mothers who are tired

Screen Shot 2016-07-07 at 10.08.38 PM

Recently, I gobbled up a long form essay in Vela by Rufi Thorpe called Mother, Writer, Monster, Maid.  In it, there were shades of Elisa Albert’s After Birth, which to me, was the first honest published writing about motherhood since Salon’s now-defunct Mothers Who Think.

I have no commentary as of late; I’m just tired.  I’ve retreated into reading, listening to Sinatra, baking chocolate chip cookies, playing endless games of Trouble and picking up my husband’s errant socks.  Take the time to consume Thorpe’s piece and you will see that’s ok.  Motherhood is stuffed full of so many dichotomies:  the love/the hate, the heartbroken/the joy, the bored/the interesting.  I’ve never figured it out; it is just a messy stew of boomeranged emotions.

As I embark on my 24th year of mothering, there’s no pause in sight – my youngest son, a teenager but not, needs me more, not less.  His disability adds a fine net of complexity over everything, like a soft mist setting on a shiny day.  I achingly miss my older two children, but they are not here.  Most worrisome is my eldest son, who lives in America, a country imploding into a boiling rage.

So much is out of my serenity prayer – what I can control and what I cannot – that I hunker down to search for peace in my heart.  That, and methodically climbing through green prickly forests in open-toed sandals searching for good sticks and logs that look like alligators is all that I can possibly do.

Genetic Discrimination is a Real Thing

I have taken a few days to reflect on this column that was published in the Globe and Mail on Tuesday, called Genetic Testing Bill Perpetuates Myths and Fears.

I’m still scratching my head over this piece’s single-minded approach. There’s no perspective offered from the community that is affected by genetic testing, only this sarcastic comment:

As Timothy Caulfield, the research director at the Health Law Institute at the University of Alberta, notes, there have been a lot of apocalyptic predictions about the evils of genetics: The decoding of the human genome (in 2003) has led to fears about designer babies, armies of clones and pervasive discrimination that creates a genetic underclass.

It is here that I must loudly protest.  My son has a genetic syndrome.  He and others in his community have experienced discrimination their entire lives, beginning with the health system where some physicians butcher the disclosure of a prenatal diagnosis to women, moving to societal discrimination directed towards my child with a genetic difference, manifested in the simple drying up of birthday party invitations and the more serious bullying in school settings.

I realize this column is about employers and insurers utilizing genetic information for discrimination.  So let’s move away from the real life examples of discrimination into the policy realm, shall we?  In our lived experience, here is where the discrimination resides:

Health care policy
Health services administered by our publicly funded health system vary wildly province to province depending on your genetic diagnosis. In my son’s case, he’s not ‘disabled enough’ to access publicly funded respite, home care programs, speech, physical therapy or occupational therapy services.  If you are fortunate enough to have money, you can only access these health services through the private system by paying out of pocket for services for your child.  It is here that the policy interpretation of the Canada Health Act fails our children.  Plus, we have stupid policies about IQ testing used to prove health care need.  That’s not discriminatory, is it?  Or is it?

Education
Well, if you want your kid with a genetic difference to learn, you’d better be willing and able to cough up the funds for private classes (or private school) because while the inclusive policies in our public education system are written to sound fantastic, there seems to be no measurement informing us how those policies are executed in the classrooms.   Again, here is an example of inconsistent application of policy in real life.  The school can’t teach our son to read, so the last batch of private programs cost us $960 for 12 sessions.  But that’s ok, right?

Social Services
Are you a parent of a child with a genetic difference and needs to or wants to work?  In British Columbia, that’s too bad!  Policy for supported childcare spots dictates that you require extra funding for your child to access childcare, and that funding is limited and also entails a waiting list that is years long!  After age 13, there is no childcare at all because everybody knows that a kid who is 13 can stay home by themselves, right?  Oh wait, maybe that’s not true if you have a kid with a genetic difference.  Oh well, too bad for you.

Families get pushed deeper and deeper into poverty because our childcare policies are not inclusive of those kids who need extra support.  Plus, adults with genetic differences are denied a livable income by our governments and my own provincial government is even so petty to take away people’s funding for bus passes.  But surely this isn’t ‘pervasive discrimination’ is it?

