health squawk

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Rabble-rousing by truth-telling

Health Squawk is my new Instagram account where I share anecdotes about my travels in the health care system.  This is about unveiling the secrets of health care, which includes both the inspirational and the profane.

I believe in using our voices to change the world. The way patients and caregivers do this is by sharing our stories and insights. I dabble in topics that include having breast cancer and being the mom of a kid with a disability.

Do you have a Health Squawk to share?  A short quote illustrating something ridiculous or humorous in health care?  Email me at:

ps:  You are most welcome to share my images, but please do so with credit and a link back to this blog.

moms gotta chillax

Last night, I watched the first episode of Speechless.  I chuckled uncomfortably at the Minnie Driver character, Mama Bear of a kid with CP.  My husband laughed considerably louder than I did.  I looked around nervously to see if there was a hidden camera in our apartment.

Some highlights from the ‘mom’ character:

She’s intense and a bit wacky
She lectures people on the correct language of disability, disabled parking spots and appropriate accessible accomodations
She’s burned through many schools and moved houses trying finding a good fit for her son
The teachers have a meeting about her before she shows up to the school, to figure out how to ‘handle’ her
Her husband is long-suffering
Her other kids are long-suffering too

This all felt eerily familiar.

I turned to Mike afterwards and asked:  what did you think?  He replied:  I think she even has the same hair as you.  Oh.  Got it.   I thought to myself:  I gotta learn to relax.  

This morning I was sitting on the couch, drinking my coffee.  Teenage Aaron stumbled out of his room and stood in front of the fridge in his underwear.

Moms gotta chillax, he said, talking into the fridge.
What did you say? I said, unable to understand his mumbling at the best of times.
He turned to me and said clearly and definitively:  Moms gotta chillax.  Massage, day spa, books, sushi, baths, he added, counting things moms can do to chillax on his fingers.

Got it dude.  Mama Bears, promise me this weekend you will pick one thing to do to chillax.  Personally, I’m going for a pedicure at the day spa.  My Yoda has spoken.

the perks of being aaron

Lest I give the impression that it is all doom and gloom having a kid with a disability – here is our reality to provide some needed balance.  YES systems are BAD.  YES some people who say they will help you DO NOT HELP YOU and this is especially BAD.

But also YES some systems are good, like most things to do with recreation, which are easy to access, and FUN.  Aaron plays Challenger Baseball, which is the most awesomely organized recreation activity for kids with disabilities EVER. You show up with your kid, whatever age, whatever difference they have, and they get assigned a peer buddy to hang out with and they have FUN.  I do not have to get my pediatrician to fill out a form proving Aaron has Down syndrome or have a psychologist administer an IQ test for Aaron to play baseball.  (Sarcasm intended).

(Special Olympics is pretty good, although they demand a cervical spine x-ray for kids with Ds – an x-ray that isn’t even relevant anymore).  

I don’t see Challenger Baseball or Special Olympics as anything ‘special’ – I firmly believe that my kid should play sports as easily as any typically-developing kid can.  Challenger, in particular, makes it easy for this to happen – for my kid to be active, be part of a team, learn some skills and have fun.  There is another group in Vancouver called Soccer Dogs that has a similar philosophy.

This past month has been crammed with some extraordinary activities for Aaron because he has a disability.  I’m totally ok with that, considering all the cursing and struggle he has in the health and school systems – any perks?  Bring ’em on.

The school arranged a day at the Playland at the PNE, which was sponsored by the CKNW Children’s Orphans’ Fund. That was super because it was adapted – shorter line-ups, lots of volunteers to go rides with kids.  In Edmonton, Northlands has a similar event in July called Magic Monday.

There was some pizza and bowling action for the kids with special needs at school on Friday…and a Challenger Jamboree (more pizza) and we attended the Lower Mainland Down Syndrome Society picnic at beautiful Belcarra – there was a nature interpreter who took us families on a tour of the sea life, which was very informative for us prairie folks.

