibration is about constant change, but recalibration must be done to find peace in your heart.

Open your own damn business

Four years ago, I was a lonely freelancer, picking up writing gigs here and there and working from my desk at home in between school drop off and pick up time.  I never got invited to anybody’s work Christmas party.  I knew that I wasn’t the only independent feeling that way, so my husband and I started a company called Bird Communications.  It began as a community, with photographers, designers, writers, editors, researchers – who all, for their own reasons, didn’t want to work for the ‘man’ in a staff position.  We met once a month for Bird Gatherings at a local coffee shop.  We got to know and care for each other.  We hosted our own damn Christmas party at our house, which was packed with Birds and their young families, all pining for a different model of work.  Slowly we transformed from a social, networking and learning community to a true health communications company.  We began to win paid work projects.  We never promise full-time work, and we place people the best we can, so this model doesn’t work for everybody.  But we help our Birds find contract work and make sure they get paid – an important factor for freelancers.

The lesson here is if you build it, they will come.  The composition of our (now) 26 Birds is interesting – we have many mothers just off maternity leave, or whose kids just began school – and they didn’t want to go back to full-time cubicle-land work.  So they joined us instead.  Of late, we have a number of smart creative moms who are communications or health professionals AND who have kids with disabilities.  They are an untapped, ignored, and simply awesome workforce.  We feel fortunate to have them amongst our midst.

Paid work

I’ve learned some hard lessons from the paid work world.  If I do venture back into that arena, I’ll choose my employer more carefully.  At my interview, I’ll ask some hard questions, like:  what happens if my child is hospitalized and I have to take time off work? How flexible are your hours, really?  I’d ask around about the work culture to see if it is an employer more interested in delivery of work than the optics of me sitting at my desk every day.

I’d better inform myself about benefits and paid leaves.  When my son was in the hospital last year, I was told that there was no paid leave for me to take time off work because I was in an out-of-scope position.  At the time, I was so whacked out with stress that I didn’t question this – I merely dutifully took a week off without pay.  Later, I found out there was a provision for such an absence.  It was my own fault for not contacting human resources and knowing my rights.

Part of having children is redefining what success looks like.  This is different for every woman.  For me, this means more leaning out, more acknowledging that 18 months in a position isn’t a failure, recognizing that I need to be fluid with both my identity and how I define myself.  Sometimes work is sometimes paid and sometimes it is not.   This also means suspending judgment and supporting other women in their choices.  The mommy wars is so distracting from the real issues at hand – you never know what your decision would be unless you walk in someone else’s shoes.  We are all doing the best we can.

Finally, 2016, I’m exhausted from keeping the system’s secrets.  I’ll cycle back to the cheeky quote at the beginning of this long essay. My 2017 resolution is based on a rather irreverent book I picked up over the holidays:  The Life-Changing Magic of Not Giving a F**k by Sarah Knight.  Be irreverent about things that don’t matter so you have time to be reverent about stuff that does.

Stand up.  Band together.  Use your voice.  You are bad-ass.  You are a sorcerer of divine light.  Don’t ever allow anybody to take that away from you.

this is not OK, part 1

Edited to add on December 22:  I’m thrilled that Huffington Post picked up on this little essay.  Here it is, on their site (I edited it – it is cleaned up – and a slightly different version than this one).

My last day of my paid work position was on November 4.  I continue to struggle mightily with having to resign from my job, which I dearly loved.

The official word is that I resigned because of my son.  The unofficial – and true – reason is much more complicated than that.  I resigned because:

  • My son is 13 and too old for before and after school daycare.  He can’t be left home alone, never mind find his way back and forth to school on his own like most 13 year old kids.  
  • There are a few rare childcare spots for youth with disabilities, but since we don’t have a Ministry of Child + Family Development file open for him – he’s not ‘disabled enough’ and simply doesn’t have the right diagnosis for our government’s social services ministry, we can’t access those spots anyhow.
  • The school day this year in special education in high school is shortened – requiring a smaller window where I’d be available in between drop off and pick up time.
  • Either my husband or I need to be visible and available at his new school – to build relationships with teachers, to attend meetings, to respond to phone calls to pick him up early.  He also has medical appointments and (private) therapies that someone needs to take him to.
  • My husband makes more money than I do – deciding who was going to quit work was a simple math equation.

These are all system problems, not Aaron problems. There is a distinct lack of support from our government for parents of children with disabilities to contribute to the paid workforce.  I’ll pause here to acknowledge the even more alarming issue of system and societal barriers constructed to block people who have disabilities to hold meaningful employment.  Many ministries willingly contribute to the problem:  Education, Human Services and Health.

