Mom Guilt

When I look outside my window, the rain is falling sideways, leaving wet streaks, not unlike tears, against the glass pane. Pane or pain? I had a rough morning with my daughter. She got up at 6:30 a.m., brushed her hair for an hour, yelled down at me from upstairs, demanding that I put her hair in a ponytail, while I’m frantically putting together three lunches and breakfasts (plus my own, but mothers don’t really count, do we?) I run up quickly and gently pull her hair back, “there you go. Now, please get dressed.” Another hour goes by, most of that time she spends eating, which is great. I need her to eat. I take out the garbage, recycling, and green bin in the rain, continue to serve breakfasts, put away dishes. Clean new dirty dishes. Now I’m chopping up veggies and serving bunny mac and cheese into three thermoses and by golly, she’s still not dressed. I’m feeling less kind, less gentle, the frustration that has been building up over the past few days of solo parenting is about to boil over.

To aggravate the situation, I have a nagging cold that seems to have gotten worse, with each passing day, instead of better as I hoped. Bring on the Hydra sense and Kleenex box. Saying you have a cold during Covid times is like saying you have the bubonic plague. I’m fairly certain it’s a cold, but still. Nobody wants to be sick right now. I’m trying to avoid breathing on my children, desperate for them to stay healthy.

As the minutes tick by, 8:30, 8:37 – Ariel’s friend arrives on her bike – 8:42, oh now it’s 8:50 a.m. and we really truly have to go. Everyone has eaten breakfast, three lunches are packed in backpacks, agendas are signed, masks have been changed, water bottles washed and filled, hats, mitts, raincoats and rainboots sorted. Children have used the bathroom; some even brushed their teeth. And we could leave and be on time except that one child is buck naked.

That sounds funny, but I am not laughing. Not laughing at all. These moments aren’t about the specific incidences themselves, but about the dozen or so other moments of annoyance in the past few days that have boiled me down to this point. No water left in the pot.

Two hours after I first handed her – handed her – the outfit (why isn’t she getting it herself?) my daughter looks at me at 8:55 a.m. – we’re now to the point of being late – and she says, “No! I don’t want these pants.” She sits on the ground, wearing only her underwear.

ARGHHHHHHHH

I scream. I rant. I act like a terrible mom. I fail.

The truth is that I can’t handle being ignored. And I refuse to relinquish control. These are not flattering qualities, in case you were wondering. The truth is that time presses into my side, making me uncomfortable.

I listened to an interview with experienced broadcaster and author Howard Green and his advice when interviewing was clear: “There is a great, basic, human need to feel understood.” Listen, listen, listen, and listen well, he stated.

When I feel my child understands, that they are listening but that they choose not to hear me, I find that infuriating. The problem is, and it’s always obvious to me afterwards, it is I who is clearly not listening. I who has misunderstood. When I get angry and scream at a child to get ready, what I’m really asserting is my intense need to be in control. To be the A+ parent. I know this about myself. I am competitive, I want my kids to do things “right”, be their best selves, but in addition there’s an immense pressure on parents to be the best parents too: get kids to school on time, make healthy litterless lunches, take an interest in their day, check their agendas, do homework, and follow-up with the school as necessary. Prepare healthy meals, spend time with your kids, sign them up for extra-curriculars, make sure they have everything they need (hats, coats and mitts – winter is coming!), Halloween costumes. Pressure, pressure, pressure. Get it right, moms. You have a full-time job? Good – then maybe you’ll be able to afford family travel, the ultimate status symbol, and that overpriced house you live in or lifestyle you want to afford. Do you have interests? Good – those you can pursue when the kids are sleeping and you’re exhausted. Don’t forget to plan time for exercise, self-care, and a wedge of time for yourself! Gosh, not sure when you’re going to fit that in…guess you won’t. Balancing these ideals is impossible. Yet, I buy whole-heartedly into the rederick of having it all.

 

The problem is at times I schedule my day so tightly so that I can be the A+ parent, self, student, wife, colleague, etc. that there is little margin for error. For humanness. For the needs of needy children. Children always need something. At bare minimum, love. Let that be the rule and not the exception to the rule. I should have learned better by now.

The truth is also that I’m a bit of a perfectionist.

I scan my email first thing in the morning. I know, I know, nasty habit, but the other day, there was an assignment from my Master’s program sitting there. The email came in at 6:20 a.m. my time (my instructor makes full use of his days, too).

I open it and scan for my mark. I cannot tell you how much I enjoy receiving a grade because it’s shameful. I like it way more than I should. And this has led me to the conclusion that I’m a total pleaser.