But Professor Caulfield tells us otherwise:

“There is little evidence to support the idea that genetic discrimination is a big problem. If it does happen, it certainly doesn’t happen on a scale that would classify it as a pressing policy dilemma,” (says) Prof. Caulfield. 

Maybe it isn’t a ‘big problem’ or a ‘pressing policy dilemma’ because people experiencing genetic discrimination are too preoccupied to speak up because they are trying to survive in the harsh landscape left in the aftermath of Canadian health care, education and social services policies. Maybe the voices of people who have genetic differences are lost in the sea of experts, who can grab a microphone more readily than someone with an intellectual disability or a speech impairment.

I’m just a mom with a BA in English, so let’s conclude with the words of Atul Gawande, who is a Rhodes Scholar and has his M.D. from Harvard Medical School:

The mistake, then, is to believe that the educational credentials you get today give you any special authority on truth.

Is there such thing as genetic discrimination?  May I respectfully suggest that instead of making broad-sweeping statements that genetic discrimination is not a big problem, you go to the source of truth:  the people themselves.   Because policy analysis is meaningless without combining it with the lived experience of real people.

inclusion or connectedness

IMG_0175
a typical photo of my not-so-typical teenager

Aaron is heading to high school in September.  This transition has caused me a great amount of personal grief – some of which is because of my anxiety around the switch of schools, but mostly because he is moving from a model of inclusion to a model of special ed classes.  We have fought hard to have him included in his community school setting for the past 11 years.   This has been exhausting work, but don’t think I haven’t noticed the erosion of inclusion over the years, starting in grade 3, when he spent most of his time in the principal’s office (this was an exceptionally bad year which culminated in a change of schools), to more and more time spent in resource rooms, with other kids with ‘funding,’ with Educational Assistants, and gravitating to hanging out with considerably younger kids at recess time. His peers pretty much left him behind in the dust, and while I can (and have) railed about this in the past, this is his – and my – reality.  Despite my constant pleas to provide adapted curriculum, delivered in the regular classroom, teachers struggled with figuring out ways to include Aaron as he got older and his gap with the grade’s curriculum widened.

How I wish that all teachers were educated to be special ed teachers so they had the toolkit to teach all kinds of kids – disability or not.  How I wish their classroom sizes were smaller and they had more prep time to adapt lesson plans for kids needing extra support.  This is not the case in British Columbia (nor Alberta, in my experience).  It is what it is.

Today I visited the special ed program in his new high school.  I arrived right after lunch, and it happened to be the students’ mindfulness time, called MindUP.  This involved a few minutes of listening to some beautiful classical music, followed by a guided meditation led by one of the Educational Assistants.  I stood with my eyes closed at the back of the class, basking in the peace.  A small epiphany floated by in my clear head.

What if my past discomfort with having Aaron in a special education class was due to my own discomfort with kids of differing abilities?   What if I had been dismissive of other kids with disabilities, as so many other parents of typically-developing kids are of Aaron himself?  What if I thought he should be in a ‘regular’ classroom to force him to act as ‘non-disabled’ as possible?  This awareness hit me like a sack of bricks, my eyes stung with tears and I hung my head in shame.

My past year working at a children’s hospital that cares for and serves children with disabilities has been a gift to me.  There, I have met many awesome families who have super children with different kinds of disabilities.  It has been an honour to be welcomed into their lives.  In getting to know kids who have CP, Autism, rare syndromes, and brain injuries, I have confronted my own values and feelings about kids with things going on other than Down syndrome.  This has been both humbling and hard.

I’ve realized that one of my trepidations about having Aaron in a special education class has been related to my own fear of the other children.  This ignorance comes from exactly the same place as so many families in Aaron’s schools over the years who have shunned him and our family.  (In our experience, the more educated and socio-economically well off the family, the deeper the shunning has been).  But I, too, have fell into this trap of stereotypical thinking.  Shame on me.

Today, after the meditation in the class, I opened my eyes and saw a group of diverse young people, all making their way in the world.  Some communicated with methods other than speaking, others used mobility devices to help them get around, and other kids had figured out ways to deal with our overstimulated sensory world through rocking or talking to themselves.  But of course they are all kids too, just like Aaron (who can be challenging to understand and who likes to hum and talk to himself in third person).

I am thankful for my workplace that has blessed me with the ability to reflect on my own values.  Last week, I met with a very wise mom, who shared with me – what if high school is really not about curriculum, but it is about Aaron feeling confident?  What if it isn’t a matter inclusion or segregation; it is a matter of connectedness?

