Not One Excuse

Editor’s Note: Our daughter’s school and educational team are extraordinary. We feel fortunate and grateful to have such dedicated educators in our corner and thank them for all their hard work to prepare for our children’s return to school.

It is my expressed wish that not one student with a disability will experience barriers to receiving an inclusive and full educational experience this year.

I’m addressing this piece to no one and to everyone who will listen. This is a projection of my fears as a parent to a child with a disability, magnified, but not unjustified. This piece is not to assign blame or elicit shame or to drag up the past or point a finger or a projection of any behaviour I foresee. The honest sentiments that follow are about how I want to move forward this school year, no excuses. I know I am not alone in having these feelings.

 

I do not want even one excuse to get in the way of my daughter with Down syndrome’s education this year. Parents who have children with disabilities, we are worried about this. I do not want even one excuse. Not a global pandemic. Not a new teacher, a new year, not a new anything. Not my needing to be polite, or to give people time to figure it out on their own that my daughter is able. Not any litany of excuses: we’re getting to know her, she’s tired, we’re just getting back into the swing of things, or list of things they didn’t know about her, because here are the things they need to know about her: …that she should be doing group work, that she should be writing tests, that she should be keeping notes in an agenda with all of her peers; that she can read, that she can write (albeit large – large is okay!) that she can LEARN. That she is an intelligent girl. She may learn differently and at a different rate, but learning differently at our own pace is okay too. People who learn and think differently have drastically changed the world – for the better. Nobody ever questions how long it took them to get there. Different is not an excuse.

I do not want, one more time, to have to go over all of the things that my daughter can do, to have to elucidate her capabilities, one at a time, but my god I will. Because parents of kids with disabilities, if you don’t, if we make assumptions that others understand, if I assume that the teachers’ assumptions are the same assumptions as mine, that Elyse’s educational assistants who spend the day with her know what our expectations are, then, well guess what? Somebody is going to be misinterpreted, and then somebody is going to be left feeling disappointed, and more often than not, it is my daughter, my exceptional daughter, who is going to miss out.

I do not want to hear the excuse of “so-and-so didn’t know.” I am the one who makes that excuse, on behalf of well-meaning individuals, but I’m not going to do that anymore. Because they will know. Because I have told them. Here is what my girl can do. Because they can ask me.

I do not make demands and expect that the school is an island. I set expectations that the school and our household will help meet together. We will read with Elyse at home, no excuses. We can review concepts she’s struggling with at home, no excuses. I will sit down and plan how she can be properly included in her classroom, how to help her participate fully, and I’m happy to do this if it will help my daughter, but what I will not accept is any excuse for why it is not happening. No excuse will do as a substitute for full and proper inclusion and education. Insufficient funding – nope. Insufficient knowledge – nope. A lack of empathy and caring – definitely not.

I will not let my schooling get in the way of my daughter’s schooling. My husband will not let his work get in the way of our daughter’s education. My daughter’s education is not just my responsibility. Mothers are not solely responsible for their child’s education. I repeat: mothers are not solely responsible for their child’s education! No excuses, fathers. No excuses, men. I will not do all of the heavy lifting, but I will carry my fair share of the load.

I do not want one thing to get in the way of my daughter’s education. Not one bias. Not one prejudice. Not one more ableist assumption. Not her sister being in her class, or her glasses fogging up, or wearing a mask or needing to go to the bathroom. I do not want to hear it. Find a way. I will help, and so will my husband, but find a way. There is no excuse for denying a child their right to an accessible and meaningful education. Excuses are a waste of time.

I do not want even one excuse to get in the way of my daughter with Down syndrome’s education.

Genuine situations, honest mistakes, empathy, compassion and kindness, always. But any excuses have got to go.

 

Good, Bad, Who’s to Say?

There are two sides to every coin.  Heads or tails?  Well, depending on the side you are rooting for, which way you’re betting, one side is perceived as ‘good’, the other side as ‘bad’.  This narrative of good and bad plays into so many aspects of our lives, but lately I’ve been thinking about it in the context of how we view others.

I came across an engaging well-thought out TED talk by Heather Lanier (thanks Sue Robins for introducing me to her work) about the problematic nature of framing stories as ‘good’ or ‘bad’.  Lanier explains through the use of an ancient parable that “’Good’ or ‘bad’ are incomplete stories that we tell ourselves.”

The ancient parable of the farmer goes like this:

There once was a man who lived on a farm with his son and his horse.

One day, the barn door was left open and the horse ran away. When the nearby villagers heard about it, they ran to the farm to tell the farmer how sorry they felt for him.

“How will you work your farm without your horse?” they asked.

The farmer simply shrugged and said “good, bad, who’s to say?”

A few days later, the farmer’s horse returned, and following it were two more horses. The villagers were so excited for the farmer’s luck, they ran to his farm and told him so.

The farmer simply shrugged and said “good, bad, who’s to say?”

The new horses were not broken in, so the farmer’s son worked hard to break them in so they could be used on the farm. While doing so, one of the new horses threw him off and his leg was broken.

The villagers again ran to the farm and expressed their deep sadness about the son’s broken leg. “Now your son can’t help you on the farm,” they said with their heads hung low.

The farmer simply shrugged and said “good, bad, who’s to say?”

As the son was healing from his broken leg, a war broke out in the countryside. All the young men were sent to fight. Many died or were seriously injured. However, since the farmer’s son had a broken leg, he was not able to go. The villagers again came to the farm, to say to the farmer how very lucky he was that his son didn’t have to go fight in the war.

Once again, the farmer shrugged his shoulders and stated, “good, bad, who’s to say?”

This parable teaches us to simply be a witness to life’s events.  The idea being that peace is found by observing the events of life and removing all judgement; by sitting back and witnessing without trying to attach labels, and avoiding life’s dramas.

The principle tenant of Buddhism is that craving leads to suffering.  Either craving for something good to last or craving for something bad to end.  One who does not crave, does not suffer – or so the idea goes.  In meditation, the goal is not to judge the thoughts that come into your head, but to let them flow through your mind and watch them from a distance. Thoughts are not labelled as good or bad, nor are they held on to.  They are let go.

Wow.  This all sounds pretty good, doesn’t it?  Letting go of notions of ‘good’ or ‘bad’; meditating and watching all kinds of thoughts float by without attaching meaning or significance.  As a writer, I often try to do the opposite: I latch on to words, haul them in, examine them to death, then stuff them into a basket full of other used thoughts and ideas.  But perhaps I need to loosen up, disassociate from my body a little bit more.  My body is so needy, temperamental; it’s cloistering to the mind.

I received a rejection note this morning for an essay I wrote.  Good or bad, who’s to say?  Maybe the piece will go on to be accepted in a more reputable journal or will lead me to a connection and long-lasting friendship with an editor – who knows?  Maybe it’s eventually printed at a time when the person who needs to read it, reads it.  I can’t help but yearn toward the positive.  However, maybe the essay never gets published.  I have to be satisfied with the idea that the essay just is.  Pain and pleasure, bad and good.

The other day, out on a drive, I turned right at the last minute onto a path I hadn’t planned to go down.  I discovered a beautiful trail; the kids loved it.  Later that day, I swatted at a bug on my knee, assuming it was a horsefly, and got badly stung by a wasp.  So the story goes.  Good or bad, who’s to say?  The key is to remain open; to abstain from judgement.  This is not the same as being passive.  Even meditation – sitting being, seemingly doing nothing – is an intense exercise of the mind.