Another truth. After the first assignment we got back, it wasn’t enough for me to know I got an ‘A’, I had to know what grades my peers received. How did I compare. One friend got the same as me, and another scored well, but slightly lower. I felt sick at myself for asking; I regretted the words the moment they came out of my mouth. My intention was not to make someone else feel bad, but to make myself feel good. I am a hedonist. Pour pleasure over my body, please, send good grades my way, fill my pot until it overflows and I’m good and wet. Now boil me back down with the work that it takes to get me to that point. I’ll take sick pleasure in the repetition of striving for success.

And that’s what it is, isn’t it – “success”? To reach success takes grit, determination. Pain. Refusing to quit. The willingness to boil oneself down again and again until there’s nothing left or the pot is full to overflowing.

When I do quit, and by quit, I mean cease to be the “good” mom, the “nice” mom, the mom who doesn’t yell at her kids, then as hard as I am on my kids, I am that much harder on myself. Don’t ever feel the need to shame a mom; no one can shame her better than she can.

I drop my kids off, then sit inside my house on the steps, feeling like a failure when the doorbell rings. Knowing I am sick, a friend decides to stop by with a treat. She sends me a text to let me know the treat is on my windowsill. She has left my favourite drink and a dessert. What act of grace is this? I feel completely undeserving. Isn’t that what mothers do best? But I allow myself the first sip, anyway, pour pleasure into my body. Nothing bad happens, the kids are at school, this time is my own. I sit in silence. I slow down. I acknowledge gratitude for my friend, I acknowledge I will try and do better next time with my daughter and I forgive myself. I sit down at the keyboard, latte by my side, and begin to type.

I acknowledge parenting isn’t easy, and I’m not perfect, and truly, I don’t want to be.

The Chimera

I’m back at the cottage. The chickadees are here – we call back and forth to one another – so is the rain. But I don’t mind the rain; I’m here to work. The brightly coloured ground is wallpapered with leaves. Inside, the whirl of a heater, a light sucking sound – or is it blowing? Last night, standing outside in the dark, complete silence. This is my definition of a retreat.

I do have a friend, a fury companion. I take him outside for his walk this morning and he refuses to budge from the doorframe. It’s raining, he communicates with his eyes. My pretty, prissy dog. Instead he suggests we play inside, nudging his rope toy into my leg, coyly letting his teeth graze my skin from time to time, just enough to goad me on. I am reminded of the fox from The Little Prince.

“You are pretty,” the prince tells the fox, “who are you?” The fox explains he is a fox and that if the little prince wishes to play with him, the little prince must first tame the fox. Louie is mine, I have tamed him. And now he is unique to me in all the world. But the fox’s words are almost a warning: once you tame me, I will be sad when you leave. The fields of wheat will remind me of your blond hair. We are responsible for that which we tame, and so it is between my vizsla and me. I am here to write, to work, to run a retreat, but I am also responsible for the things I have tamed. We can never completely leave the world behind, can we?

Later, we walk along the driveway and something inside Louie lets go, unclenches. He tears around, digging in the earth, then runs up a storm. Whatever it is that is wild inside of him has broken free. This is who he is, I think, this is instinct. I take him outside to be free, to be who he is. A wild animal. He runs at me full speed, his muscles uncoil as he jumps up at my chest, mouth open, gnawing at my arm.

“NO!” I am firm with him, grab his collar. It’s as though he’s forgotten himself, the dog we’ve tamed him to be. Oh, right. He sits politely, looks at me with those puppy eyes. “Okay,” I tell him, “go play.” Released, he’s off like a shot. Then a minute later attacks me again, playful but rough. Both my pet and a wild animal.

On another day, Louie and I are running together, and something miraculous happens. The moment is like a chimera, an illusion or fabrication of the mind, an unrealized dream, except it comes true.

Louie runs alongside me wearing a black fifteen-foot leash. If I see another dog or human coming, I can easily step on his long rope, or catch up to him and reign him in. I’m teaching him to come back to me when we see other people, but he isn’t perfect at it yet. Remember: taming, wild animal. He’s in training. The leash trails behind him, and bumps and shimmies across the ground like a snake. Louie and I are often close enough during our runs that I have to avoid stepping on his leash, which otherwise causes him to roll and tumble to the ground (sorry, boy). The leash’s movement makes it seem as though it is alive: it’s a trick of the mind and the eyes, and I constantly remind myself it is not so, the leash is an inanimate object being trailed along the ground. One minute I’m running along, the next minute the leash turns into a long black snake, slithering along in the shape of an ‘s’. The chimera becomes real.

