the damn silos

silos

There is a lot of talk about The Silos in our world of kids with disabilities.  The first few weeks after we moved to British Columbia, we were in a rosy state of honeymoon.  We had found Aaron a school that accepted and believed in him, and all was well.

Then reality started creeping in.  In Alberta, I had childcare, respite, a pediatrician, a pediatric dentist, an audiologist, a psychologist, an optometrist, a behaviour coach, Special Olympics, other adapted recreation programs and a social communications program all set up for our boy.

In this new province, I am starting from scratch.  It feels like when Aaron was first diagnosed, but this time (thankfully), I’m not in the midst of thick grief and juggling a newborn baby and his young siblings while I’m filling out forms and running around to appointments.  I’m 12 years wiser, but still incredibly frustrated because I know the people in the systems can do better.    

Here’s what I have written in my ‘to do’ scribbler:

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Eight weeks into living here, and this is a MESS.  I can’t secure funding for after-school care for Aaron, and the daycare won’t even consider him without funding.  For some reason, the school wants another audiology test, even though he had one in January.  The psychologist wants to give him an IQ test so he can get funding for high school (um, NO). Our awesome nurse coordinator back in Alberta requested a referral to a pediatrician here, but I haven’t heard anything back.  We have to go to yet another ministry to apply for respite funding, but I haven’t heard back yet either.  Back in Alberta, the ‘Family Support for Disabilities’ (I put that in quote because they don’t actually support families) people with the Ministry of Human Services rejected our application for funding for Aaron’s dental surgery that happened in February because we did not get all their (stupid) forms filled out and signed before surgery  (plus they sent me the wrong form to begin with and I got it all signed and then had to start all over again when they sent it back, rejected) because he had surgery very quickly because we took a cancellation spot.  We are waiting to hear if he’s been accepted for a week long overnight Down syndrome summer camp (thankfully my lovely Alberta pediatrician filled out the medical form for us because we do not have a pediatrician here yet – see above) but the Nursing Director has to ‘approve’ him.  To travel on the ferry at the ‘disabled’ discount, we have to fill out a form proving his disability and we do not have a doctor to fill out the form (see above).  I am waiting to hear if an awesome-sounding summer day camp will accept him, because he’s 12, not 13.  People don’t return my calls or emails, show up for our pre-scheduled phone meetings, and I spent hours each week just following up on something I’ve already initiated.

This is what The Silos look like in real life.  And this is for a kid who only has Down syndrome – he does not, thankfully, have any active medical concerns right now.  (Although he did get bit by a tick last week, but seems fine thank goodness because he does not even have a doctor to go to).

This whole mess is infuriating and frustrating.  They send me forms and I dutifully fill them out and mail them back and then they send me a letter telling me to refill out forms that I’ve already filled out.  I am so sick of filling out forms and photocopying paper and walking to the mailbox because nothing is electronic and spending my days off in ‘intake’ meetings repeating the same information over and over about my child and convincing them that he’s either:  not very disabled or super disabled so that we can access their programs.

And I actually WORK in a children’s hospital and have some understanding about how to ‘navigate’ this damn system. We can even pay out of pocket if we have to. (And what of the families who do not have my advantages?  I fear they are just lost forever, laying at the bottom of some Damn Silo).

But when I consider all I’ve written above, I just want to crawl back into bed.

WHAT IS THE SOLUTION TO THE SILOS?

Yes, please, leaders in health, education and child and family development, please keep on meeting and chipping away at these Damn Silos.  This gives me a glimmer of hope for the future, but I’m sad to report that change is not going to happen in Aaron’s generation.  I really hope it does for families behind us in our journey.  These Damn Silos took decades to carefully construct, and they aren’t going to be dismantled anytime soon.

Here are three simple things that I firmly believe we need:

  1. Connection with other families.  If you are working with a new family who has a new diagnosis, or who are new to an area, please find a way to connect us up with other families in our world.
  2. Family leadership and advocacy skills.  Teach us how to effectively make our way around these Damn Silos.
  3. One person who will actually help us. Nobody helps us.  Or, they will help in their little piece of The Silo and then they are done with us.  Or they say they will help us, but then they don’t return emails or phone calls – so that’s not really any help at all, is it?

