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.

so much lemonade

See, when it starts to fall apart
Man, it really falls apart.
-The Tragically Hip

Today I’m digging around for all the books that give me comfort my time of need:  Anne Lamott’s Travelling Mercies, Elizabeth Lesser’s Broken Open.  I ate some carbs.  I went for a crunching walk on this sunny fall day.  This helped too.

I’m recovering from yesterday’s crying hangover.  This morning I painstakingly typed out a letter of resignation from my paid work position, after a particularly hard meeting with my boss.  I even watched this deodorant commercial for inspiration, but it didn’t help me one bit.

I’m moving back exclusively into the freelance-consulting world.  In hockey terms, I’ll be a free agent as of November 4.  There was a slippery slope starting with my husband leaving his working-from-home position last March for a ‘must show up in person’ one, and my subsequent leave of absence this summer.  This led to the difficult decision that I need to transition back to working from home to be a support for our youngest son, who happens to have a disability and who happens to be 13, too old for childcare, not able to get special needs childcare funding, not able to be left alone, in a school district that has significantly shortened teaching hours for kids with disabilities (pick up at 2:30 pm because they don’t have funding for Educational Assistants?  REALLY CHRISTIE CLARK?).  Well, I’ve ranted about all this crap before.  My boy needs me and that’s enough.

In my resignation letter, I added this punch:

The reason for my resignation is that I require that my work be flexible and based from home to support my youngest son. This is directly due to the lack of family support that exists in British Columbia for parents of children with disabilities.

This made me feel marginally better, although I know that nobody cares. It really bothers me that my choice to be in the paid workforce has been taken from me.  However, this also makes me acutely aware of my own privilege. I am in a relationship where my partner makes a decent income, so I have the option to move back into freelancing.  What of people who don’t have this luxury?  This is how the government forces people who have disabilities or those who are caring for people with disabilities into poverty.  How is this ok?  This is not ok.  What am I going to do about it?  I don’t know.  I guess I will have some time on my hands to figure that out.

But for a while, I am going to hang up my supermom cape.  Someone else can take over changing the world because that turned out to be rather short-lived this time around. I still hang tightly onto the belief that we will change the health care world only through love and compassion.

I’m working on a long-awaited book project.  I’m slowly getting more known in BC health conference circles, and have a number of scheduled speaking engagements.  I might eat more sushi and take more baths.  Importantly, I’ll pick my boy up from school, and we will stop at Tim’s by the high school for iced caps, where the ladies remember his order.  He’ll talk to me about his day as we zoom back home up the mountain before he catches himself chatting with his mother and announces to himself:  SILENCE AARON.  We will catch up on Born This Way episodes on PVR and eat popcorn in bed while we wait for his dad to return from his work. We’ll putter around in the kitchen, listening to soul music and preparing supper, where he has been crowned my capable sous chef.

The system has thrown a number of hard, rotten lemons at my head and I’m bruised and worn. But from that, I’m trying to make some pretty sweet lemonade.  I believe with all my heart that our best revenge for daring to have a kid with a disability is to orchestrate a happy, well-lived life – systems and society and governments be damned.  Love to all the families out there struggling to gain the same balance.  Know that you are not alone.

you must go on

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Today I left my son’s doctor’s appointment under the crushing weight of disappointment.  This was a follow up appointment to discuss a number of referrals for Aaron.  Here are the various statuses:

  1. On a wait list for an indeterminable amount of time.
  2. Another referral is ‘being reviewed’ – he isn’t even on the wait list yet.  (A pre-wait list?). Once he hits the list (if ever), the wait list is many months long.
  3. One service is $190/hour.  Another is $100/hour.  Yet another is $85/hour.
  4. The recommendations from the health care professional report won’t be funded by the school.
  5. We can’t get him into a publicly funded service because the ministry won’t open a file for us.
  6. Our doctor recommended we take the private, expensive options because the public system is of such low quality.

I slunk out of that appointment, my head hung low, my heart heavy.  Aaron was excited about a promised Dairy Queen lunch, so I stood taller, put a smile on my face and did my best to be a good mom.

I’m feeling raw and uncensored.  In response to this Maclean’s article (sure enough, alluding to the ‘risk’ of Down syndrome, a chromosomal ‘abnormality’), I tweeted:  Stop saying this shit.  I’ve been revisiting Aaron’s experience with inclusion (or lack thereof) when we were interviewed for this Globe and Mail article.  Frankly, those memories of Grade 1 bullies, dried up birthday party invites and general exclusion have been a real bummer.

The school informs me that his new special ed program doesn’t begin until mid-September, drop off time is 9 am (except for Wednesdays when it is 9:30 am) and pick up is 2:25 pm.   I’m not sure how I’m supposed to work – from 10 am to 1:45 pm?  I asked the teacher what other parents did before/after school (since our kids are over 12 and not eligible for daycare – not like we were eligible for that anyhow since the wait list for supported childcare is so long) and she told me:  well, most of the families have autism funding.  Well, sadly my kid has the wrong diagnosis for any sort of funding in this province.  Another fail.

NONE of this is Aaron’s fault.  We might blame the system, but the system is made up of people – living, breathing people – who make decisions that affect the real lives of families. I work inside that system.  This first hand experience makes me feel full of shame, for I am the system too.   I catch myself inching towards the mean and bitter mom category when I remember this:

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Oh right.  It is September 1.

After the doctor’s, Aaron hung out with a lovely young university student who was taking him to play basketball, so I went for sushi.  I went for a walk.  I sat in the library. We might not have respite funding, and we can hardly afford this, but dammit, I’m pulling out all of my self-care strategies and feel a bit better, surrounded by books and pounding out all my troubles into my keyboard.

If you are having a hard month too, my friends, you are not alone.  We must solider on, as Samuel Beckett says:

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In the quiet of the library, I remember last Saturday night.  Our next door neighbour invited me to a yoga class on her terrace under the setting sun. Afterwards she and her husband hosted a party, and Aaron and my husband wandered across the hall, bearing antipasto.  Aaron sat on the couch and patiently listened to the adult talk, for he was the only kid there.  One of our neighbours, new to Canada, said to him:  I have a present for you…and gave him a bear whistle.  Take this with you, she whispered.  If you see a bear, or if anybody is a bully to you, blow it loud.  Aaron nodded, cared for by this sweet sentiment.

Later, Nina Simone played on the stereo.  Our hosts got up to dance, their arms comfortably entwined around each other after 40 years of marriage.  Aaron watched them carefully, and then another neighbour asked him to dance, and then another.  He accepted, shyly.  I’ll never forget how pleased he looked, dancing with the ladies in that little living room.  This memory is like magic.  If I close my eyes and remember, it erases all the wait lists, our depleting money, the lack of access …it is all gone.  It is only my youngest boy slowly dancing with a kind lady, a slow smile spreading across his face, knowing full in his heart that he belongs, right here and right now.  He’s conquered the world with his very being, and we are both at once at peace.

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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.