I am running along and the end of the leash does turn into a real snake. I have to hop over the reptile to avoid stepping on its long body. The snake was likely sunning itself on the dirt path, when down comes my wild animal, clopping along, barreling full speed along the trail, disturbing the snake from its rest. The snake scurried off in my direction, appearing to materialize out of the end of the black leash the same colour as its body.

“Oh!” was all I could manage as I hopped over the snake the length of my arm.

This has to mean something, I tell myself, jogging along. Leashes don’t just change into snakes for no reason. Maybe it’s what is real isn’t as it seems? Maybe it’s about creating something out of nothing? Maybe it’s about life materializing? Maybe it’s about being at the right place at the right time to witness a miracle, or the wrong place at the wrong time, depending on how you look at it? Maybe the snake carries no meaning at all, the three of us just passersby in the grand scheme of the universe? But I think I know better than that. Maybe it’s about watching where I step, about learning to see what’s in front of me? Literally, what I am almost stepping on. Maybe the snake was a warning, a sign to turn and run, or a gift of the inanimate being made real? Of my worst fear, that of the leash or rope, actually being a real snake? Isn’t that one of those things many of us fear when we’re outdoors. That that stick over there is a snake that might curl around our arm and bite us? It’s funny how the snakes we encounter in Canada really have no interest in doing that, but my dog, the one I’ve tamed, he’s game.

The gift of meaning was in seeing the leash come to life, in beholding the real live snake, and then jumping over it. I did not scream; I did not feel in the least bit inclined to. I’m no longer afraid of snakes, because I’ve taken the time to get to know them a bit better. When we know something, we fear it less. And of course, as I jogged along further, I came to see the snake as representative of my little girl with Down syndrome. The end of the leash could never become real, just like how as a twenty-eight year old woman, I could never give birth to a baby with Down syndrome. That would be my worst fear. Then she was here, and I held her in my arms and saw that fear was only a fear of the unknown. That everything is knowable, and that it is fear that drives us apart. And that my little girl would become unique to me in all the world. She would tame me. It’s not that I wasn’t surprised, that I didn’t jump or that I would act perfectly, as her mother, all the time, but what once seemed scary, no longer held its power over me. I would see the world anew, and I would jog along just fine.

The Real Thing

September’s pace hits you in the belly, takes the breath right out of you. Perhaps the greatest indicator are the sounds coming in through my bedroom window from outside at six in the morning. The squealing breaks of large trucks, engines turning over, wheels pressed against pavement. These are not weekend sounds, rumpled sheets, the hot sizzle of oil in the frying pan or the smell of bacon and maple syrup. Another car drives by this morning. Even the sky is screaming with jet engines. Busy, busy, busy. All going somewhere.

Sometimes I want to turn it all off, make the noise go away. I check my phone and my day begins listening to a video of a friend crying. On a phone call with a friend last night, discussing writing, she reminds me that our brains don’t know the difference between real trauma and trauma we relive through our writing, in terms of the toll trauma takes on our bodies, our wellbeing. We feel trauma at a visceral level when we remember it and we actually reexperience it. Does my brain understand the difference between my friend recording a video of herself crying last night and that my friend is likely sleeping soundly when I watch the video today? Probably not. I feel sad when I watch the video because I see her pain, no longer real, but that once was so and were she to be reminded about it, she might be sad all over again too. But maybe not. Perhaps that was a particularly sensitive moment and she’s moved on. Without being there in person myself, I’ll never know the full context.

Online, even when we aren’t there, we are there. Through video and Zoom, we are everywhere now. I’m not sure if my brain knows the difference: that I am not actually going everywhere, it just feels that way. My body, my mind, have travelled into the city, across the country from one side to the other all in one day, and it’s tiring. We feel exhausted, fatigued. Burnt out.

I do have a remedy for this. My dog is my lifeline. I HAVE to walk him/run him/play with him. He gets me outside. Outside this time of year is the sound of crickets chirping, the hot sun beating on my bare arms, fading colour and fresh air with a whiff of decay. In town, it’s the cries of children in the school yard and the barks of dogs greeting passersby. Out of town, it’s trees and dappled light, stretching shadows, dusty footsteps along a well-trodden path.

My dog, my children, they are in the present moment. They are my real life. There is no such thing as past traumas, only the right-here-right-now of the moment. I am filling in a form for the school before I go back to the email I was in the middle of typing before I had to pick the kids up, before I phone that person back, before I join my next Zoom call, before, before…

“Mommy,” says Penelope, my youngest, “come play hockey with me in the backyard.”