In my attempt to resolve this in my workplace, I asked for a more flexible work environment to be more available for my son.  I wrote a proposal asking to be converted to contract, where I’d be onsite for meetings, continue to do outreach with families, but work outside of the constraints of a 3 day a week work schedule.  I was told ‘no’ – Human Resources would not allow this arrangement. Irony alert: my employer was a children’s hospital within a health authority.   This was an ego-shattering conversation- accommodations would not be made for me.  I have my hat in hand.

Workplaces that are not family-friendly nor flexible are not Aaron’s fault either.  This is an issue that affects mostly women, who statistically make less money than their male partners (if they have one) and are the ones in a relationship who typically have to drop out of paid work.  This is a feminist issue. (Note:  there are also many wonderful male caregivers out there – I’m not intending to exclude them.  But I’m speaking to my own situation).

I’ve been oscillating these past two months between deep sadness and simmering rage about my paid work situation.  I’ve been asking around my community of moms who have children with disabilities what they do about paid work.  Many moms do work when their kids are young – this is when daycare spots for kids with disabilities are more plentiful.  Other moms have teenagers and have been forced to opt out of paid work, or have flexible employers – although these types of employers are sadly the exception.  Yet others piece together a freelancing life, picking up work here and there on a project or contract, like I do now.

Many families slowly inch their way towards poverty.  We bleed money every month – ironically when we need it even more for our youngest child than we did with any other of our kids – to pay for therapy (which is all privately paid in this province, and expensive) and to save for his future (with a provincial government with one of the poorest rates of adult disability assistance in Canada).

“I left my job I had for 20 years when my son started high school, too,” one mom told me last week over coffee.  When he was younger, they had cobbled together care with grandparents, but their son’s needs became more pronounced when he hit adolescence and the grandparents got inevitably older – which was not the best combination. So the mom had to resign.

Other moms have left established careers to become Educational Assistants in the school system – low-paying, but at least the work hours paralleled their children’s school hours.  Others joined non-profit family support or disability organizations – which are typically more understanding of family need, but who also don’t pay well.  I’ve been picking up freelance editing and writing work and continue my (very part-time) speaking career.  Other moms have to opt of the paid workforce entirely to concentrate on homeschooling, unpaid advocacy and/or caregiving work instead.

This might all sound fine and dandy.  We make work literally work, somehow.  While I was working, I didn’t think about the single moms or the families teetering on the brink of poverty because the system made it impossible for one parent to work.  But I’m thinking about it now, a lot, having been soundly humbled and sitting here in my (relative) place of privilege.

As with many of the issues in the disability world that are not ok, the lack of support to allow women who have children with disabilities to work is also not ok.  This is an equity issue. Women with typically-developing children have fought for many years to have choice as far as paid work – to choose to stay at home or to choose to work.  That choice is automatically taken away from women who have children with extra needs.

One of my connected mom friends kindly did a lit search for me and forwarded articles on this very topic.  Titles ranged from:  Mostly the mother: Concentration of adverse employment effects on mothers of children with autism; “I feel as if I’m the one who is disabled” – The Emotional Impact of Changed Employment Trajectories of Mothers Caring for Children with Disabilities; and The Economic Costs of Childhood Disability.

In the next few weeks I’ll be sifting through these articles and writing more on the topic of paid work in our world.  In the meantime, I’ll end with Ellen K. Scott’s quote from her excellent paper, I Feel as If I’m the One Who is Disabled, from Gender & Society, Vol. 24 No. 5, October 2010 672-696:

“Similar to the findings in other studies, mothers mourned an identity transformed and the loss of an essential part of themselves (Shearn and Todd 2000). They blamed the lack of alternative care, the inflexibility of the employers, and their child’s (or in some cases children’s) extraordinary needs, which required extensive direct and advocacy care (Litt 2004).”

Our kids’ needs are only one part of this formula.  The way our governments and our workplaces support – and do not support – those of us who care for vulnerable children is both an interesting and disturbing question.  It is a feminist question, an equity question and an economic question.  I remain committed to the notion that change will only happen if we shine light on our issues by sharing our stories.  The invisible stories of caregivers need to be told.

my why

Today I excitedly opened an email from a conference that I really really wanted to attend.  I had submitted an abstract called The Art of Storytelling:  how to craft stories to change the health care world.  I am pretty good at writing abstracts, had a solid creative presentation to pitch and have a decent acceptance rate for abstract submissions.  This was a conference I admired, in a city close to my eldest son, so I was crossing my fingers that I’d be accepted for a variety of reasons.  I clicked on the email in my inbox, holding my breath:

We regret to inform you that your submission was not chosen…

Well, damn.  I know Wayne Gretzky says, you miss 100% of the shots you don’t take. As a writer, I get rejected a lot (which tends to be radio silence in this digital age, not mailed rejection letters), but damn.  It always stings.