When I leave for my run this morning, I will either feel good or bad and I’m going to try to not attach meaning to those feelings.  Today’s run doesn’t necessarily signify that I’m a good runner or a bad runner, that I’m in good shape or bad shape, it is just how I’m feeling today, at this particular moment.

I see the value in letting go, but a part of me needs to rebel against this notion of watching our feelings pass by without judgement.  I’m quite attached to my feelings.  I’m all for letting the feelings that are hurtful and painful pass through me, but I’m not so willing to let go of joy and happiness.  I want to fully inhabit my body in these moments.  But we don’t get to choose.  One minute, joy, a new path; the next minute, pain, a wasp sting.  Life is just like that.

When it comes to people though, I see how this principle need apply.  In my own life, the good/bad story has played out like this: the initial Down syndrome diagnosis – pain, bad; getting to know people with Down syndrome – joy, good.  Over and over, in different contexts, the story repeats itself.  My greatest realization of all, through years of reflection and learning to withhold judgement, is that: Down syndrome just is.  And so the story goes.

 

Black Lives Matter

“I can’t breathe.” ~ George Floyd.

Pockets of the United States have descended into chaos in the week since Floyd died in Minneapolis after a white police officer pressed his knee into the 46-year-old black man’s neck. ~The Washington Post

“Peace on the left, justice on the right.” As if to say the two must go hand in hand. ~Terrence Floyd, George Floyd’s younger brother.

I’m having a hard time concentrating.  I want to say something about what has happened, about racism; I want to speak out against the grave injustices of this world, but there is so much I do not know I’m afraid I’ll get it wrong.  I don’t want to offend by not saying the right thing, but I feel a tug, an incessant urging to say something and get over myself, and people are dying – so.

I realize that as an advocate for those with Down syndrome and the disability community, there is one core tenant of advocacy that I hold dear: the view that all human beings are equal.  That I hold people with equal weight in my head and my heart.  I believe in this mantra, we are equal, we are one, but if what has happened and reading the news and following threads on Twitter has taught me anything, it is that there are just some things you cannot see unless it is happening to you.  I am not a black man or a black woman, and so I can’t speak to that experience; I can only seek to educate myself as to how people of a darker skin colour than mine inhabit the world.  I want to know.  And I don’t want or seek to speak for black people – or a person of any skin colour – any more than I desire to speak on behalf of the disability community.  As an able-bodied white woman, I can be but an ally, a supporter.  I would like to declare myself as such.  That means I am actively going to seek out a black perspective in the books I choose to read for myself and for my children, in who I choose to follow, in the diversity of the people I admire and learn from.  The more we know about each other, the more we know about ourselves.  The more we see ourselves in the other, the more fully human we become, I believe.

And sometimes I get so angry about the way we, society, treat skin colour; the same way I feel angry about how people are judged based on their cognitive ability.  The amount of melanin in a person’s skin; the count of a person’s chromosomes; the size of their frame; the sex or gender of their partner.  These factors do not define the person as a whole.  We are more than our bodies.  We are beings of heart and soul.  And our bodies, in all their shapes, sizes, orientations, limitations, colours and creations are beautiful; we are flowers, the fruits and labours of love.  And my soul is aching, wholly aching, for the pain needlessly caused because of hatred for ‘the other’.

“Injustice anywhere is a threat to justice everywhere.”  Martin Luther King said that.  I saw those words written on the side of a building once and they said something to me about how I felt deep down inside.  I’ve mentioned those words before, but they come back to me now because there are injustices occurring everywhere and I can’t pretend – don’t want to pretend – I don’t see.  There are so many people whom I love and care about who have black skin: people I’ve worked with and who are in my family, who’ve married my friends and who are my friends; people I write with or who live in my neighbourhood and I don’t want to let them down.  If I have a voice anyone is listening to, then I want to use it for good.  We have that choice.  Those of us with privilege.

I don’t believe in black and white narratives of good guys and bad guys.  That all bad guys are white and good guys are black, or vice versa.  There are black men who have done wrong and black men who have become president and done so much right.  There are white men who have done right and there are white men who have done so much wrong and become president.  Privilege.  Power.  Those who abuse it.  Those are truths I believe in.  I don’t believe in black or white narratives, but I do believe in things I can’t see, that can only be felt.  I do believe in a racism so ingrained in our society, we can’t even pinpoint it, but we can feel it; we know it exists and we cannot sit idly by.  Because when it slips out, becomes seen, it is deadly.

George Floyd is killed on camera for the world to see; and we do see it, we see it plain as day, right there on the street.  “You’re killing him, stop!” wasn’t enough.  Simply asking wasn’t enough.  His murder is a crime against humanity.  Against men and women, mothers and children everywhere.  George Floyd was somebody’s son.  He was once held, a babe, safe in his mother’s arms against her warm chest.  One of his final words was “mama,” he cried for her, for help.  Nobody saved him.  A man took his life.  And now we are left to weep.  We are left to weep and wonder what could I have done?  We rightly wonder, what can I do differently now?

We can raise our voices to denounce hate.  Even the hate lurking that we cannot see.  We can actively seek out the voices of the other.  What do black activists have to say?  Those are the voices I want to lean in to right now. Those are the voices who have my ear.

And if you aren’t an ally to the other, you aren’t an ally of mine.

 

What Would Happen?

What would happen if you followed your dreams?

 What would happen if you followed not just your dreams, but that little voice in your head, the one you want to ignore because it completely throws the balance of your life into chaos; that voice with the cord that attaches itself all the way down to your heart.  And when that heartstring is pulled, there is no ignoring its song because it’s playing your tune, the tune of who you truly are.

What would happen if your baby was born with Down syndrome and that caused you to question many long-held beliefs that had you standing on shaky ground.  Would you then look around at the people standing next to you anew, with a startling clarity?  Would you live your life differently, follow a different path?  Maybe.

What would happen next?  Well, your baby would be born and you would be a mother or father, of course.  Personally, I have never really embraced the term ‘special needs mom’, but if that floats your boat, you do you.

You would research the proper use of language to be able to use it correctly with your own child.  Was it ‘Down syndrome’ or ‘Down’s syndrome’?  A person with Down syndrome (lower case ‘s’) is the correctly spelling and usage in North America, while in the UK, Down’s syndrome spelled with an apostrophe is the norm.  You would read and you would learn and, something new – or perhaps, not new, just reimagined – you would write.  You would write a blog and one day – today! – you would have been writing that blog for almost nine years, because you started when your first born came along as a way to keep in touch with family far away.

Then what if that blog became something more to you?  What if that blog became a story you needed to tell the world?  What if you wrote a newspaper article, just one.  Just one measly article – what could it hurt?  And what if the rush from that one published measly article and your hope to help create a more just society for your daughter would then inspire you to write more, to keep going, to dig deeper, to settle right into advocacy work.  And what if then, you joined a board of a local Down syndrome association and you met families, many wonderful families, who have children with Down syndrome, families you may never have been fortunate enough to have met otherwise, but they didn’t really have a regular place to meet – so what if you set that up?  What if you coordinated a meeting place and what if you showed up there, who else might you meet?  And what other stories would be told?  Many.  And what if those stories filled your head and some danced for joy and others sank with sorrow into a sea of tears that needed to overflow onto the page?  What if you could write about…all of this.

What would happen if you looked for a memoir on the bookstore shelf written by a mother who had a child with Down syndrome…but there were none, well, when you dug deeper, there were a few, but none quite as young or Canadian or as uniquely…you.  None with your story to tell.  Well then.

What if, scene by scene, chapter by chapter, you began to write your story down.  What if your story were to unfold before your very eyes as you devoured books on disability and memoir.  What if you read one hundred books a year, for three years in a row, mostly memoir – would you know how to write your own then?