IMG_7225This is a photo of a super activity from Vancouver Fire and Rescue Services.  Aaron and I received an invite from a lovely recreation therapist that I work with at Sunny Hill Health Centre for Children.

We felt very fortunate to be included in this fabulous event – which included even more pizza, real rides in real fire trucks round and round the block with the sirens wailing, and holding the fire hose and aiming at pylons, a building and (most fun) one of the Fire Academy students.  My absolute favourite part of the night was seeing the fire fighters lifting kids up from their wheelchairs into the fire trucks for a ride.  Now that was pretty special. I even got to go for a ride in the fire truck and I COULD NOT STOP SMILING.

I’m not even counting all the kindnesses, lollipops, cookies and extra stuff that I know this kid gets because he’s Aaron.  It is very important for me to pause and be thankful for the people who go the extra mile for our kids.   Lucky?  Yes.  Fortunate?  Yes.  Blessed?  Yes, that too.

The fact is that Aaron has a very good life – he is beloved and he is loved.  And isn’t that what we all want from this earth?

shake it off, shake it off

As a 46 year old mother of three, I’m hardly in Taylor Swift’s demographic.

However, as a sensitive fragile flower, an introvert, and a mom and advocate who often is really mad at the world, it feels like her Shake It Off song speaks directly to me.  I will confess to purchasing her new album 1989 (hey, that’s the year I got married to my first husband!) at Starbucks today.

If the haters gonna hate, hate, hate, (no matter what I do), then resiliency means shaking it off, shake it off.  I need that song in my head sayin’ it’s gonna be alright.

(Taylor Swift, your video with the shaking tutus is pretty funny too.  Thanks, from a tired old mom who looks for inspiration everywhere).


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.

the summer list

IMG_5079Since I own my own company, I can take time off whenever I want.  I love this autonomy, although I do not get paid for vacation, which hurts the next month when my paltry invoice payments come in.  I’m not complaining.  For our family’s life, this flexibility is worth it.

Every spring, I start vibrating about arranging summer childcare for Aaron.  For my clients do not halt work over July and August, and I need to be available to them.  Each April, I lie awake at night, contemplating our options:  regular babysitter, day camp (segregated where I don’t need to hire an aide, or inclusive where I do), lean on older siblings, take conference calls in the bathroom on mute with kids screaming in the background.  None of these options are appealing for the entire eight weeks that is summer vacation.

Two years ago, Aaron had a really challenging year in Grade 3.  So much so that we sold our house and moved in order to get him into a more welcoming school setting.  I will admit to running away that year on the school break.  We packed up our vehicle, and took off for a month long road trip to Idaho, Washington State and British Columbia.  We stayed at a lake cottage, a winery, a yurt and a water buffalo farm.  It was really awesome to have no schedule and all that time together as a little family.  We took Aaron’s lead on activities, and splashed around at beaches and in pools, went to drive-in movies, and ate a lot of burritos.

When we returned, with the month remaining, we started a Summer List.  This helped me feel like we had a sense of purpose to the long summer days at home.  Aaron would help create the list, and each day we would pick one thing a day that we wanted to do.  

Over the past two summers, we’ve tinkered with the Summer List.  This year, Aaron is 11.  He is now very specific about what he wants to do.  Fort Edmonton?  NO.  Corn Maze?  NO.  Instead he replaces these with an infinite number of movies, mini-golfing, go-karting, meeting Dad downtown for a hot dog lunch, KFC picnic in the park, LRT train ride and Telus World of Science. Fair enough.  It is his Summer List, not mine.  (Mine would look something like:  Walk.  Bookstore.  Movies.  Pedicure.  Drink wine with friends. Date with husband. Repeat).  This is important:  we only pick one thing off the Summer List a day.  Sometimes we do nothing at all.  We have opted out of doing the busy thing.

We supplemented that with a week at a truly inclusive summer camp (thank you, University of Alberta), where the staff was trained to work with all types of kids.  His eldest sister hung out with him while I attended the occasional work meeting.  This, coupled with a month in British Columbia lying on a floatie on a lake, has filled up the Summer of 2014.