The older I get, the more I realize I don’t know.  Bring on high school, in whatever form it is offered.  It has taken me a long time, but I am ready to put my own blustering ego aside to support my boy to finally find somewhere he truly belongs.

gimme shelter

hutWhen I lived both in Edmonton and Winnipeg, a surefire conversation starter in the elevator was the weather. Moving west, want to chat with anybody from the Lower Mainland?  Talk about the housing market.

We moved here just over a year ago and ended up renting a single detached house in the neighbourhood of one of the schools we had carefully chosen for Aaron.  This sounds simple, but finding a neighbourhood and then a house was fraught with great drama.  We flew out one day in February, me shaking with anxiety about the prospect of not having anywhere to live.

Yes, boo hoo, thanks to everybody who reminded us that we brought this on ourselves by selling our house in Edmonton and choosing to move to Vancouver (well, Burnaby).  But life is for living folks – a rare work opportunity arose here for me – as I’ve taught my children – it is your responsibility to not turn opportunity away.

We found this modest home in the first suburb of Vancouver through the persistence of a realtor recommended by my sister-in-law.  This was the best $300 we ever spent.  The rental market here is tight (and whacky), and there were slim pickins to be had, especially for people with cats.  We showed up with cash to this house and secured it on the spot.  The housing rental gods were shining down on us that day.

We’ve happily lived here for the past 15 months while we settled into our new lives. Renting wasn’t as horrible as I thought.  Our landlord is a decent guy who kindly leaves us Starbucks gift cards every time he has to inconvenience us in any way.

But nice landlords aside, the downfall of renting is a lack of housing security.  The chill of anxiety returned earlier this year when there were rumblings from our landlord about putting the house on the market.  Then a cryptic text last month confirmed it and we were faced with the prospect of finding somewhere to live once again.

Lest you think this is a silly first world problem (and it is, of sorts), let me remind you of Maslow’s Hierarchy.  Some say shelter is the most basic of needs; this version says it comes #2, classified as safety (and after excretion).

Maslow's_hierarchy_of_needs

I’d say my anxiety is just plain ole fear about having nowhere to live.  It feels like looking down a barrel of a gun.

So the great Vancouver question is:  rent or own?  (Unless you are eligible for a housing co-op, which we are not). The natural answer is to just buy the house we are renting, but (wait for it………), this house is only ONE MILLION DOLLARS over what we can afford.  Recall, my position is at a children’s hospital, which isn’t the best ‘get rich quick’ place to work.

And though I’d dearly love to move into the Main Street-Little Mountain area of Vancouver, a single family home there is about TWO MILLION DOLLARS over what we can afford.  So let’s just scratch the whole single-family dwelling in a neighbourhood of your choosing thing off our list.

Now, here I could get into a long monologue about housing prices.  I’ve dove into these conversations with others, which of course brings in the foreign ownership question, which teeters on a racial theme, where people often say:  it is the the wealthy Chinese, to which I respond:  well, remember 2008 when the housing market in the US collapsed, and wealthy Canadians giddily bought up cheap houses in places like Phoenix?  And how many people do we know who have vacation homes in Mexico?  It is the same thing.  This is unfettered capitalism at its best – if our government doesn’t regulate buyers, this is exactly what is going to happen in our global economy.  It isn’t the wealthy Chinese; it is our government’s own doing.

Rant aside, here we are, in need of shelter on September 1, 2016.  This has been a rather long, agonizing process of grief, scratching ‘must haves’ off our lists.

Must haves:
House
Townhouse
->I’ll take anything.

And then:
Three bedrooms
At least 1200 sq feet

Separate entrance
Two floors
->I’ll take anything.

We narrowed down the neighbourhood – so my husband can ride his beloved mountain bike to work, only five minutes is added to my reasonable commute & Aaron can go to his neighbourhood high school.

After dragging our boy to numerous open houses, we walked into a beautifully appointed condo with a view in a high rise.  (I know my Edmonton friends, who live in the land of never-ending land, are not going to believe we were considering apartments).