What if you could receive an education by doing, by living, and by reading voraciously?  What would happen if you threw in every ounce of emotion you ever felt (leaving room for the emotions of the reader: pro tip), and let it simmer for a while, for a few years and then when you were in the exact right place in your life, which is to say, pregnant and planning to move, which is to say – right in the middle of it – you were to write that book, the story of receiving a prenatal diagnosis of Down syndrome with your daughter?

And during the process of writing a memoir, what if you were to learn something?  About storytelling, and time management, and publication, and copy editing, and narrative arc and plot and weaving in themes and cutting out crap.  What if you were to learn something that could be useful to others beyond the obvious of getting that book about Down syndrome out into the word?  What if you could find your voice.

What if, in the process of writing your memoir, you dreamed up a whole new career for yourself.  What would happen if writing became more than therapy, if it became your lifeblood?

Just what might happen if you decided to take writing seriously?  You couldn’t do that, could you.  That might be too selfish, play too directly into your deepest desires – or could you?  Well, if you keep writing, if you work hard at it, you might just face a whole lot of rejection, and then you might get published in a magazine or two, and you might see more of your name online and in print, and one day, (hopefully soon), you will see your book published, the one that took you three years to write.  And by that point you may very well think of yourself as a writer.

You might decide that while writing is writing and writing is everything, that money and making a living is important too.  You might become an editor on the side and of course, given your background and inclinations, you might consider furthering your qualifications and continuing your education to better be able to teach writing.  You might then consider getting your Master of Fine Arts in creative nonfiction, because you’ve always wanted to do your Masters, you love education, and while you’re waiting to do that, because your children are still growing up, why not travel the world with them?  You never know what could happen, so better plan that trip fast.  What if your travel agent should tragically pass away, would that thrust you into action?  It did for me.

And what would happen, if you decided that you love to write so much you’d like to attend a writer’s retreat?  Let me rephrase that with the truth.  You want to go to a writer’s retreat so that you can learn how to run your own.  Then what would happen if you just went ahead and ran your own writer’s retreat anyway?  Would anybody come?  Would anybody care?  In other words, if you build it, would they come?  And would you come into contact with more wonderful writers?  Would you have a chance to share new viewpoints and explore the world through the eyes of these dazzling women?  You would.

Then what would happen if you wanted to keep your retreat going.  If running a writer’s retreat became an important way to connect with others and use your skills as a teacher and a learner and a writer.  What would happen if you one day envisioned hosting retreats of your own, in your very own special place?

Then one day, what would happen if the world as you knew it fell apart.  If all sense of normalcy was erased.  Would you crumple to the floor and refuse to get up?  That would be understandable, if that’s where you needed to lie.  And some days you do.  You lay there motionless, watching the world pass you by.

But what if you held onto hope, and let the heartstring pull and listened hard to your own inner music?  Might you remember your retreat, and the second book you are going to write and the MFA program you got accepted into and the people who are counting on you?  Even if no one is counting on you, what would happen if you rooted for yourself?  Became your own biggest fan?  You’re #1 – go me!  What would happen if the cheers in your head became louder than all the noise of the outside world?  Not in denial, but in defiance and with reverence to all that you are and can be.

What if you thought about buying your family a pool with the money from all the cancelled plans of the summer, but then instead you thought, no, I want to buy a cottage. What if that would cost you everything you had, but would bring you closer to the people you loved?  To the nature and the water you worshipped?  To following your dreams and dancing to the tune of your heartstring.

Would you listen?

I think I just did.

 

Loss: Tending to the Rose Garden

Loss.  The idea came to me in hazy form one afternoon, but I had no time to jot down notes, to ease into the topic and now it’s five a.m. and while my body needs time to boot up, so too is my brain sluggish at this time of day.  I’m becoming accustomed to early mornings; I’ve been rising early all week and attempting to make the change both mentally and physically.  It’s the time I have, so I will use it well.  And that is the idea of this blog: that what has been lost, will be found, though often regained in some other form.  We are here to talk about roses.

For every loss I’ve experienced in my life there has been something I have gained from the experience.  I can’t say this is true for everyone, but for me, this has been the case.  The key to accepting my losses and moving forward to find the good has been perspective – finding the roses.  There is no doubt gaining perspective has cost me dearly.

There are the losses I’ve experienced lately:

The loss of time; I’ve learned to appreciate the time I do have and be more flexible.

The loss of routine; we have had to reconstruct our new normal and in the process are able to appreciate the relative ease of life before when casually picking up a few items from the grocery store was no big deal.

The loss of peace; we are working on nurturing each member of our family and ourselves.  On addressing each of our needs.

The loss of space; this one is a hard one for me.  I’m still working this one out.

In the past, I’ve dealt with the loss of a loved one.  While loss isn’t easy, and even when we do gain something from that loss, that does not mean to say the pain is diminished.  Since losing my maternal grandmother, I have found new ways to connect with her after she is gone.  Through cross-stitching – an art she taught me – and thinking of her, to sensing her spirit in the rabbit outside my window.  Though she is gone, and while her loss is real and felt, our relationship has not been broken, it has been transformed.

Loss is relative.  While it is true, we will all lose our lives eventually, we have today to gain in the meantime.  Focus on what you can do today.

I once thought I had lost the child I was expecting.  I experienced a loss of normalcy and I was devastated.  Down syndrome was not what I had planned.  But over time I was able to see I had more to gain than I had ever lost.  The power of that perceived loss transformed me in ways unimaginable, has pushed me to travel and see the world, to be more accepting of those around me and to become an advocate for those of differing abilities; to be a writer and become the person I was meant to be.  I can’t say I saw all that coming when I was pregnant though.  I can’t say I saw any of it coming.  I can’t promise you that your losses will bring you great things.  But hold it in your heart that it is possible that what you perceive as a loss today, may one day be your greatest blessing.

I’m thinking about loss after finishing listening to Still: A Memoir of Love, Loss, and Motherhood by Emma Hansen.  In Still, Emma Hansen relives for us the painful experience of losing her son Reid who is stillborn at 40 weeks.  A body, a life, so fully formed, to never experience the light of day or the feel of the breeze on his skin.  There is no reconciling this loss, but Emma does survive it.  She goes on to have another baby, after much difficulty, and then at two days old this second baby turns blue and is rushed to hospital.  If you want to know what happens keep reading, if not, and you think you’d like to read the book, skip to the * below.  Because of losing Reid the way she did (he was born with a true knot in his umbilical cord) Emma and her husband had felt helpless and they were determined to be prepared for this next baby.  They had taken an infant CPR course and once home from the hospital after giving birth, Emma had been watching her baby like a hawk.  She acknowledges that the experience of losing her first child enabled her to act quickly and save the life of her second.  The beauty of Everett’s big brother Reid looking out for him from above and beyond is not lost on me here.

*Oh, hello.  We’re back together.  Loss seems irreparable, and likely the pain will dwell with you for a long time, perhaps forever.  There is no promise that the pain will recede, just that there will be more to come; there will be an after.  There is no replacing the pain, just as there is no replacing the loss of a loved one, but over time, and perhaps with a shift of perspective, there will be beauty once more; there will be new hope and transformation.

Ariel and I finished reading The Secret Garden together last night.  As two forgotten children learn to care for a forbidden garden, they form a connection, with one another and nature, that nurtures their souls.  The act of being in nature heals their broken spirits and slowly their surly dispositions turn golden as the sun they play under, and as fair as the flowers they tend to.