I’ve been floating around as of late.  I resigned from my paid staff position last month.  I’ve had two kids grow up. My youngest son hit puberty last year and is in a push for independence, which of course results in the slow rejection of the mother.  I miss hanging out with my daughter and doing girl things. I pine for my mom friends in Edmonton. Everybody here seems so busy – I’ve discovered that the laid-back west coast mentality is only an urban myth. I cannot even occupy myself with shopping for stuff and cleaning my big house – we’ve downsized by half and I have no more big house, no yard and no room (or desire) for more stuff.  This week we are in the midst of an odd blizzard and have been stranded up on our mountain.  I have time now to think, which is a terrifying concept in a world where we get caught up in the Busy Trap just so we don’t have a moment to ourselves.  The whole world is zooming around me so fast and here I am, just quietly sitting on a bench watching it go by.

Before I left my position, I had two wise colleagues separately recommend Simon Sinek’s TEDTalk to me.  It is called How Great Leaders Inspire Action, and while by title I’m no great leader, I do have a little sphere of influence, with my family, my company and myself.  I’d suggest it is worth 17 minutes and 57 seconds of your time.

If you don’t have the time to spare to watch it, consider this diagram:

why

(saved from:  varchannelmarketing.com)

If you are feeling a bit lost and lonely like me, or if you have the nagging feeling that what you do in life is not in alignment with your values, this approach can give you direction.  Sinek’s point (in business, and I’m extracting his message to apply to life) is that the why matters.  Why do you do what you do?  And that’s not what your position title is, or your quest to make money to buy more and more stuff – I challenge you to dig deeper than that.  Why are you on this Earth?  If we can all can answer our why, then the how and the what will soon become clear.

So I’ve had the time to think about this a lot (and won’t be wasting time preparing to present to that conference that rejected me, ha) and feel confident in stating:

“I share stories – and create opportunities for others to share their stories – to rekindle compassion in the world.”  That’s my why. All my meaningful work has been born from that why. Now I just have to trust that my why is the light I need to shine my own way.

the longest goodbye

screen-shot-2016-11-07-at-5-26-13-pm

Friday was my last day of work as Sunny Hill Children’s Health Centre’s Family Engagement Advisor.  I’ve been in the odd position of saying goodbye since the beginning of July when I first went on a leave of absence from my position.

I wouldn’t recommend giving four months’ notice for a job.  This has been like pulling a bandaid off veeeeerrrry slowly, as I didn’t want to leave.  I loved my job.  My quest for a flexible work environment has led me back to being home-based – within the confines of our condo, nobody cares what days of the week I work, just as long as I get the work done. So it is back to the freelancing life for me.

Resigning when you don’t want to is a weird thing.  I didn’t get fired nor did I resign because I was unhappy with my job and heading to another position.  Instead I left based on a tale of woe  – the end result was a sad Sue.

I hope I left well, as the leaving really is the hardest part.  All last week there were celebrations:  a managers’ breakfast, a roundtable where folks shared what they had learned working with me – interesting, a common theme was how the managers now approach family ‘complaints’ – reframing complaints as constructive feedback to improve the quality of care and service – that pleased me.

Later in the week, I was treated to lunch at my favourite restaurant and on my last day, I hosted cake and coffee in my office, was gifted a huge bouquet of autumn flowers, and very specially – received a beautiful painting from the nursing unit of children’s hands done by the young patients there.  I felt very loved.

A very diverse group of folks popped in and out of my office on Friday for a hug and piece of cake:  administrative support staff, booking clerks, therapists, managers and physicians.  My best hug was in the hall from one of the kindest, wittiest person I know – David, the gentleman who is the maintenance man at the hospital.  This variety of staff validated my approach at work, and in life.  Everybody matters.  Everybody influences the patient and family experience in a hospital.  Every single person working in a health setting should be considered a health professional – not just the clinicians – and deserves to be treated with the same respect and dignity that we ask for as patients and families.  That love needs to be spread everywhere, all the time, to change the culture in a hospital.

Thank you to my Sunny Hill friends for the beautiful send off.  Thank you to those in my online community who have expressed care and concern for me and our son over the past four months.  We will be fine.  Having me be home-based and more available for him has helped so far.  I’m resourceful – picking up writing, consulting and speaking gigs as I go along.  I’ll miss belonging to an organization, a steady paycheque (!) and the built in social connections that go along with that.  Being a freelancer offers lots of freedom, but it can offer up loneliness, too.  I learned so much about staff engagement at Sunny Hill, lessons that I will keep close to my heart as I move on.  As I like to say, patient and family engagement and storytelling is my life’s work, whether I do it inside a hospital or not.  I am proud of the family engagement work that’s been done at Sunny Hill over the last year and a half, and I know that the new Advisor will be in good hands.

Most importantly, it was an honour to have been invited to catch a glimpse into the complicated, beautiful lives of families who have children who are served by this pediatric rehab centre. May they continue to find the strength to use their voices and to share their stories to make the world of health care a better place, and may all the health professionals at Sunny Hill continue to create opportunities for the listening.