“Okay.” I drop the pen and the form. This time they can wait, my four-year-old can’t. Or rather, she can, but real-life beckons.

While Zoom may take me to far-off places, my children keep me right where I am, right where I am meant to be.

Outside we go and the sun is blazing, the grass needs to be cut. Penelope hacks away at a tennis ball with her plastic stick. I teach her to always keep two hands on your stick, see, like this? the way my dad taught me. She hacks at the ground. Lower, quick, like this – see? She pauses to look at me, her eyes hold me and she smiles, delighted to have her mom all to herself. In the flesh. This connection between us cannot be replicated on any screen, or rather, it can, a scene in a movie perhaps, the mother dropping what she’s doing to make time for her youngest, a heartening scene that evokes emotion. The listener feels something, real emotion, love even, that approximates the real thing. But do not be fooled. My phone doesn’t love me. My computer screen does not love me. Exchanged in that glance was authentic real-life, an in-person exchange that cannot be replicated again. The exchanges of real-life are the fabric of the universe, not what happens on a screen. I’m trying to remember that. To tell my body to slow down, step away, get outside and into the folds of the universe. We pass the tennis ball back and forth between us; she hits it really far and we cheer. Our happy cries ring out and there is no replacing this real thing.

 

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.

 

Living On A Cloud

I spent the summer after third year university inhabiting une petite village in Quebec as part of a cultural exchange program through Western University. I was joined by students from around the world, but mostly other Canadians like me. The summer was rife with love affairs and love triangles, some that lasted months, others that lasted five weeks (the duration of the program). I meant to leave after five weeks but was having so much fun immersing myself in Quebecois culture, I planned to stay the entire summer break. I spoke in French every waking minute and when my parents came to visit late in the summer, English felt heavy on my tongue, stuck in the back of my throat.

At one point, while visiting a campground where my host family had a trailer, I was riding on the back of a golf cart with a friend. My friend turned to me,

“You know this isn’t real life here, right? We’re living on a cloud.” We laughed; he was right. Our love affairs here didn’t really matter, because this wasn’t real life, right? Real life was where we towed the line, where our decisions impacted our actual reality. Quebec life was…elsewhere.

This summer, once again, I am undoubtedly living on a cloud. Life at the cottage hasn’t been perfect or without its dramas, but it’s been safe, sheltered, illuminating, often peaceful, infused with beauty, nature and life. The proximity to the lake, mere meters, is my greatest joy. I swim every day. Living here has felt more real than my real life.

The realities of school and Covid and returning home to rebuild our past life feel heavy, stuck in the back of my throat. I feel like I’m heading toward a different kind of life on a cloud, a storm cloud, not the kind of cloud you want to be on at all. No love affairs, only the heavy fog of disease that surrounds us. The reality of children being sent back to school, only to be exposed to illness; the slight sign of their humanity, a dripping nose, sending them straight home again anyway. Is there even going to be school for families who have young children, especially families, like mine, with a child who is more susceptible to getting sick? I can’t help but feel the words, “only the strong will survive” like a punch in my gut.

On the storm cloud, it rains every day. It rains down responsibilities, broken promises, false hopes and dashed dreams. While the school system in place isn’t perfect, I feel like I have to try, working parents, parents who are full time students, we feel like we have to try to send our kids back. What’s the alternative? Who’s going to look after them at home? Apple tv? Their iPads? Yup and yup. Technology is both a blessing and a curse. And we’re lucky, LUCKY, to have access to that technology that is both a blessing and a curse. What about those kids who don’t have access? Who aren’t so lucky?

Normally the start of a new school year is like the sight of a rising sun ahead, all blustery blue skies and white fluffy clouds. The sun-man is wearing cool black shades and a big smile with happy sunrays shooting out of his head, a backpack on his smoldering shoulders. I feel like Covid killed the sun-man. I picture my children, their cute faces hidden behind masks, sequestered at their desks all day long, afraid to touch one another, just hoping to be able to attend school because their parents are so tired of looking after them, of trying to be everything to everyone that they can’t keep it together anymore. School is what they desire; that’s what we’ve come to.

Nobody chose this, I know. I also know I will be one among many mothers who are pulling out their magic markers and drawing a squiggly sun-man in their kids’ skies, trying to keep things together, to keep those clouds above looking glossy and bright. I will simultaneously draw a happy face across the squiggly line of my own mouth, because that’s what mothers are expected to do.

But I won’t be happy, and my kids will know that.