Note:  these must be done in conjunction – just hiring a ‘navigator’ isn’t going to help if we cannot do things ourselves or be connected with our peers for support.

In future blog posts, I will provide more reflective insight into these three solutions.  I am currently neck deep in the Ranting Stage of Frustration.  I will pop back up once I’m able to be more constructive.  Right now, I’m going to put my head down on my desk and have a little sleep.

an ode to aaron’s ‘helpers’

Aaron had a spectacularly awful day at school yesterday.  In today’s communication book, his lovely Educational Assistant wrote:

ps

That has to be the most awesome, understanding note back from a school ever.  My eyes filled with tears when I read this.

I just want to pause to acknowledge the amazing women who have been what we call ‘Aaron’s Helpers’ over the past six years – Naomi, Anne and Debbie.  (And before Grade 1, Lisa and Jess).   These folks have used their skill, patience and creativity to work with our son for five hours a day, ten months a year.  Aaron is pretty good at testing skill, patience and creativity, but they have stepped up to be kind, compassionate and understanding with our boy.  If Aaron had a rotten day, Anne, his EA from his school in Edmonton, would always say:

tomorrow

I believe Educational Assistants are educators, too – in fact, they are responsible for delivering curriculum to our kids in a way they will understand.  They get to know our kids really really well – for better and for worse.  I know they don’t get paid much, and sometimes see us parents frustrated and angry.  I hope they know how much they mean to us, and that we remember to say thank you to them along the way.

 

being quiet and humble and good

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I read the essay A Moral Bucket List by David Brooks in the New York Times last week. I shouted YES after I finished reading it. I might have even pumped my fist in the air. This one is a keeper, and I officially will add it to my Gospel of Really Good Writing That Tells The Truth.

There are so many gold nuggets of phrases and ideas in this piece that you should just go read it yourself. Brooks talks about collecting virtues that you’d want mentioned in your eulogy, like being brave, honest and faithful. He says that suffering introduces you to yourself and reminds you that you are not the person you thought you were. And this: ‘…and at moments of rare joy…the ego rests.’

If you’ve never been humbled in your life, don’t bother reading this because it will make absolutely no sense to you at all.

Yesterday, a scrabbly-looking old man came up to me in Langley asking for directions. Now I’ve been to Langley like twice in my entire life, so I’m hardly a local. But I knew that he had just asked some other people to help him, and they had turned him away. So he and I stood and looked at the address on the envelope he was holding. I punched the numbers into the map app on my phone. I asked him if he was walking or driving. Walking, he said. We figured out the address was a six minute walk, and I pointed the way, citing landmarks. He was so relieved I helped him. It took all of four minutes of my time. Afterward this simple task, I felt as if I had contributed some material towards my eulogy.

But before my head gets too big, I also like to remind myself how I have fallen.

I try to be kind, but if people piss me off, I’m not kind at all. I do not feel kind towards my husband’s ex-wife or certain politicians, for instance. I also feel no kindness towards the psychologist who wants to administer an IQ test to my kid with Down syndrome. (In fact, part of my demonstration of unkindness is mentioning these people in this piece). See what I mean? If you wrong me, I will also write about you. That’s not a very nice thing to do.

I’ve also yelled at my kids, especially my older ones. I made some bad dating decisions when I was a single mom. I’m flawed in my relationship with food. I try to be brave, but am a bundle of anxiety before speaking engagements. I like nice hotels a bit too much. My ego gets in the way when I want to shout: DO YOU KNOW WHERE I HAVE BEEN PUBLISHED? (That’s terrible, I know. I’ve never actually said that out loud, but I’ve thought it a few times).  I check my Facebook, Instagram and Twitter feeds for notifications too often.

I think David Brooks would say this is all ok because I realize my limitations and I work to overcome them. I am so very passionate about love, kindness and compassion in health care that I do not even bother to contain this passion, and I have turned into one of those lucky people who does what she loves for a living. I hope this drives me towards the good, if I can keep my damn ego and that voice that administers negative self-talk out of the way. I feel extremely lucky most of the time, and sometimes I even feel blessed.