There are ten days left in summer.  Aaron is downstairs, slowly eating his Cheerios and nectarines and watching Spiderman on his iPad.  We are not missing the morning school rush, which is a complex process that includes pulling him out of bed in the morning, setting the timer, having a contest to see who gets dressed first, combined with bribes, threats and pleading to get him out the door in time.

I’ll have lots of time over our cold harsh winter to catch up on work while Aaron is at school.  Having two adult children reminds me that this time with Aaron is not forever.  One day, he, too will move out and leave our nest.   As the great George Harrison once said:  All there is ever, is the now. Each day is a precious gift.  Let’s govern ourselves accordingly.

lessons from gay pride

Andrew Ference with my friend & colleague Marni Panas.

Andrew Ference with my friend & colleague Marni Panas.

The Gay Pride Parade is the best parade:  with great music, dancing, sparkly costumes and general revelry.  The fun is guaranteed.

Over the past ten years, I’ve watched the number of people who attend the Gay Pride Parade go up and up.   A decade ago, only a pocket of friends and families would show up to demonstrate support for their loved ones.  This year, there were thousands of people at the parade.  The sidewalks were packed, and our city’s main square was bursting with party-goers.

Even our conservative politicians were represented, which would have been unheard in the past.  The captain of our NHL team was there, another first.

This was the place to be yesterday.  Gay Pride has blossomed from the fringes into the mainstream.  (There’s still a long way to go to secure equity and erase discrimination for the community, especially for people who are transgender).

I’ve thought to myself after going to the parade:  gosh, the disability community really needs something like this.  The Gay Pride Parade is a celebration of being gay, and an embracing of the gay, lesbian, transgender, queer and bi-sexual identity.  It is fun, unabashed and unapologetic.

Those of us who love someone with a disability could learn from this.  Andrew Solomon draws the parallels between the gay and disability communities.  Here’s what he says the gay community did, as translated to the disability community:

1.  Forge meaning in disability
2.  Build identity in your disability.
3.  Invite the world to share your joy.

There is great power in this philosophy.  Yesterday’s Gay Pride parade was about the people who are LGBT embracing their identity and inviting everybody to share their joy.

How often do people with disabilities do this?  I think back to the last time few times I saw a group of people with disabilities and their loved ones gathered together.  One was (sadly) at our Legislature, at a rally protesting cuts to disability services.  And the another time was just on Friday night, where kids who accessed the Stollery Children’s Hospital attended Dreamnight at the Zoo.  It was a relaxed, fun night, and Aaron ran into many of his friends from the Stollery and Down syndrome world.  It was like a great family reunion for him, and he hugged and high-fived his friends, and they ran off, unencumbered, exploring the zoo.

Events like Dreamnight at the Zoo serve to celebrate our kids with disabilities in a safe (and, yes, segregated) environment.   There’s a need for that, and I want to do more of that internal celebrating and not take it away.  One of the dads said to me:  “I’ve never felt so relaxed at the zoo. I don’t have to worry about people staring at us, or judging my son’s behaviour.”  I felt that way too.


Aaron on Friday night with his friends.

Let’s keep bringing our families together to celebrate our kids – that’s a part of helping them embrace their disabilities and form their own identities.  I think the next step is to take the joy they have and share that with the world – unabashedly and unapologetically.  This isn’t black and white.  There is a place for families with children with disabilities to get together on their own.

But it also means taking the celebration of our children and our lives out of the closet.  We can do this by:  telling our stories in mainstream media, as Hamilton Cain did in Oprah Magazine;  sharing disability research with the world, like Liz Lewis does; and moving out of church basements and into our community recreation centres.

These are examples of taking the celebration of our loved ones onto the streets – figuratively now – but maybe one day we will host a big sparkly fun parade too.   Thank you to my friends in the gay world for showing us the way.