I will not be happy to give up my time to write. I will not be happy to put my future on hold. I will not be happy to do half a job. I will not be happy with having people in my workspace. I will not be happy with a disgruntled, stressed out partner. I will not be happy to see my kids at home when they should be at school. I will not be happy if someone in my family gets sick. I will not be happy when there is an outbreak in my community.

My unhappiness is but a drop in the bucket, but I wanted you to know. To the mothers and parents feeling stressed, you’re not alone.

The Curious Incident of the Frog in the Night

I’m a sentimentalist, it’s true.  I am guilty of romanticizing life at the cottage, both to myself and to others. I tend to focus on the good feelings and not so much on the bad experiences. And there’s merit to this, to being an optimist, to seeing the glass half-full, to finding the positives and looking on the bright side. To letting one’s self get swept up in the moment. But we all know that darkness lurks somewhere in the shadows.  I can’t remain clouded to what is difficult and unseemly to write about or I risk only telling half the story – that which is saccharine, sickly sweet. (See Leslie Jamison’s essay, In Defense of Saccharin(e) from The Empathy Exams for a further examination of this topic).

There’s the fairy tale version of our summer stay and the darker elements – the truth of our existence here lies somewhere in between.

Let me tell you a sinister story, reminiscent of brothers Grimm.

Once upon a time there was a princess named Penelope who loved to pick up frogs and toads. All day long, she caught the frogs, watched the toads and cradled them in her hands. At four years old, the little princess was not the best at washing her hands.

Her parents, the king and queen, were very busy running the cottage kingdom, managing three children during a pandemic and working full time. Life in the palace was not always a bed of roses. They argued over responsibilities and often left the children to their own devices. Princess Penelope spent her days down by the shoreline with her frogs.

Now, if this were brothers Grimm, the little princess would likely drown at this point in the story, but stay with me here.

One night, after the royal family hosted visitors for the weekend, the little princess began to vomit. The queen panicked. Was this the dreaded Covid plague?  Her poor baby! What had they done! How could they have been so foolish as to allow others to enter the protective bubble of their cottage kingdom?

Mysteriously, the next morning, after having vomited all night, the little princess recovered. She seemed absolutely fine – better than fine. Life returned to normal with princess Penelope catching her frogs down by the shore. The king and queen stopped worrying about the little princess and fell back into their work.

A week later, the vomiting happened again. This time, there had been no visitors. Was this some sort of evil spell?  No – poison.

The king happened to remember something he once read in a book of potions about toads excreting toxins.

Little princesses aren’t very good at washing their hands. 

Busy monarchs seldom have the time to enforce proper hand washing after every single held toad.

When a toad is squeezed, they excrete a milky poison from their eyes toxic to their enemies. In addition, many water frogs also have bacteria and can carry salmonella, which can lead to some serious intestinal upset. Through further research, the king and queen also discovered that the substance coating certain frogs and toads can be hallucinogenic.  So the story of the princess kissing the frog who turned into a prince – who knows?  Maybe that’s what she thought she saw, high as a kite.

Furthermore, because a frog’s skin is so porous and takes in its environment so readily, holding it in your hand is akin to having someone hold onto your lung. That cannot feel comfortable, and so, perhaps it is best to leave the frogs and toads be.

Now that the case of the curious night vomiting has been solved, his and her majesty have gently, but firmly, instructed the young princess to limit the number of frogs and toads she holds and to wash her hands after handling every single one. Every single time.

According to latest reports, “I’m holding a toad in my hands!”, not much has changed.

And so this story – and her nausea – may continue unhappily ever after.

But, honestly – what can you do?  She’s a kid. Kids are disgusting. And to those who would judge: if you think your kid hand-washes after doing something as dirty as wiping their own ass, check next time, use a magic mirror or whatever you have to do. And when you watch them walk out, hands dry, wipe their nose and pass you by with a grin, maybe then the frog vomiting won’t seem so bad.

Accompanying every bit of life, every piece of beauty, there’s a darker side.

“Oh, I just love the loons!” I told one neighbour,

“Yes, well, they’re not as great as you might think.”  The loons eat the native ducks’ eggs, effectively almost abolishing them from our lake. And the ducks that do survive, another neighbour informed me,

“The ducklings – the snapping turtles pull them under by the legs, one by one.”  One webbed foot at a time.

Nature is murderous, cruel, relentless, toxic. Leeches that suck your blood, wasps that sting beneath the eye. Toads that poison little princesses like a blood-red apple.