There is a line that stuck with me, that reminded me of loss and perspective.

“Two things cannot be in one place. “Where you tend a rose, my lad, A thistle cannot grow.””

Where you tend a rose, a thistle cannot grow.  We must, deliberately then, sprout and give rise to those thoughts which bloom into delicate ornaments.  Those are the flowers we must tend to.  Pull out the weeds, and in times of difficulty, look for the rose buds to appear.  Someone or something may come along and cut the head off those roses – that’s life – and eventually, we know the last petal will fall and we will lay to rest alongside our roses, but while we are here, why not put everything we have into minding and making our gardens bloom?

As I stare out my window right now, I see buds on the trees.  Because I got up so early, I saw the sun rise into the cloudless blue sky I’m now witnessing, and into the promise of a new day.  And I smile, having tended to my roses, and feel grateful.

The Opposite of Loneliness

While tying my shoelaces up for a run, a thought popped into my head, I am not lonely.  I came to a shocking realization: I don’t experience loneliness anymore.  My family is around me 24/7, I don’t have time to feel lonely, even if I was.  It’s not that I’m particularly lonesome in my regular everyday life; my days are full and I keep good company, it was just an interesting observation that at a time when socializing is at a minimum, while there are those I miss, I am not forlorn.  My crew is solid.

To follow up on last week’s post, sorry to disappoint those readers who were actively looking for me to fall in poop (you know who you are and you know what karma is), I thought I would fall up (follow-up) with how the poop joke has played out this week.  Keep things light-hearted.

Elyse was on a virtual chat with her speech-pathologist reading sentences posted on the screen for both parties to see, when I arrived home.  While I was out running an errand, Dan reported Elyse was participating well in her session.  The minute I popped my head into the kitchen to check on things the read-aloud sentence that should have been, “Elyse went for a walk,” became, “Elyse fell in poop.”  The speech pathologist pressed their lips together and I did the same, but then as I’m much less professional, I burst out laughing.  Elyse smiled her cunning, knowing little smile and laughed at her clever joke.  She knows how to work a room, my girl.

That evening we were outside in the backyard playing as a family when Elyse tired of the game and went inside.  The first time she locked the rest of us out, I coaxed her to unlock the sliding door with a promise of fruit snacks.  Don’t judge me, it worked!  The second time, I was smart enough to grab my house keys for the front door.  After a stern talking to, I headed back outside.  We were quickly locked out again, and as we have rigged a makeshift shield to block the bottom of our fencing to protect our pup, the backyard gate can’t open so I had to hop our fence to make it to the front door.  I ended up hopping our fence three times.  Once Elyse helped herself to leftover Easter chocolate.  She held up the bag for me to see behind the locked door.  Another time, Penelope got trapped inside with Elyse.  Neither of them can open the sliding glass door, but Elyse can unlock it.  But that doesn’t help when she locks the screen door as well, because then I can’t access the glass sliding door even after she unlocks it. Oh lalalalala! (this is an expression Elyse’s EA uses in response to her comedics).  The third time Ariel had to use the bathroom, and so I made one last scramble over the fence and gave Elyse an even sterner talking to.

“This is not okay, Elyse.  Locking us out is dangerous.  You need to say sorry!  What do you say to mom?”

Looking somber and down at her toes, properly ashamed, finally having learned her lesson she said,

“Sorry, poopy.”

And I couldn’t not laugh.

And we laughed and we laughed and we hugged and I dragged her outside barefoot into the backyard and made her repeat to her dad what she had just said to me, because it was so well timed and unplanned, and it was just so damn smart.  Elyse has a wicked sense of humour and through her antics and one-liners her intelligence shines through.

Then she pulled another one over on us.  She tried the poop joke again, while chatting on the phone with her Educational Assistant, but nobody was biting.  (Oh lalalalala!)  Apres lunch, she shifted tactics.  We took an hour-long family forest walk, and upon returning Elyse took herself upstairs to her bedroom, tucked herself in, and promptly fell fast asleep.  She slept for three hours.  Being a seven-year old jokester is exhausting work.

I haven’t slid and fell in poop – yet – we’ve established.  In the past, I’ve certainly stepped in doggie doodoo, been rained on by a bird, and experienced the projectile range of a baby’s excretions while diaper changing, but I have yet to fall in poop.  Sorry to disappoint.  I did once, however, offer to close the open shed in our backyard on our way out the door to a family dinner.  The conversation from the front of our van went like this:

Me: “Shed’s open.”

Dan: “Oh.  I’m not closing it, called it.”

Me: “I got it!”  Flying out the car door.

In a mock sprint along the side of our house, I flew from the front driveway, onto the grass toward our back shed.  I was just picking up speed when I hit the grass.  One step, two steps…on the third step, my right foot gave way to the soft mud, which I slid through with all the grace of a baseball player sliding into Homeplate.  How had I not seen this coming?  The mud rode all the way up my leg, imprinted on my backside and onto my back.  I managed to avoid my hair.  Dan half hid his laughter while asking if I was okay.  I couldn’t breathe, I. Could. Not. Breathe.  Oh, lalalalala.  Laughter is the best medicine.

While I generally abstain from watching tv, in favour of reading books in the evening, lately I’ve made an exception to carve out some adult time.  And what have us adults been watching?  Comedians.  All I want to do right now is laugh.

I want to laugh and I want to be inspired.  Not in the cheesy, “you can do this!” kind of way, but in the life offering lessons and grace that awaken my writer senses.  On today’s forest walk, it was Penelope, my youngest, making me think.  She pointed to a puddle, “Are those piddows from the rain?”  But ‘piddows’ sounded more like ‘pillows’ than ‘puddles’ and so I thought about rain pillows, originally rain piddows – whatever you prefer – a wet and restful place to lay one’s head tucked into the earth.

The mispronunciation and misunderstanding of language provided by children is a source of never-ending entertainment.  My niece, around age six, once congratulated me on getting something right. She told me I “mailed it”.  My nephew, at two, called quesadillas “tasty ideas”.  These utterances came out over ten years ago, but we’re still talking about them, asking for ‘tasty ideas’ when what we really want is ‘quesadillas’ and congratulating each other with ‘mailed it’ instead of ‘nailed it’ and there has got to be a reason for that.  These memories make us smile and a smile’s just a guffaw away from something more…something uproarious and not at all unpleasant.  Something essential.

Elyse understands the value of comedy; she knows what is essential.  And she’s not afraid to let a punch line drop.  She says the thing you’re not supposed to say, but that everyone is thinking.  Her EA told me there was a student wearing overalls and some other fancy get up to school one day.  Though she’s supposed to be speaking in French at school, Elyse cut to the chase in her native tongue,

“Why are you dressed like a farmer?”

Everyone had been thinking it, her EA told me.  I think a farmer’s dress is practical and pretty snazzy, myself.

Elyse will be the one to stick her tongue out at strangers (much to our dismay), especially if it gets a laugh from the crew.  This morning it was replacing the lyrics to “move it, move it”, with “poopy, poopy” as she booty shakes her behind.  Ariel often raises her eyebrows and looks to Dan and I in response to Elyse’s pranks.  But it’s hard to make out our expressions – the harsh, chastising features that should be there, doling out parenting advice – with our faces turned away from view, shoulders hunched and bobbing, eyes squinting with tears, mouths stifling until we burst.  Let it all out.

This is the opposite of loneliness.

Not Coronavirus: What? Syndrome

Author’s Note: I wrote this as mounting tensions over Covid-19 were rising.  I don’t want to appear insensitive or unaware of the current pandemic situation, but when life goes on – and regular life will go on – there will be other things to discuss and what follows is part of a dialogue from a conversation I’d like to have.  Grab a chair and lend me your ear.