On our realtor’s urging, I wrote a letter to the buyers explaining why we wanted their home:  we loved their design choices, as prairie folk, we would especially appreciate that stunning view, and why we wanted to live in this small neighbourhood – a location purposely chosen with an eye to nurture Aaron’s independence.  In a community of 3,000 there was a chance he’d be recognized and known, and one day he’d be able to walk alone to the grocery store.  (A huge goal for us).

So once you find what you want, you just show up with your money and bid on a place, right?  In the Lower Mainland, this is a naive assumption.  The asking price isn’t the asking price at all, it is just the starting price.  So don’t even bother offering the asking price.  The realtors have caused such an artificial frenzy in the market they are all saying:  Bid over!  Bid over!  So everybody does and zoooom – the prices go up and up to infinity  and beyond.We overbid, but not enough.  

But our little letter pushed us over the edge and we were welcome to resubmit our bid, slightly higher, to match the highest bid.  After much sweating on our part, we were accepted.  The influence of my letter is my little glimmer of hope that the real estate market isn’t just about the money – there is a touch of humanity in there too.

A nightmare of breath-holding, banks who don’t understand small businesses, banks & mortgage brokers who err on the side of thinking you are trying to cheat them,  a gutting of savings, etc. followed these past ten days.

Yesterday, the deal finally closed.  Our financing was approved.  In 4.5 weeks, we will be downsizing by half and moving into our deluxe apartment in the sky.  (Anybody want any of our excess furniture?  Camping stuff?  Tools?  Free to a good home!).

Can we handle apartment living?  We shall see.  We have secured housing (and hopefully an eventual asset) for our boy, which is a huge relief.  The Rolling Stones sum up this whole post:  first with Gimme Shelter and then:

You can’t always get what you want…but if you try sometimes, you just might find, you’ll get what you need.

ps:  this is also known as:  when entitled Albertans eat humble pie + learn to adapt to the Vancouver way.

my secret weapon

It was Aaron’s last IEP meeting for elementary school yesterday.  These are meetings held at the school twice a year for kids with ‘designations’ like mine.  I am famous for being whacked out with stress and crying at these meetings.  This year I did not cry at all.

This is perhaps significant only to me, but after 23 years of being a mother, I think I’ve finally matured.  I don’t walk into these meetings with all guns blazing. I have decided to give everybody who shows up to Aaron’s meeting the benefit of the doubt:  they are not all my enemies. The very fact they sitting around the table means they are interested in my son’s learning.  I walked out realizing that they are all doing their best with what they’ve got.  Did so many people show up at that meeting (including the principal of his new high school) because we’ve been labelled as pain in the butt parents?  Why yes they did!  (I choose to wear this as a badge of honour instead of shame).  Do we have to supplement our son’s learning with privately paid programs to help advance his reading?  Why yes we do! Welcome to BC.  It is what it is.

Here’s another thing that helped.  My kind colleague Isabel Jordan shared this video from Shane Koyczan‘s spoken word masterpiece ‘This is my Voice.’  Now there was something about knowing that I had a voice that mattered – even if I didn’t have to use it strongly yesterday – that gave me great comfort.  I felt equal at that meeting table, with my voice tucked into my back pocket just in case I needed it.  My voice is my secret weapon.

The next time you have a challenging phone call, or appointment or meeting, listen to Shane.  He will reassure you that you’ve got everything inside of you to do what you need to do.

smile because it happened

Last Friday, my husband and I tacked on two extra hours to our babysitter request to sneak out for after work drinks.  The week had been oddly brutal for random reasons:  Wednesday seemed to be proclaimed be hostile to Sue day, Thursday was littered with unpleasant emails and Friday zoomed in at the tail of never ending to do lists.

I was sitting across from my husband at Portland Craft, pretending I live on Main Street and happily sipping an amaretto sour.  An hour in, Mike started to become  jittery, disappearing to the washroom and ‘checking the score on the hockey game’ on his phone at the table. I was blathering on about something when I saw his gaze shift slightly and his face brighten up.

My daughter Ella suddenly materialized beside me, fresh off a plane from Edmonton.  I had been totally punked, never suspecting my man and girl had been scheming a trip to Vancouver for Mother’s Day weekend for many weeks.   My hands flew to my mouth in shock and I grabbed her, hugged her, and burst into grateful tears.  I last saw her over two months ago, and my heart ached heavy for her.  She is a beautiful young woman, inside and out, a light of my life.