I’m going to keep aspiring to be a ‘stumbler.’ If we are lurching through life unbalanced, that means we have dropped all notion of even attempting to be perfect or normal. (Both of which do not exist by the way).  I’ve significantly pushed off my pedestal twice:  once when my first marriage split up, and another when my youngest kid was born with a disability.  And then I’ve been pushed off so many times since that I don’t even bother crawling back up there anymore.

I’ve also had glimpses into those beautiful moments of true joy, where I realized that life is not in black and white – it exists in a stunning rainbow of colour. These moments only come when we open our hearts to everybody, including ourselves.

You see, there is an invisible current of life, just below the surface.  If you are quiet and humble and good, you will soon discover that secret place – that’s where all the magic lives.

beauty as a social determinant of health

A mural in the Mission neighbourhood, San Francisco.

A mural in the Mission neighbourhood, San Francisco.

Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere. – Lisa Bonchek Adams

I once heard a nun speak on a panel at a health conference. She served people who lived in the neighbourhoods of north-central Winnipeg. I lived in Winnipeg for six years, and I can tell you that the neighbourhoods north of Sherbrook are notorious for their poverty and crime rates. And while it is easy to dismiss an entire neighbourhood because of its reputation, this lovely woman reminded us that people live in that neighbourhood. Real live people. Who are making the best with what they have, just like you and me.

The panel was about the social determinants of health. And while most panelists droned on about the typical determinants of health, like income, education, employment and housing, she took a different approach. Beauty, she said. We all need more beauty in our worlds.

Lift your head, and look around at your own city’s inner city. What do you see and hear there? Concrete, garbage and sirens. No gardens or art or innovative architecture or music. These areas are conspicuously void of beauty. And how do you feel when you look at concrete and garbage and hear unending sirens? Ugly surroundings compound any ugliness you might feel inside.

This conference was many years ago, and I have never forgotten this assertion: beauty helps our mental health. Beauty is healing. We feel better when we can see art and colour and nature in full bloom. Beauty should not be relegated to the upper class. We feel more committed to where we live when we feel good about where we live. As Lisa Bonchek Adams says above – find a bit of beauty in the world today. For people who struggle to find the beauty, it is our job to help them discover it.

Right now I’m typing this essay while sitting in the sun, and gazing out towards the shimmering Lake Okanagan. I can hear sparrows singing their songs, and the wind is rustling the spring blossoms on the trees. I am calm and relaxed. Life is showing its goodness all around me. I know nothing about urban planning, public art or community gardening. I only know that we all need more of these beautiful things in our messed up (and potentially beautiful) world.

be still

Yesterday, I was brewing on a blip with the system that we’ve encountered since moving to Vancouver.  The school’s daycare refuses to consider Aaron for before/after school care unless he ‘secures his own funding’.  And the wait list for government funding for childcare for kids with disabilities is months, even years, for a kid his age.  This lack of care, of course, affects our work schedules in a dire way.

Ruminating on this stupid fact sent me spiralling into a rage.  This rage started to border on outrage, and I began furiously texting my (one) friend here about this great injustice, and feeling meanness wash over me.  I started fixating on all the things that were wrong in my life, like being far away from my beloved Ella, and missing her deeply every day.  I started fretting about my eldest son, who is in scarce email touch and somewhere in America on tour with his band.  The thought started creeping in that I wasn’t creating change fast enough in my new job.  That I had to practice my talk for an upcoming conference.  That the toilet upstairs wasn’t flushing properly.  Then I looked down at my jiggly thighs.  You know that this thread of negative thoughts was going nowhere fast.

I didn’t like feeling that way.  I know of some people who are permanently in a state of rage, and I’m sad for them.  But I also see how easy it is to push over that edge.

So in the midst of my self hate-talk, I laid on my bed and did this:

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be still

Not ironically, I won this picture in a door prize at a special needs mom spa day that my (one) friend here kindly invited me to last month.  It was a lovely day of pedicures, massages and nice food.  And bonus, I even won a coveted door prize that is now hanging in my office at work.

Wait, I have an actual office at work?  With a window?  And a walls to hang pictures up on?  Yes I do.  And I have a job with flexible hours and wide autonomy, where my arrival from Edmonton was trumpeted by a great welcome from the staff?  Uh-huh.  And this job brought our family to Vancouver, land of blossoming cherry trees and mountains and excellent sushi and infinite beauty?  And we are now living close to my only brother and his wonderful family, including my little two year old niece Olive?  And I am now closer to my mom and dad on Vancouver Island than I have in 20 years, and I’m awfully happy about that because we are all getting older?  Yes, yes and yes.