Why is it that certain service providers and businesses act like people with disabilities don’t exist?

If my daughter with Down syndrome wants to go to camp, and she needs some support to be there, whose responsibility is it to arrange and pay for that support?  Without getting into the legalities, who do you think should have to do this?  What feels right to you?

Written into the Ontario Human Rights Code under The Ontario Human Rights Commission:

“…service providers have a legal duty to accommodate the needs of people with disabilities who are adversely affected by a requirement, rule or standard.  Accommodation is necessary to ensure that people with disabilities have equal opportunities, access and benefits.  Employment, housing, services and facilities should be designed inclusively and must be adapted to accommodate the needs of a person with a disability in a way that promotes integration and full participation.”

I am no legal expert, but when I read that, I think, ya, businesses are supposed to be designed in a way that anticipates the range of human existence.  The needs of people with Down syndrome should not be an afterthought.

I am no legal expert, and that is why I’m talking to a lawyer – who is – and will hopefully be able to give me a definitive answer to my camp question, regarding support, but I know what feels right and what doesn’t.  And being told I would have to pay for a support person to accompany my daughter to camp definitely doesn’t feel right; it feels like a slap to the face.  Like the person making the statement doesn’t know my daughter at all (because they don’t).  Like the person is making assumptions and generalizations without asking any questions (because they are).  Like society doesn’t care about inclusion.  Like inclusion is a myth.  There’s money I can access to pay for this support person, but then there will of course be less money for other more essential services, like speech therapy for example; but this is about more than money.  My question isn’t just about who pays.  The costs are much higher than that.

For a child with disabilities to be able to participate in a camp setting or community program, I view putting all of the onus on parents to provide that support as a lousy thing to do.  If you send your typical kid to rock climbing camp, you aren’t expected to bring your own ropes and harnesses, which is what it takes to be able to participate in rock climbing camp.  If we say we are an inclusive society, or if we truly want to be (which we should) then camps should hire extra staff to help meet the needs of kids with varying abilities.  The best part of this approach is that every camper would benefit, and this my friends, is called ‘Universal Design’.

When I approach a new program for Elyse, I want to know what the business is doing on their end to accommodate my child, but I am also sure to ask what can I do?  I don’t mind meeting halfway; I view any setting between a child and a care provider as a partnership, which means both sides have responsibilities.  My responsibility is to help that setting get to know my child; their responsibility is to do the rest.  Elyse does need some degree of support; but it’s all in the way an organization goes about offering it (or not).

Here’s a great example of a partnership that worked.  Before the start of summer gymnastics camp, we signed Elyse up for a regular gymnastics class session so that she knew the staff, and they knew her.  We then enrolled her in that same gymnastics club’s summer camp during a week that was less busy, because we had that flexibility, and in return, the club matched Elyse with a coach whose style and personality jived.  The club was flexible in making sure Elyse’s needs were met without impacting the group dynamics or causing undue harm or hardship.  She did not need a one-on-one support person, but what she did need was a mature coach and a group effort and consensus to keep an extra eye on her.  The coaches did this because they are doing their very best to uphold the values of inclusion and the principles that when we support our most vulnerable and we are a community that looks after each other, then everyone benefits because everyone belongs.

Likewise, our community swim program has been phenomenal.  Year after year, I contact them in regard to registration and mention that Elyse has Down syndrome.  I then discuss Elyse’s specific needs, because – hello – not all people with Down syndrome are the same!  I explain her needs, am flexibly on timing and then Halton Hills recreational staff make sure Elyse either has one-on-one or that there is a volunteer extra staff available to help her in a group setting should she need it.  This has been at no extra cost to us.  This inclusive set up makes us feel welcome and valued in our community.

But not every community program is so wonderful and not every camp knows Elyse and wants to help us out.  The consensus across Ontario is not always a ‘we’, but often still an ‘us vs. them’ mentality.  Friends of ours have mentioned they were turned away from daycares, for example, because their child has Down syndrome.  Why is this happening?  It shouldn’t be.

I now have the correct label for this phenomenon.  I wrote about discrimination in another recent blog post, but that’s not exactly what this is.  The proper term is ‘ableism’ and ‘ableist attitudes’.

From the Ontario Human Rights Commission (OHRC):

“Ableism may be defined as a belief system, analogous to racism, sexism or ageism, that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, or of less inherent value than others.  Ableism may be conscious or unconscious, and may be embedded in institutions, systems or the broader culture of a society.  It can limit the opportunities of persons with disabilities and reduce their inclusion in the life of their communities.”

This, all of this, yes.  Unfortunately, though steps have been taken to try and help bridge the gap, there exists a chasm between the abled and the disabled; the gaping hole that remains is in our attitudes towards those with disabilities.  Sure, throw some money at us – the families who have children with disabilities – we will take it, but it is outdated attitudes and stereotypes that are weighing on us heavily and truly holding our children back.

Expectations, and the expectations we hold for individuals, matter.  There is a slew of research on the impacts of our expectations in regard to outcome and performance, but what you need to know is this:  when we believe that someone can do better, they do better.  When we set our expectations high, individuals tend to perform better.  When we set people with Down syndrome and their families up for success, by putting supports in place that do not cause undue hardship to families rather than just worrying about businessesthen society wins.

Do I want to see a business collapse under the weight of supporting my child?  No.  But that is so far from the case, regardless.  Do I want to see a service, such as a camp, act surprised when I come knocking at their door with my child with Down syndrome?  1 in 800 Canadians are born with Down syndrome – why should anyone be surprised?

Again, from the OHRC:

“Ableist attitudes are often based on the view that disability is an “anomaly to normalcy,” rather than an inherent and expected variation in the human condition.”

People with Down syndrome have always existed.  In every race, gender, socio-economic status and across time.  For those who haven’t already, it is time for businesses and service providers to wake up and plan for the diversity of the children who will arrive at their doorsteps.  Do not put undue hardship on families.

Maybe this is all too impersonal.  Too preachy and utopian.  I don’t think so.  I know we can do better.

And here’s why we should.

Emily and I are giving a talk in a school.  The kids absolutely love her and want to be around her.  Emily is a former Special Olympian rhythmic gymnast with a sparkle in her bright blue eyes and a wit to match.  After our talk is over, a kindergarten class fills the gym and the teacher pulls out a parachute.  While I’m busy chatting, Emily, without missing a beat, joins in with the Kindergartens, shaking and lifting the parachute much to their delight.

On our drive home, I ask her why she did that – joined in at the parachute.

“Because,” she said, “I like to do that, and it’s been a while.”

How many adults do the things they really want to do when it comes to play?  I aspire to be that person, but I don’t always succeed.

There are so many lessons to learn in the breadth of humanity.  We need to be bringing more people in, hearing what they have to say, rather than keeping people out and turning them away.  I have learned more from the experience of having my daughter Elyse than from any education a higher institution could provide.  Some things – love, for example – cannot be measured or quantified or taught.  Some things are mostly felt and there are certainly those individuals more equipped to teach us.

When it comes to supporting each other, building inclusive communities, and the attitudes that pervade, businesses and service providers shouldn’t be worrying about whether they’ve done enough to meet the status quo or minimum standards (though they should make sure they have done at least that) – but whether they can do more.

The Rise and The Fall

Our lives move in waves.  People come swimming in and out of them.  Projects ebb and flow.  Relationships crest and crash, smooth out and can eventually flatten completely if we let them, while life continues until the next dip, the following rise, the next encounter with the sway of the currents.