At the end of the summer, I’ll hold a picture in my mind of our sweet four-year in a pink tutu bent over the toad in her hand. All eyelashes and a mop of curls. The remnants of salmonella on her small hands.

I’ll try not to get all sentimental over that picture, over the notion of a tiny girl cuddling with her toads, enjoying her warm summer days, the sparkle of the sun reflected in the water, dazzling, under a bright blue sky, the apple of the frog’s eye.  That kind of romanticizing, especially in writing, is enough to make you sick.

 

Hold on Tight to this Earth

The hiss of the tea kettle steaming its siren call rattles me awake.  There’s a small lever on its spout to flick back the lid and once, only once, instead of touching that nubby rubber extremity, I put my finger on the steaming metal.  Only once.  Accidents happen.

Is it a curse/burden or the wild imagination of women, of mothers, to constantly worry/fear/have daymares about the horrible way their loved ones may die or be injured?  Do men have these same fears?

Safety is the illusion, the comfortable narrative we tell ourselves as we hum our way through our days – a hum that can easily turn into a scream.

My brother and his family visit on the weekend.  We go on a day trip to Algonquin park.  Our cottage is situated about forty-five minutes from the east gate.  On our way, as we careen down another steep incline, the speedometer reaching over 100 km/h, I see the sign warning for deer, then I see the sign warning for moose and I can’t help myself, “please slow down.”  I can see the moose appearing from nowhere, hear the crash; I think I’m going to be sick.

On our hike, we spot a stack of boulders with snakes happily coiled up in the sun.  My toddler leans her face in close.  What if a snake were to simply recoil and SNAP.  She isn’t afraid.  She pokes him with a stick, and he slides away.

On the last evening of their stay, my brother and my husband set off to fish in a leaky tin boat at sunset.  Our lake is quite small, but it has pockets of depth, some say up to ninety feet.  Mostly the whole lake is visible, except for a few hidden bends.  As the sun dips further, I walk away from them, turn my back on the water, and walk up the steep incline of our gravel driveway with my dog.  I think, I hope they brought the lifejackets.  We are new to cottage life.  It’s easy to forget your own safety underneath the camouflage of bliss.

I walk back down the driveway with the dog and scan the horizon.  No sign of them.

They had a few beers, I remind myself.  What if they tipped?  The water is calm and secretive.  The lone eerie call of a loon rings out.

Back in my kitchen, as the tea kettle wails, I return a large knife by sliding it into its holster.  What if I missed?  And instead sliced into my hand.  Instead, I am careful, deliberate.  The throaty call of a crow caws out somewhere overhead.

They are around the bend, my brother and my husband, and as the sky fades to black, the stars twinkling overhead, they come back safely to us with fish stories to tell.  The baby fish that ate their worm and caught the monster pike, will someday turn into the monster fish that caught the whale, but there’s no danger in that.

“You don’t have any snapping turtles up here by any chance, do you?”  My sister-in-law tells me a story about the snapping turtle that bit her toe as she dangled on a pool noodle in a lake.  Her turquoise nail polish was to blame, she thinks.  She shows me the scar and I try not to think about it as I swim alone, far from shore, cutting across the lake.  I also try not to think about what if, at this moment, my heart stopped beating.  We do happen to have a lovely snapping turtle, the caretakers of the lake, who likes to visit the fish underneath our dock.

The kids fish and catch fish.  The fish go into a bucket.  The kids and other adults go up for lunch; I am the last one to pull myself from the lake.

“What about these fish?” I call up.

“Leave them, the boys want to eat them.”

I hesitate.  The fish don’t look like they’re doing so well.  One is floating up sideways near the top.  I push aside my instincts.

Over lunch, we ascertain nobody knows how to clean or prepare the fish.  And it seems especially clear that no one is volunteering to kill them or deal with the mess.  Another time.  My brother is the first to head back down to the bucket and the news is grim.

“I think they’re all dead.”  He dumps the bucket of water into the lake in a panic and then realizes he’s just dumped a bucket of dead fish beside the dock.

“No, look!” they’re still breathing, they are just in shock.  Fish swim so that water will pass over their gills.  The bucket provided not enough space, not enough air.  No room to breathe and live.

I am outraged on behalf of the fish.  I can tolerate fishing, but I cannot tolerate cruelty.  That our carelessness has caused the fish distress near death is unacceptable.  Take only what you need.  Still.  One by one they eventually swim away, they live.  Lesson learned.  It’s clear to me who poses the greatest threat and it’s not the snapping turtle.

“How do you keep them safe?” Elyse’s speech therapist is asking me a pointed question, the pointed question, about life at the cottage on the water’s edge.