All this occurred to me when I was being still on my bed.  I remembered all the kindnesses that have been bestowed on us over the past month – how other moms that I barely know have given me hugs, so easily welcomed me into their circles, taken me for coffee, and helped me figure out the lay of the land.   When I was still, I could feel that rage about the daycare dissolving away.

Then yesterday my brother took Aaron out for his 12th birthday gift.  I should note that Aaron is obsessed by luxury cars.  He tells me he’s going to work at a Mercedes store when he grows up.

His Uncle Geoff took him to a Porsche dealership, where Aaron took a tour, was feted by the sales staff there, and given a Porsche hat and model car.  Geoff’s friend James whisked Aaron off for a speedy drive through the streets of Vancouver in his brand new red Porsche.  Aaron arrived home very pleased after his birthday experience.  At dinner, I asked him:  How was the tour of the dealership?  How was the ride in the Porsche?

Aaron looked at me, his mouth full of pizza, and said:  Lucky.

I said, lucky?

I am lucky, he repeated.

He is a lucky kid.  I am a lucky mom.  We are all lucky. The next time I am starting to forget that, I’m just going to be still for a while.  I think that’s when I find the peace in my heart.

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aaron not touching the $1.4 million Porsche.

 

girl in a band – the book

girlinabandI bought Kim Gordon’s Girl in a Band book in the futile hope that I would understand my eldest son.  He’s a boy in a punk band in LA and is currently on tour somewhere in the midwest.

I have never been a girl in a band, although I was once married to a man in a band, and spent many evenings sitting at a bar at 2 am with the other band spouses waiting for the band to take the stage.  I was their occasional studio accordion player and co-wrote songs like ‘How Does it Feel to Be Neil’ (this was a song about my own dad, who is a very interesting guy).

I do stand on stage now, sometimes, but my audience isn’t a mosh pit.  It is a room full of  Emergency Room doctors or pharmacists.   What Kim says about performing was fascinating to me:

Greil Marcus says, “people pay money to see others believe in themselves.”  Meaning, the more chance you can fall down in public, the more value the culture places on what you do.

Kim says that performing is fearless.  Regarding public speaking, I always say there’s a fine line between being stupid and brave.  I try to err on the brave side of things but don’t always succeed.  But yes, the awe bestowed on people who step on a stage is due to that risk that we might fail in an epic, very public way.  This is everybody’s worst nightmare (and in fact, I have my own recurring nightmare that I’ve forgotten my speaking notes at an important presentation, and that I can’t remember what I wanted to say).  Allowing yourself to be vulnerable in front of a group of strangers is a high risk, high reward thing to do for a living.

I did glean one insight about my son from the book.  He’s a boy who left home at age 18 and then moved even farther from home, thousands of miles away, two years later.

Kim Gordon says:  I couldn’t find out who I really was until I left LA and my family.  Until that day arrived, I was just waiting, suspended.  Families are like little villages.  You know where everything is, you know how everything works, your identity is fixed, and you really can’t leave or connect with anything or anybody outside, until you are physically no longer there.

To me, this says to those hanging onto your adult children, it is time to let them go.  It will be the most painful thing you have ever done and it doesn’t mean you will stop being a parent. But, as the inspirational saying says, you’ve given them roots and now it is time to grant them their wings so they can fly.

I stopped writing book reviews many years ago.  (Here’s a real review).  I will say that Girl in a Band is a factual and chronological book.  I was craving to discover how it felt to be a girl in a band, but I didn’t ever find out.  I learned the steps it takes to become a successful band, and Kim did provide passionate descriptions of Kurt Cobain and the sad break up with her husband.  But it was as if she was still in the thick of things with the dissolving of both her band and her marriage, and she hadn’t been given the space yet to reflect.  Perhaps her next book will provide those insights.  In the meantime, if you are a girl in a band, or a Sonic Youth fan, you will like this book.  For the rest of us, I’d say garnering one or two nuggets from any writing, as I did, is reason enough to pick up a book and just read.