My life has taken some pretty interesting rises and falls, let me tell you.

I recently read a beautiful essay about how most stories are like sine waves – whether the telling begins in the dip or the crest, the end on a high or a low, and what happens in between those curves is up to the storyteller – but the basic form of our collective narrative is the rise and the fall.  Again and again.  Throughout history.  We rise and we fall, and we get back up and do it again.

I’m telling you this because I sat on a friend’s couch today.  I sat and I listened as she told me a part of her story.  I sat with a notebook on my lap and as she described a sliver of the events in her life, a pattern began to emerge and a sine wave took shape in my mind, which translated into my pen moving in waves along the page.  A story snake.  I saw clearly the rise and fall, the rise and the fall, her rise and her fall.  Over and over, again.  This woman is resilient beyond belief.  She struck me as heroic and she is brave, but I bet she wouldn’t want me to tell you that.  Because she is also every woman.  She is you and she is me.  Hers is a story I badly want to tell.  And the thing is, the thing is, her story has become part of my story.  Our stories are intertwining as we strive to build a relationship, a partnership, ride the waves together.  Our sine waves overlapping, our story snakes becoming friends, acquainting themselves with one another.  She wants me to be the teller of her story.  What happens next will either be the rise, or the fall.  This is the pattern, on repeat, of our lives.

And I couldn’t help but reflect on my own life, on my own story snake, as I drove away from her house and made my way to the library to get to work.  My life has similarly had its troughs and peaks, its highs and its lows, and I realized that at this moment, right now, TODAY, this is a high point.  And in reflecting, I see there are really only two truths to reaching that high, to loving your life and being happy and fulfilled.  If I had to simplify, yes, I’d say there are only two.  I know you know what they are in your heart but humour me.

  1. Do what you love.  2. Persevere.  That is it.

Life is hard, incredibly hard.  And UNFAIR.  So unfair.  You’ll never get what you deserve.  Unless you work for it.  And I’m not talking about I’m going to work on this thing I want for a day or two.  If you want something, and I mean really want something, you have to be in it for the long haul.  I’m not talking about I’m going to hope this happens.  A friend of mine posted this quotation from Antoine de Saint-Exupery the other day, and oh how it resonated within me,

“A goal without a plan is just a wish.”

I would add, a goal without a plan and the perseverance to see that plan through is just a wish.  Hold onto hope and faith.  They have their place.  But believe, most of all, believe in yourself.  Believe in your goals.  And make a plan.  Then push through it.  Ignore the naysayers, there will be plenty.  Ignore the naysayers in your own head.

I met with a friend the other day who once was a competitive swimmer and knew about my former life as a competitive gymnast.  “You must have body issues from being in gymnastics,” she surmised.  Au contraire.  My coaches never talked negatively about our young bodies, instead they marvelled and praised us for what our amazing bodies could do once we earned it.

I almost quit gymnastics at age nine – the year I became a competitive athlete.  This was a major low point for me.  I had to learn to do a back handspring (popularly referred to as a backflip).  If I didn’t do it, there would be no moving forward.  Go backwards to move forward, I see the irony.  I was terrified.  My mom took me out for lunch one school day after mysterious stomach aches had materialized.  She was rightfully worried about me.  She asked me frankly what I wanted to do about gymnastics, if I would continue.  There was no judgement, only love and support in her voice.  I made the decision then to push on.  This was a conscious decision and it was mine to make.

By the time I was twelve, I could do a roundoff back handspring with a layout full twist in the air.  Floor became my strongest event and I loved it.  That year my floor routine, with all its back (and front) flips, placed second in the province for my age and level.  Was it because I had been given the choice, didn’t give up, and then succeeded that I loved tumbling all-the-more?  Maybe.  Couldn’t hurt.

I didn’t learn to loath my body through gymnastics, I learned to respect it.  My body sent me soaring through the air, flipping around a bar high above the ground, turning backwards on a balance beam and dismounting off the side in a back tuck with a perfectly stuck landing.  My body felt strong and well and could do amazing things and I’ve never forgotten that feeling.  My stint as a competitive gymnast brought me confidence that I have carried with me throughout my entire life.

Gymnastics practices were grueling, and they were long.  I learned how to be tough.  How to survive five-hour training sessions that ended with runs outside on the burning gravel in the summer heat.  How to fall on my head and get back up and try again.  How to turn my body into one huge muscle, then how to make those muscles ache; the balance between strength and graceful beauty.  Gymnastics gave me grit.  I learned how to handle pain and stick it out, when it is worth it.  You don’t put yourself through hell for things that aren’t worth it.  Children, worth it.  Athletic pursuits, worth it.  Family and friends, worth it.  Writing a book, worth it.  Building a career, worth it.  Passion projects, worth it.

Some things that aren’t worth it: toxic friendships, money for the wrong reasons, a bad marriage, situations that invoke guilt, doing things out of shame or a feeling that you ‘have to’, letting others take advantage of you, crutches or quick-fixes, abusive partners…the list goes on.  Not all of these things I’ve experienced first-hand, but certainly I’ve been duped into my fair share of bad ideas.  I’ve lead myself down some not-so-good roads, to some not-so-good places.  But today’s my day.

Life is too short not to ride the high of the waves, and lately, I feel like I’ve been surfing.  Literally, I have been surfing, and that’s part of it, but there’s more.

There was a time I had a handful of blog posts and one measly article to my name.  The piece was the story of my daughter Elyse and my love for her.  The piece was about what people with Down syndrome can do if we believe they are capable.  I’m still telling that same story, my message has not changed, but my platform has grown, and so have I.  Elyse is set to be on the cover of a national magazine, with my article as the feature piece.  I did not see that coming, I did not prepare for that high, but maybe I did.  I have a book ready for publication, another on the way.  I’m set to start my MFA in creative writing this spring.  Everything I have done up to this point has brought me here.  Not one thing goes to waste, even those times I was duped, those perceived failures.  Those not-so-good roads to go down; I learned from them.

Was it my teenage years of being a competitive gymnast that gave me the strength and determination to write and keep on writing the past eight years until I would arrive at a book and a new career? Until my writing would appear in newspapers and magazines and that my message would be heard?  You tell me.

“You’re Type A,” my husband says, meaning it as a compliment, in that I am driven, competitive, ambitious, highly-organized and aware of time management (but as psychology is one of my majors, I need to point out Type As are also widely known as being impatient, aggressive, more stressed and a slew of other not-so-nice words, like psychopaths – all of which I reject completely).   But I’m not so sure that’s it.  I don’t think my life has arrived within me innately.  I’m a person who’s always had to work her ass off to get what she wants, and where she wants to go.  I have trained myself hard to ride those waves, and I have no doubt it was the training that got me to where I am today, and the many, many, many, many, MANY times my face has slammed down hard against the waves as I fell off my board.  But I’m in training for the long haul, and I’m not going to quit.  As far as I have come with my writing and my story, there are so many places left to go, pages to fill.  I want to make waves around the world.

My husband, who pokes fun at my psychology degree – but exclusively reads books about psychology – calls this attitude of mine a “growth mindset.”  His eyes get wet when he says it, like the psychological term holds great reverence, and I suppose it does.  There is something to be said for believing that with determination and hard work you’ll get there, no matter your innate abilities.

Whatever comes next, the rise or the fall, and historically speaking, I may be headed for the fall, I’m going to hold on tight and ride my board while this wave of good feelings and good fortune lasts.

Rise and fall.  Rise and fall.  Our chests heave.  In and out, like breath.  Our very lifeforce.  Breathe.