“Strict rules,” I say.  There’s no going outside without letting an adult know.  No going on the dock period without an adult.  Still.

There’s a sort of marsh on one side of the dock and a beach for swimming on the other side.  The edge of the water is shallow, its deepening slow, only up to four feet by the very end of the dock.  We allow the kids to play at the beach by the marsh.  Still.

One day Dan and I are finishing our dinner.  We sit in the screened in porch with a view of the water and the girls are playing outside.  For one moment, they forget themselves and step onto the edge of the dock.  One peers over the edge into the water, probably looking for minnows, another leans (pushes?) into them and SPLASH!  On one side, our dock is lined with rocks, likely the remnants of an old dock.  Her head avoids the rock by inches.  Dan and I hear the splash, jump to our feet, in time to hear one complaining about being soaking wet, but not hurt.  Not this time.

Louie, our rambunctious pup, weaves through children at warp speed, occasionally deciding to take one out.  We know he does this.  We prepare for this exact scenario.  Keep him on a leash we can grab onto at any time.  Our children, who cling to his neck and pull at his skin and love him dearly, have learned to brace themselves when he gets into this wild state.  Still.

My youngest nephew is but a wisp of a child.  Small for his age of three, which is in itself small; I worried about him the most with Louie.  Sure enough, with our vigilance, which is not vigilance enough, Louie at some point over the weekend, knocked him down two stairs, bulldozed him over in our driveway as we were all saying goodbye, and narrowly missed knocking him off the dock, more than once.  Louie charged full speed right at him on the dock, having escaped an adult grasp, in a frenzy of excitement, and my nephew’s little life flashed before my eyes.  The lake in relief, Louie swerved to the left at the last minute and I scooped my nephew up safely into my arms.

Later, the two of us, just the two of us, took Louie for a walk up the incline.  My nephew didn’t say a word, but held my hand tight, trusting me, as I warded off the dog who wanted sticks thrown for him.  A dog that comes in hot.  I felt like with my hand, I was tethering my nephew’s small soul to the earth.  I daren’t let go.

 

Keeping the Peace

My husband and I have agreed on a common goal for our family during this time of pandemic, which is to keep everyone happy, healthy and above all else:  keep the peace.  Keeping the peace is not as easy as it sounds.  KEEP THE PEACE.  I want to shout it out loud, but that feels counterproductive.  The challenge is to keep the peace when there is just so much each member of our family could be arguing about.  It’s your turn to take the dog out.  Don’t let the dog out!  Don’t run away from him.  Stop biting me!  It’s my turn to work!  Whose socks are these?  Who didn’t flush the toilet and WHY IS THERE A FULL ROLL OF PAPER TOWEL IN THE TOILET?  Who’s fault is that?  Why does it matter?  Who’s in charge here?  Why are the kids on their ipads?  Why aren’t the kids on their ipads?  Get them outside – bring them in!  What’s for lunch?  What’s for dinner?  I don’t want this!  I don’t want that!  It’s my turn.  It’s NOT my turn.  I wanted THAT.  Here, take it – no!  Who’s doing the dishes? Who’s watching the kids?  Who’s watching the dog?  What’s he eating now?  Have they eaten?  Who’s looking after the house?  Where did this literal pile of dirt come from?  Who’s making plans?  What are the plans?  I don’t like those plans.  Who’s sleeping? Who’s awake? No one?  BE QUIET.

The noise, these days.  There is an abundance of noise in our house and in my head.  The temptation is to S-CREAM…then everything goes quiet, momentarily, but that only leaves you feeling worse.

In the past week, I’ve begun my Master’s work.  I am now officially a full-time student of creative nonfiction for the next two years, during which time I will produce my second book-length work of nonfiction, a collection of essays with a disability theme.  I’m bursting with excitement over my course work and about my project.  The challenge is finding the hours in the day to focus and let out that creative energy and get to work.  I’ve got my eye on the wee hours of the morning.  A writer’s life is truly one of solitude, and while as a mother and primary caregiver I’ve always had to balance my need for alone time to create with caring for a family – now, even more so.

I’ve been drawing strength from a remembered line of Brene Brown’s:  we’re doing the best we can.  Brene Brown eventually comes to this conclusion after being hired for a speaking engagement out of town, and then asked to share a room with what ends up being the world’s worst roommate.  Her roommate smokes INSIDE the non-smoking hotel room in the face of Brene’s protest and manages to burn a hole in the curtains; then she pulls out her snacks and after getting chip crumbs all over the couch, she wipes her greasy, chocolate-coated, hands down the armrests to tidy herself up, to name a few of her unseemly transgressions.  Yet even she is doing the best that she can, Brene Brown comes to realize.  We must allow each other grace.  Not be a pushover, but allow grace.  Brene Brown comes to understand that the way to allow others grace is to set boundaries for herself.  She no longer accepts speaking engagements where she has to share a room; that is her boundary to set.

