Dear Troll Who Thinks My Daughter Doesn’t Deserve An Education

“A writer finds the story,” editor of Geist and one of my fellow MFA classmates, AnnMarie MacKinnon writes. This line resonates with me deeply. Every post, every essay I’m now writing; every thread of my last book is one giant hunt, chasing story down, banging down story’s door.

Sometimes the story comes to you.

What’s the story this week? Well, it’s not looking good. There’s news. This past week, Deondra Foxx, Roberta Buckley and Joey Moss, three beautiful souls from the Down syndrome community, have all passed away, with deep condolences to their families and loved ones.

Deondra Foxx is the beloved little sister of actor Jamie Foxx, who wrote in a social media post, “my heart is shattered into a million pieces.”

An announcement on DSE’s website about Roberta’s death was posted: “Roberta was born with Down syndrome into a world where she faced rejection, segregation and only the bleakest of expectations. She overcame many of these obstacles to live and love with dignity and independence.” Roberta’s mom, Dr. Sue Buckley, is a leading expert in education and development for young people with Down syndrome. Sue is well known for beginning research examining early reading instruction for kids with Down syndrome in the 1980s and she founded Down Syndrome Education International in 1986.

Joey Moss is a legend in the Canadian sports world. Moss was a locker room attendant for the Edmonton Football team and then worked with the Edmonton Oilers for decades after Wayne Gretzky brought him to the team’s attention during the 1984-85 season. You can sign the petition to help rename a downtown Edmonton hockey arena ‘The Joey Moss Community Arena’ in his honour.

And while this is going on, a woman in Toronto by the name of Kayla Sanchez started a petition on Change.org, a very different kind of petition, that came to the attention of the Ds community with the title, “Make Down Syndrome Kids Be Put In Separate Classrooms As Normal Ones.” I’ll spare you the entirety of the description, but it begins: “My son just started kindergarten, where I was heartbroken to learn that there was not one but two children in his class with Down syndrome. I mean first off shame on the parents for not getting the procedure, because instead they have chosen to scar and terrorize normal children.” The petition had only one signature, that of Kayla, and was removed the next day by Change.org thanks to the tireless advocacy of parents ever-vigilant, but was supposedly circulated to other parents in TDSB before its removal. This petition is hate speech and a blatant misrepresentative of an entire group of people.

My first impulse, when I saw this post circulating within my networks of parents, was to ignore it. Wasn’t this just some troll behind the screen, like one of those fake Facebook requests I got from solidly built men in the army? Maybe. Or was there a real, honest to goodness mother out there who genuinely, in today’s society, believed these false notions and horrendous stereotypes and wished to perpetuate the misinformation?

If you don’t know anyone with Down syndrome, if you don’t see anyone with Down syndrome, if you don’t hear about anyone with Down syndrome doing good things in your community, then probably you won’t care to learn more about people with Down syndrome, or maybe you’ll form misguided opinions of your own. Stereotypes. You won’t care to learn more about the good things people with Down syndrome are doing in their communities or what they can accomplish, people like Joey Moss who boosted morale on the team bench and worked hard to do his job. You won’t care about the family members who love their family member with Down syndrome, how Jamie Foxx loved and respected his sister deeply, how she danced at the Grammy’s with him; and you won’t understand how hard family members have worked over the years, and self-advocates, the people with Down syndrome themselves, to not only improve the quality of life of individuals with Down syndrome within the medical community, which has resulted in drastic life expectancy increases, and who have pushed tirelessly for social change because people with Down syndrome can and do learn, dream, work, and contribute meaningfully to their communities when they are properly supported and valued. If you don’t know any better, you won’t understand that people with Down syndrome love deeply and are loved deeply by their family and friends. You might, somehow, not even know their lives matter. Their lives matter immensely.

Groups of people who have been historically marginalized and dehumanized become easy targets for uneducated folks who don’t know any better in their heads or their hearts. To say they don’t know any better is to be generous. I am guilty of once being uneducated about Down syndrome, but being uneducated isn’t an excuse for stripping away another human’s rights. There is no excuse for stripping away another human’s rights. If you don’t know anything about people with Down syndrome and you don’t care to learn, then I suggest you keep your mouth shut.

Though many individuals with Down syndrome lead inspiring lives, I’m thinking of Robert Pio Hajjar , Sherri Brynard, Lauren Potter, Angela Covadonga, Madeleine Stuart, Megan McCormick, Eli Reimer, Yulissa Arescurenaga to name a few, these people have nothing to prove. They don’t do the things they do, become incredible human beings, to show their inherent worth, or so that you and I can feel better about ourselves. They are simply incredible humans.

Children with Down syndrome are loved equally by their family members and we would ask no less of society. And society does love our children, but we still have a ways to go. When someone doesn’t understand why there might be a child with Down syndrome in a typical school classroom, a child that has every right to learn as the next child, we still have a ways to go. When people still use the ‘r-word’ and language to demean those with intellectual disabilities, we still have a ways to go. When t-shirts are being sold on Amazon with the slogan, “Abolish Down Syndrome”, we still have a ways to go. When whole countries decide to target those with Down syndrome – Denmark, Iceland – with goals of being “Down syndrome-free” we still have a ways to go.

I can tell you all the ways as a parent that this person’s words and these kinds of thoughts disgust me; how ableist and discriminatory these practices are. But it’s better if you hear it from a person with Down syndrome themselves.

I will never forget the dignity and grace of South African self-advocate Sherri Brynard. Sherri faced many hardships in her life, including losing her father in a tragic waterfall accident. She went on to become the first qualified teacher in her country and around the world with Down syndrome. When I listened to her speak at the 2014 World Down Syndrome Congress in Chennai, India, she spoke clearly and with conviction, “people like me are aborted,” she said, “we deserve to live!” Every hair on my arm stood on end. Every fibre of my being was attuned to this woman’s powerful message, this incredible woman with Down syndrome standing before me on stage speaking up for her own rights. People with Down syndrome deserve to live, and more than that, they deserve the same support and opportunities in life that we all do, the same civil liberties and freedoms to exist, to health care, education and meaningful employment, and to finding joy and meaning in life.

And for those who are unwilling to accept that diversity is part of the human condition, that seeing and interacting with those who are different from us can invoke compassion and empathy, feelings that make us human and make our communities stronger and better; that people with Down syndrome are here and have always existed, that it’s up to us to take care of one another; that up to 25% of the adult world is disabled, that one day you or someone you love, will also be disabled. If you cannot accept all of these things, then I have nothing more to say to you. Other than I hope when you are old and disabled someone will have the mercy and compassion to look after you when you could not find it in yourself to look out and look after your fellow human beings.

Excluding groups of people is not the answer.

Take a look at the people standing next to you. Look after each other.

End of story.

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.