from cruise ship to dinghy

Slide1There’s a familiar saying that floats around the our world about education services for our kids.  It speaks directly to moving from the preschool to the elementary school experience – we call it jumping from a cruise ship to dinghy, because almost all the therapy support from the schools dries up after kindergarten.

I was preparing to speak as a mom about transitions Saturday at a CHILD-BRIGHT workshop.  Now ‘transitions’ is a term the health professional world loves, and it is a more evolved term about being discharged from one service and moving into another.  (I especially detest the word ‘discharged’ and I’m glad they are moving away from it – as it reminds me of nasal discharge or discharge of the vaginal kind, or being spit out at the side of the New Jersey Turnpike, a la Being John Malkovich).

The word ‘transitions’ to me means change.  The professionals tend to put their own provider-centred lens on that, assuming this means moving from one of their programs to another.  To me, families should be the ones identifying what transitions are important to them.  For instance, for me, moving from the end of the school year to summer is a horrible transition, as I have to dig around trying to find childcare for my son so I can go to work. (This year I failed at that).  Another transition would be our move to a new home earlier this summer.  My boy’s adulthood is impending, so I’ve run around, panicked, trying to find my son a family doctor who will see him as he turns 19.  Each school year brings a new transition, with a new teacher and new Educational Assistants in Aaron’s life.  These are the transitions that matter to me.

I’ve never been accused of being subtle.  To take the cruise ship to dinghy metaphor a bit further, I created this cheeky image (above) which I showed to the workshop audience, a group of researchers and health professionals.

For me, this is what services for families and children with disabilities looks like throughout the years.  The last image is yes, someone drowning – and that is what looming adulthood feels like.  As I told the audience, the most important part of their work is to get a deep realization about what it feels like to be a family member afloat at sea. Change will only happen once they feel what we feel.  As pediatrician and IHI co-founder Don Berwick says in his 2014 book of his keynote presentations called Promising Change:

…”(change will happen)…when we realize that our white coats and our dark suits are disguises…our next big step is not to just serve people but to join them.

Services in the system – from cruise ship to drowning.  Pause for a moment to join me to feel what that might feel like to a family who has a child with a disability.  When that feeling finally touches your heart, then we can start to talk about change.

the leave

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Each morning we wake up at our leisure, sit on the red couch and write our plan for the day in my little coil scribbler.

It often starts with an egg salad sandwich for breakfast and moves to ‘Mom work’ which means me closing myself in a windowless office for two hours to write while Aaron watches obnoxiously-loud Johnny Test on TV.  Then electronics off and we begin our time together.  The day stretches out before us like a prairie sky.

My mantras this summer, the summer of my leave, are this:
1. Stay in the moment
2. Move at Aaron’s pace

I rue the day 15 years ago when I said, in response to yelling at my then 5 + 8 year old children:  I wish I was a more patient mom.  The Baby Gods heard me and two years later they brought me a third child named Aaron.  I’ve calculated a direct correlation:  the faster I try to move Aaron along, the slower he goes.

So slow we go.  We pick one nature outing a day and sandwich that with meals, errands and meandering strolls.  I distinctly feel as if I’ve regressed ten years and am at home with a toddler instead of a budding teenager.  Aaron craves both routine and unstructured time with his people of comfort.  Why did I think I could sign him up for a variety of day camps, just like other moms do with their kids?  This year is a stark reminder that I am not just like other moms and Aaron is not just like other kids.  Even in contemplating this complex web of summer childcare arrangements, I was in denial about our differences. This leave is my humbling, a sign that I was getting too big for my britches.  It also shows me how a lack of childcare options for older children with disabilities pushes families into poverty.  (But that is another topic for another time).

So here we are, making lemonade out of life.  Despite the adolescent defiance, the need to negotiate every move and the mortification of being seen with his mother in public, he sidles up to me at least once a day and says, I love you Mom.  Other days, This is the best day ever.   His relief at not being dropped off at a different summer camp every week, complete with a different routine and different people, is palpable.  And that’s gotta be enough.  Enough for the lost income and the stalled career, for if you really try to live in the moment, you know the moments are soon over and then they are simply gone.

We’ve gone for hikes by canyons with little cousins, played an excessive amount of mini-golf, brought our bird book to the sanctuary to identify our feathered friends, munched on popcorn in dark air conditioned movie theatres.  Right now, I’m sitting on a log by the dog beach (is there anything more glorious than a beach of dogs?) and Aaron has buried himself deep in the coastline forest, emerging victorious with found sticks and talking to them as if they are people, as he’s apt to do.

I’ll add to my mantras ‘Be Weird’ as my boy is often weird (at least to the typically-developing eye) and I struggle with that reality, particularly in public.  My own deep-rooted 13 year old awkward teenage girl fear of being judged pops right to the surface.  When I ask him:  Why are you making that funny sound? he wisely and matter-of-factly tells me:  It is the Down syndrome way.

Today he picked up a black rock and announced:  This is an asteroid!   Then he scrambled up on a big ocean rock and yelled:  THIS ROCK IS REALLY INTENSE MOM!  Last night, munching on a chorizo taco:  This meal is phenomenal!  He doesn’t stop talking in exclamation marks, except when presented with direct questions from boring adults.

[Many years ago, when Aaron was two, I belonged to a playgroup of kids with disabilities. I remember complaining that Aaron would not stop saying:  mom mom mom mom all the time.  Another mom looked at me with sadness in her eyes and said:  I wish my daughter would say my name, even once.  Her little girl had Angelman syndrome and did not talk at all.  I hung my head in shame, my face flush with my own stupidity.  It was the first of many reminders to watch my words and count my blessings].

Aaron couples his love of language with a never-ending string of knock knock jokes:

Aaron: Knock knock.
Me:  Who is there?
Aaron:  G.
Me:  G who?
Aaron:  God.

Me:  Huh?  That’s it?  God?  What does that mean?
Aaron:  … {Shrugs. Sly grin}.

All children offer up both joy and pain, happy and sad.  If I uncensor myself, I will confess that it is easier to be at my work:  dressed up, adult, respected, uninterrupted in the washroom. In my leave I have left that.  I am dressed down, a mom, invisible and interrupted in the washroom.

Aaron and I have eight more weeks together, but I am going to stop counting.  Life, I tip my hat to you: I’ve been knocked off my pedestal once again, but I want to tell you that the view down here ain’t half-bad.

mothers who are tired

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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

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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.