When I want to throttle the being who put a full roll of paper towel in the toilet or the being who walked through the house with their muddy boots on after the floor’s just been mopped, or the being who sucked up all of my time to work, or who sunk their teeth into my calf or whatever it may be; I’m trying to remember my own deep breaths, while balancing the deep sighs of those around me.  Each living creature in my home has needs, every day – surprise! – not surprised – and the responsibility of these needs boils down to two people, which actually then boils down to me as manager/CEO of household affairs.  The temptation is to drop the weight so I no longer have to bear it; allow our lives to crumple at my feet.  Fend for yourselves, I’M WRITING!  I would snarl, but that isn’t really who I am or aspire to be, so instead, I pick my moments when and where I can.  I will turn to dawn for solitude.  On the day Dan and Louie have a day-long errand to run, I just let the kids be without the snarl, and they’re okay, and they learn absolutely nothing from me, other than that I have needs too, and I am completely, 100% okay with that.  Nobody died.  And nobody yelled.  We each revelled in the here and now and the ‘just be’.  We were quite content to leave each other alone for a day.

I found myself raising my voice a few too many times this past week, and not just at my own family.  We are owed an exorbitant amount of money for a cottage rental cancelled this summer and by the time I’d reach my fourth phone call with the company, after waiting an unreasonable four weeks for a clear-cut reimbursement owed to us, I lost my composure.  My argument essentially boiled down to, “Not my problem.  You do what you have to do to GET ME MY MONEY.”  This woman had no power to do any such thing, and I knew this.  We both knew it.  Even as I raised my voice to express my frustrations, I knew this.  The woman on the other end stammered her apologies and then finally transferred me to someone higher up who was able to tell me exactly what is going on with our money.  I took a deep breath and would later recoil at my own ugliness.  To be rude or emotional over the phone with a complete stranger was totally unlike me, completely out of character.  Though I can be pushy, this was beyond pushy.  This was an emotional outburst.  Well it worked.  I’m getting my money back – but in exchange for what?  I lost my inner peace.

There have been signs around me to slow down, take stock, find my way back to our mantra for peace.

In searching for publishers, I came across a promising one named Guernica.  Intrigued by the name, I looked it up, and there was the painting, Picasso’s Guernica, named after the town in Northern Spain that was destroyed by German bombers in 1937 during the war.  The painting has become a monument, a constant reminder of the tragedies of war, an anti-war symbol, and an embodiment of peace that has been dubbed ‘a plea for peace’.  I also came across the book title Are We Done Fighting?  Building Understanding in a World of Hate and Division by Matthew Legge, and I thought I could truly relate.

The feeling of peace being disrupted comes from the greater scenario at play in the background, but it also comes from my lack of solitude and the feeling that something is missing.  Sometimes an odd sensation will come over me, that feeling of looking for something misplaced, like I’ve lost something important to me.  The feeling comes over me most strongly when I’m online or scrolling through social media, trying to find what it is that I’ve lost; the irony is that it’s time and solitude, at a time when the others are sleeping and I am alone; I’m wasting what precious time I do have.

Where is it?  Where is it?” my scrolling finger and senseless wandering seem to demand.  But I never find what I’m looking for.

I allow for one last sign to catch my attention beyond battles with the world and Picasso’s Guernica, my plea for peace.  The sign appears in my day planner, of all places.  I flop open its pages and there, staring back at me, is a simple inscription for the month of May.  Five little words: Bloom where you are planted.

And here I am.  Both feet planted firmly on the ground amid five other beings.  There is plenty of love on which to grow here, it just needs to be cultivated and harvested.  That takes grit and hard work.  Our garden needs plenty of attention, and I’m not the sun, I’m just one measly watering can trying to cover as much ground as possible, watering our patch of earth to the best of my abilities, doing the best I can.  Others are stepping in here and there, doing what they can, but I miss my full gardening crew and I bet you do too.  Many hands make light work.  We’re in a bit of a draught, but we’ll get by.  I still hear the robins chirping; I know the gardener that holds me, and he’s okay.  He’s better than okay.  Our flowers will bloom, we will tend to one another.  And the sun will shine high above us.

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.