Mike and Ella had a good giggle about my shocked reaction.  I had suspected nothing, and I think this is the first time I had ever been truly surprised.  It is difficult to surprise someone who keeps a tight reign on the family schedule.  I like to know every little thing that’s going on so I can dutifully record all activities in my date book.

I had told Mike that all I wanted for Mother’s Day was to see my far-flung kids, knowing full well my eldest was in the US and not travelling and wistfully hoping for some miracle that Ella (busy, in between semesters of nursing school and working) would visit.

The emptying nest has been a sad phenomenon for me as a mother.  I put my deep longing to see my older children in a little box in my heart that I take out only on occasion:  when I’m driving and a Mumford & Sons song comes on; when I set the table for three instead of five; when I’m trying to fall asleep at night.   These are rather pathetic occurrences and my only solace is that my kids are independent, strong of character and living the lives they want.  And, they generally respond to my texts on a timely basis.  What more can a mother ask for?  My loose parenting philosophy is this:  make sure they are securely attached in their younger years and then let them go.  This is hard heart-breaking work.

Ah, but the reward of seeing them, even rarely, is very rich.  We do not take each other for granted.  All weekend, I delighted in Ella’s presence.  We roamed up and down the streets of Vancouver, eating sushi & burritos & doughnuts (not all at the same time) and shopping for shoes.  We went for pedicures.  Ella played soccer with Aaron’s soccer team.  Both kids made me a lovely breakfast in bed on Mother’s Day – eggs benedict on a sesame bagel with avocado and sausage.  They concocted artful handmade Mother’s Day cards – Aaron under the guidance of his sister, carefully crafting the letters M in Mom like hearts.  We sprawled on the couch together and watched Amazing Race.  We basked in the sunset on Spanish Banks.

Soon it was Sunday night and time to take Ella to the airport.  This was the over part and yes, I cried at the departure drop off area.  Ella said, ‘don’t cry or I’ll cry’ so I stopped and held my sobs until I hit Marine Drive back home.

But then I remembered this good Dr. Seuss quote.  Am I blessed?  Yes.  Have I done my job as a mom?  Yes.  I saw Ella for a sweet 48 hours and enjoyed every single second of it.  Happy Mother’s Day to me and to you too.  I hope that you felt loved and expressed love this weekend, because in the end, that’s all that really matters.

seuss
quotesgram.com

 

trolls can suck it

trolls
suck it trolls

Last week, I had an essay published in the Globe & Mail’s Facts and Arguments about my time spent in Norway with my two young children.  I was so excited Wednesday morning when it was posted online that I forgot to heed my own advice about never reading the comments.  I read the first few comments.  This was a grave mistake and demolished any sort of initial joy I might have felt being about published in a major national newspaper.

Silly me.  Now, I’m not going to feed these trolls by talking about them or responding to them, except to say that it is rather amusing to see trolls crawling out from under rocks about an essay about Norway.  They can suck it.  What I do want to say to writers who are contemplating sharing their work for publication is this…

Do not be daunted by the trolls.  There will always be someone who feels that he/she must comment something contrary about whatever you write – even if it is the most positive, feel good piece you could ever image.  Ignore them, and don’t give them the satisfaction of the attention by responding to them.  In fact, don’t bother reading the comments at all.  The days of civilized conversation on the Internet are long gone.  (But if I think of it, I can remember being on a listserv about attachment parenting with a group of moms 20 years ago, and unsubscribing after being engulfed in what we termed back then as a ‘flame war’ – badly behaved people have always existed on the Internet.  And in real life too).

Ignore all that crap.  Keep writing.  Persist in telling your stories.  This makes you vulnerable, yes, but it also opens you up to some beautiful people, like Emilie, who took the time to comment on my blog:

Heres’s a good comment to read – your piece made me melt. Well done and thank you for sharing your past pain and healing with strangers. Keep writing!

Emilie is the person you are writing for.  Keep the her in your heart and banish the trolls to the remote mountains of Norway, where they belong.  As someone once wise told me:  if you don’t play the game (of engaging with any asshole in life), you can’t ever lose.  So no need to jump to my defence – I’ve checked out of the comment reading game.  Oblivion is bliss.

Ps:  for a much more thoughtful essay about trolls, read Stephanie Wittels Wachs’ super piece in Vox called My brother died of a heroin overdose.  Internet trolls wouldn’t let us grieve.