And when the swell returns; I’ll be ready to catch that next wave.

Misunderstandings, If You Will

Discrimination is shocking.  Like a slap to the face.  And I’ve only experienced it second hand.  Or maybe discrimination is too harsh a word.  Maybe ‘misunderstanding’ is the label I’m searching for in this context, but I don’t think so.

When it comes to my daughter Elyse, I have an overflowing jar of ‘meaning-wells’ on my shelf but somehow the more I receive, the less ‘well-meanings’ I seem to have.  With the sheer volume of superfluous good intentions, the point is lost, losing its effect, because good intentions and ‘meaning-wells’ mean nothing when you’re drowning in them and when what you actually need is someone to listen, take you seriously.  We are at risk of drowning in the well-meanings of others and losing Elyse at sea without careful vigilance.

How hard it is for parents who don’t have a child with Down syndrome to see, for anyone really outside of individuals with Down syndrome themselves and their family members to understand how people with Down syndrome are discriminated against on the basis of their diagnosis.  Let me share a story to illustrate what I mean.

Around the time Elyse turned three, was learning to walk, and we took the girls to Disney Land, Elyse learned the letters of the alphabet. Her speech was delayed, but she made sounds and enthusiastically yammered on, mostly nonsensically.  Yet, she could say her letters.

The year she turned three she attended an exceptional Montessori preschool that fostered life skills as well as academic pursuits.  The school focused specifically on letters and letter sounds.  Simultaneously, at home, from the time Elyse was in the womb, we have read to her.  In the NICU at the hospital, recovering from surgery as a newborn, she was read to.  The nurses too, would lean in for story time.  Sound has a way of curling around our insides like touch, and we aimed to heal our daughter’s wounds with our words.  Books, comprised of letters and their sounds, were Elyse’s salve.

At three, we allowed Elyse to use the sesame street app that teaches letters on an Ipad, which she was intensely interested in.

One day, when grandma and grandad were over, it was grandma who pointed out to me that she thought Elyse was labelling her letters.  I had an art easel out with letters printed on it, probably something I was doing to help Ariel, our eldest, who had yet to master the alphabet, for lack of interest.  “B, D, T” Elyse said clearly, pointing to each letter correctly, one at a time, though she could barely speak.  I was in shock!  Elyse, eighteen months younger, learned to label the letters of the alphabet before Ariel did.  Keep in mind, Ariel, her older sister, is bright and inquisitive and receives excellent grades in school.

Fast forward now to Junior Kindergarten.  Elyse is still three years old because her birthday is later in the year and she isn’t toilet-trained.  I know how she looks to the outside observer with her pull-ups and small stature.  Infantile comes to mind.  But there is so much going on, so much, that is not readily apparent because of her language delays.  Then add in the fact that we send her to French school.  Now she has to learn all of the letters again, in French.  Admittedly, this takes her a while, but by the end of JK, she’s mostly there and into SK, surely, she has solidified this knowledge she first latched onto so young.

Roll into grade one.  Learning her letters shows up on her Individual Education Plan (IEP) as an expectation.  I am adamant this be removed.  Should Elyse choose not to demonstrate this knowledge, it’s because she is bored of it, not because she doesn’t know it.  Her school is phenomenal.  They listen to my concerns and we work together to get the expectations for Elyse’s learning where they need to be.  Expectations are raised higher up, where they need to go.  Once changed, the expectations remain realistic.

Enter grade two, the grade she is currently in.  Letters are no longer on the school agenda, THANK GOD, but sounds are up there, as they should be.  As you might have predicted (or maybe not?), Elyse is obsessed with books.  She looks at books all day long in her spare time and we offer her an abundance in French and English.  She has an intense interest in examining each page, but she isn’t quite able to decipher those words yet.  She will likely learn to read holistically by decoding whole words by their shape, rather than how most kids are taught, which is using a phonetic approach, i.e. by sounding words out.  Of course, there is great value in Elyse learning her sounds and the plan is that she will come to reading by blending the two strategies (holistic and phonetic).  She can read certain repetitive short texts already, small sight words, it’s a matter of building on what she knows and where she is at.  The same as for any child.

If we were really to take genetics into account when it comes to Elyse learning her letters, then we should probably look to her parents.  I am a writer and I am a teacher who taught grade one students a second language and then taught those same students to read in that language.  Now I help adult writers with their words.  I read no less than one hundred books a year, and you can damn well bet that my kids are going to experience literacy to the fullest.  In addition to a litany of scientific papers, my husband has one book to his name, in the form of a PhD thesis.  Our kids have two devoted parents, actively involved in their children’s lives.  And don’t get me started on their incredible grandparents.

Would you doubt our children would learn their letters?

But there are unfair barriers to Elyse’s success.  Every new year is like a new beginning of convincing others of what Elyse can do.  We recently started a special reading program, and the therapist outlined goals.

On the third week of Elyse’s sessions, I arrive to find an alphabet chart out.

“What are you doing with that?” I ask cautiously.

“We’re working on her letters!”  Oh no, you’re not.

I quickly, calmly, explain Elyse is way past that.

The therapist then hands me a paper with four attainable learning goals for Elyse laid out.  These are the goals Elyse will be working on for the duration of the program.  The second goal reads, ‘To recognize ten letters.’

“No, absolutely not, not this one,” I point out immediately.

“You’re a woman who knows what she wants!” the therapist replies.

No, I’m a woman who knows what her daughter needs.

This therapist means well, I know they do, and Elyse loves them and I believe that they care and that they are good at their job.  I am so grateful for the work they do because our family benefits from the support.  But THANK goodness they were consulting me, and open to my suggestions/demands.  Elyse will not be subjected to ‘learning’ her letters again.

The feeling I’m left with from the experience (and this is not the first nor will it be the last time) is that learning outcomes, in many contexts, are too often being made based on assumptions, prejudices, discrimination – misunderstandings, if you will.  She has Down syndrome; she is Down syndrome, therefore she will only be able to do X, Y, and Z.  No, no, NO!!!  These folks mean well, but NO!  I share this story not to shame; the problem is a societal issue.

It’s time to raise the bar.  To assume competence, capability and intelligence.  Elyse’s preschool teacher, a woman I know who really saw her, used to say to me all the time, “She’s a smart cookie!”  And you know, she’s my kid, but I don’t care, I’ll say it anyway, she IS a smart cookie, and she deserves to be treated as such.  She deserves the same respect other students do, the same chances at inquiry, the same push to succeed and grow, all of the best efforts to get her to learn.  She does not deserve to relearn the alphabet.  Every. Single. Year.

In Elyse’s place, wouldn’t you be bored?  And how forgiving of misunderstandings would you be if it was your child?

 

 

Ode to Oreo: Loss, Grief and Down Syndrome

Preface: I wrote this piece for a new blogger friend across the country, Katie Jameson, who will be sharing it as a guest post on her site.  Katie is a photographer who writes beautifully about grief in the context of having lost a child, and I highly recommend you check out her site and work here.

I woke up one day, and for some reason decided that was the day I’d get a dog.  I didn’t grow up with any canine companions, after all, I was allergic, but I’d always wanted a dog.  I was twenty-ish years old with a nineteen-year-old boyfriend and maybe a bit compulsive.  We were second year university students with no business getting a dog together, a commitment that lasts over a dozen years.  We lasted two more months – the boyfriend and I, that is – while my relationship with Oreo lasted a lifetime.

Oreo, a fourteen-pound black and white Shih tzu, was my first baby and taste at real responsibility, though I owe my parents – Oreo’s grandparents – for plenty of babysitting.  Oreo and I saw each other through life’s ups and downs.  If she ran away, I would go find her; if I wanted to run away, she was a good reason to keep me home.  She was more than a furry friend.  Dogs have this way of looking into your soul and seeing who you really are.  Oreo saw me.

She was there when I found out my baby was going to be born with Down syndrome.  We had been through one pregnancy before, as I had one beautiful baby girl already.  I was twenty-eight years old and Down syndrome was an unexpected deviation from my first experience with pregnancy.  My baby’s prenatal diagnosis brought a heavy grief down on my shoulders, the weight of which was all I did not know.  Usually, if I cried, Oreo would ditch the spot next to me if we were sitting on the couch together in favour of a quiet corner of a bed.  Alternatively, she would curl in beside her best friend, Sumo, on a dog bed tucked to the side of our living room.  Sumo was a large black lab that came with my husband, they were a package deal.  Luckily, I had grown out of my allergies.  Did I mention my husband and I met walking our dogs?  While Oreo mostly avoided me when I was sad, there were a few times she stayed by my side, and the time period during which I found out my baby had Down syndrome was one of those times.  I remember Oreo standing her ground and looking deep into my eyes, slightly cocking her head.  Why are you crying?  She let me pet her, self-soothe.  Oreo saw who I was before our daughter Elyse came into my life, and she saw the person I grew into afterwards.  Oreo oversaw my education of what it means to be human and to embrace the human spirit in all its uniqueness.  She watched me grow as a person and become the mother of three lively girls, an advocate and a writer.  On her walks, Oreo held her head high, proud of our little family.

Universally loved and adored by children, Oreo was understanding of the abuses she received from our girls as babies and toddlers.  She never bit them when they grabbed and pulled on her tail or stepped on her or fell on top of her though she sometimes warned them with a sharp turn of her head, like a glaring mother, and would nip at them when they were old enough to know better.  Oreo loved to steal the kids’ food – that, I will never deny.  As my girls grew, they were eager to make Oreo perform tricks for treats.  I shared a similar enthusiasm to work with dogs as a child, and my affinity for animals has never waned.  Elyse, especially, who can show indifference toward many activities, giving way to her two boisterous sisters who are known to take over, never let a dog training session go by without being the trainer.  Even though Elyse was afraid that Oreo would put her paws up onto her chest (and Oreo would, to grab the treat, given the chance) six-year old Elyse never backed down from being included in Oreo’s care. Elyse clutched Oreo’s treat to her chest like she was feeding a lion then threw it wildly to the ground for Oreo to give chase.  This routine never failed to bring a smile to Elyse’s face and mine.  Oreo brought many children great happiness.  She brought me great happiness.

For years, Oreo was a regular staple on our walks to school.  She was somewhat of a celebrity with the neighbourhood kids.  My girls sometimes fought over who would get to hold her leash.  That was a responsibility Elyse seldom relinquished.  She loved walking Oreo and getting to hold that leash was a small taste of power and freedom so seldomly afforded to her.  The only catch about Elyse walking Oreo was that I’d have to keep an extra eye on them both.  While trained on her leash, Oreo would occasionally pull, but more so, when Elyse grew tired of the task, she would simply drop the leash with a casual all done.

For a while, my husband and I got into the bad habit of using our feet as barriers to shoo Oreo away from the kids’ food as our hands were often multi-tasking.  We stopped doing that when Elyse also adopted the habit but actually tried to kick Oreo.  Despite this aggression, and Oreo being a bit hyper and overbearing, and Elyse being a tiny bit frightened of her, Oreo and Elyse were buddies.  You could say they were tight.

 

How do you explain the death of a beloved pet to a child?  Worst still, how do you explain that you are going to be putting an animal to sleep?  Forever.  Time and tenses have never been Elyse’s strength, who I find at seven years old today is very much in the moment.  Elyse shines her light in other ways.

 

I woke up one day, and knew it was time to put Oreo to sleep.

At fourteen years old, Oreo’s health had been rapidly declining.  We left on a six-week family vacation around the world, where she stayed with my parents (thank you, yet again), and when we got back, though Oreo had been well cared for and received much love, there wasn’t much left of her, the dog she had once been.  While she bounced back upon being home in the week or two following our return, she couldn’t find her rhythm or ward off the effects of old age, including incontinency.  She was frequently confused and shivering.  The worst was the sound she made at bedtime as she paced, looking lost, from room to room.  She whimpered and moaned and there was no consoling her.  Oreo’s cries were heart-wrenching.  Of course, we took her to the vet, but there isn’t much they can do for an aging animal, except bring them pain relief through drugs.  We did that, but still, Oreo was in pain.

I woke up and took Oreo for a decent walk on the last full day of her life.  And after that walk, I knew.  When I stopped moving, Oreo paced around me in circles.  All she had done day after day was pace herself until complete and utter exhaustion.  She would collapse into an uneasy sleep for a few hours then begin her pacing again.  She was in pain and I knew it was time to let her go.  She’d had a full life.

I tried my best to prepare the children for what we would do the next day.  I tried to tell Elyse that her buddy would be gone, while also trying to console myself, but Elyse just sat on her bed with her book gripped tightly in both hands, eyes fixed to the page.

I didn’t want to put any pressure on the girls to feel or act a certain way toward death.  I wanted them to come to terms with their own emotions of the experience.  My husband and I decided the girls would come to the veterinary office and have the chance to say goodbye, but then I would stay in the room alone with Oreo while she received the injection to put her to sleep.

The morning of our final goodbye, tears glistened down my cheeks.  My toddler pointed out that mommy was sad, while my eight-year-old noted “that’s because Oreo is going to die today,” but Elyse for her part showed no awareness of what was to come.  She stayed upstairs in her room, reading her books.  That is until we arrived inside the veterinary office.

With the fragile and fraying Oreo in my arms, our family was ushered to a comfortable back room.  While the girls were somewhat hyper in the car ride over, they sensed the magnitude and solemnity of the moment at hand now.

My husband gently reiterated to the girls, now in context, “it’s time to say goodbye to Oreo girls.”  They each took a turn caressing Oreo and stroking her softly, but it was Elyse’s reaction that will forever stand out in my mind because I thought she didn’t understand.

“We’re saying goodbye to Oreo,” Elyse repeated in a whisper.  Then she pat Oreo ever so gently and leaned in for one last hug and kiss.  “Goodbye, Oreo.”  She had compassion and love in her voice.  Elyse had been listening the whole time.  She understood and she directed the full force of her love unto her dog.

In the immediate aftermath of the experience, my youngest had a hard time processing our family’s loss, choosing to view Oreo’s absence as temporary, perhaps – “Oreo is at the vet’s”, while my oldest contemplated the reality, “We put Oreo to sleep and that means she’s dead.”  Elyse seemed to grieve the loss of our pet the most readily.

Two weeks after we put Oreo to sleep, Elyse said, “Oreo is sad.  We had to put Oreo to sleep and say byebye.”  That Oreo was sad clearly made Elyse sad and she remembered that pain.  Grief is never a straight line, is it?  Even when it comes to our pets.  I gave her a hug, and we reminisced about the good ol’ days with Oreo.

One day, I will wake up again, and it will be time for our family to bring home a new dog.  This dog will exasperate us, undoubtedly, as well as bring us great joy and happiness, as Oreo so often did.  I won’t be surprised, if when we do decide to get a dog, Elyse is the one to bring Oreo up.  I know with certainty that Oreo is a dog none of us will soon forget.

R.I.P. Oreo

 

Summer 2005 – Sunday, December 29th, 2019