What my Kids Crave the Most

A father bemoans the inequities of the Easter bunny’s delivery of bounty on Facebook. “Please parents,” he pleads, “can we just stick to chocolate and candies this year? So I don’t have to tell my kid why the Easter bunny brought his classmate a bike, and my kid only got chocolate.”

Aside: this post is in no way meant to undermine the religious underpinnings of the Easter holiday, but rather I’m focusing on its commercialization. On the pressure each holiday brings to buy my kids stuff.

I’m a person who loves celebrating special occasions, but what I don’t love is the pressure to buy into all the paraphernalia and trappings associated with each holiday. Well, I do and I don’t. Items that can be reused year after year are wonderful. When it comes to getting new stuff, I liked getting gifts as a child (and arguably, I still do), but as an adult I find it tedious work buying trinkets at best, and at worst: wasteful, unhealthy, and extreme. Spoiling our children to the max on special occasions borders on harmful not only for our bank accounts and the environment, but in what it’s teaching them to value. Let’s face it: an abundance of junk is overstimulating for children and underappreciated, even if that junk has a hundred dollar price tag on it. Even if it doesn’t cost an arm and a leg, too much is still too much. This is the trap I fall into: it’s cheap, so it’s okay for me to buy more of it. Take candy, for example. It’s easy enough to come across, but kids are going to get sick from eating too much of it – or cavities, or obese, or form life-long habits leading to an unhealthy lifestyle. Note: I said too much candy. I’m definitely not against some. If it’s too many toys, consider this. A toddler is more likely to play with a toy if they only have a choice or two or three in front of them, versus say, twenty. At twenty, the toddler walks away, overwhelmed. There is research to back this up: less is more.

Yet, season after season, I’m still out there, curating content to fill the stockings to bursting, ordering that last gift online to fill every nook and cranny under the tree because sometimes I get tied up in the myth that to show my kids I love them, I need to buy them stuff; and that if my love for them is superior, then so too should the gifts I provide for them. I’m guilty of perpetuating another myth of materialism – that it brings happiness – times a thousand. I buy enough chocolate eggs to feed a small army because these are the traditions I grew up with. I learned to associate more stuff with more fun! Because who doesn’t like getting more stuff? Especially as a kid who is entirely dependent on the adults in their life to buy them things. Precious, precious things! Like Seuss’s Once-lers’ thneed that everyone, everyone, everyone needs (note: no they don’t). Stuff, for the sake of stuff.

The Easter bunny visited our three girls. While we encouraged Ariel to write a letter to let the Easter bunny know her wishes as she bombarded us with requests, we were quick to remind her to keep her expectations in check.

“The Easter bunny isn’t like Santa,” I told her, “he doesn’t bring presents.” She nodded her head solemnly, but I know that’s not what she was expecting or hoping for because in the past, the Easter bunny has brought the occasional present. I don’t think there’s anything wrong with this, per se, except that my kids don’t need any more presents or toys, and you know what, they are happy, completely joyful, living with less of the things they don’t need.

Come Easter morning, on her way down the stairs, almost three-year-old Penelope picked up four hidden chocolate golden coins. She was so happy, she ran all the way back upstairs and climbed into bed to show me. “My gosh!” she was saying, “My gosh!” she couldn’t believe her luck, and she hadn’t even seen the baskets of candy downstairs yet; she didn’t even know about the egg hunt ready to go. Dan and I were thrilled for her, mustering up our best excited faces in response to her appreciation for the mundane in the early hours of the morning. Her glee turned my reaction into real and true enthusiasm. Her innocence left me feeling hopeful and inspired. If our version of Easter had ended right there for Penelope, it would have been a fantastic day.

In lieu of the toys a part of me wants to give my kids on Easter morning, I’ve taken up a practice my parents carried out for us in our teen years, the giving of essentials as gifts. Yes, there were chocolates and candies, but in addition each girl was given a new pair of shoes – and this is the important part – that she already needed, as well as a small stack of clothes for summer: a few t-shirts, a dress, or pair of denim shorts. Simple and practical. In a less than proud moment, I caved and got each girl a new stuffed animal too (of which they have dozens), but maybe we can overlook that and move on to how my children received their gifts.

The girls were overjoyed. Elyse especially gravitated right to her new rubber rain boots and held them up proudly in the air. She reached for the boots before even the chocolate in plain sight. “Look at these, mommy and daddy!” She needed new rain boots and I could sense she appreciated having that need fulfilled. Penelope walked excitedly around the house in her new runners, and wanted to test them outside, and Ariel was thrilled to receive her first pair or lace-up shoes. If tying laces doesn’t make you feel like a big kid, I don’t know what does. I spent a few minutes teaching her how to tie a bow, and she was off and running with a new skill. Each child played with their one new toy, the stuffed animal. Each child devoured copious amounts of chocolate. We all searched for eggs, which were then divided equally, and the kids had a really fun time, we all did.

What stuck out to me was the kids’ reaction to their new clothes and shoes. If it were any other day, they would be excited to receive new clothes, true, but it isn’t cause for celebration. Our kids are very lucky in that whatever they need, we are able to buy it for them. As childhood is such a transient time, each season generally warrants a new mini wardrobe. With three girls, we certainly do the hand-me-down thing, and also accept used clothing in good condition from friends, but even still, they get spoiled with new purchases. It’s so easy for them to take these purchases made on their behalf for granted; how could you not when they seemingly happen every season? By giving them items they need for summer, it was a statement: this is a special occasion, and receiving new clothing is a gift and something to be thankful for. And the girls were grateful because you know what? This clothing came from the Easter bunny! So it must be special.

Giving your children clothing on special occasions isn’t going to erase inequalities between families, but it is sending them the message they have many things to be grateful for and that it isn’t toys that make the holiday fun anyway – it’s family. Spending the time together, watching the girls’ reaction to their Easter baskets and their detective skills in the Easter egg hunt, made my morning.

What the girls actually receive means less than the traditions we are building as a family: decorating Easter eggs, the egg hunt, and a large bacon and egg breakfast Easter morning. The time we pour into our children, into each other, that is what counts.

As moms and parents, we put a lot of pressure on ourselves to get it just right, but my kids cared more about my willingness to engage in their games – my enthusiasm about their Easter treasures – then the actual treasures themselves. They were looking to me and Dan to gauge their own excitement. Well, except the chocolate. Sugar is sugar, and they’ve got that one figured out.

The best thing then, that you could ever give your child on Easter morning, or any day of the week, is your love and attention. Forget about toys and sugar, love and attention is what they crave the most.

Raisin’ Hell

At some point in adulthood, everyone needs a toddler in their life. Those belligerent little darlings. The things they say. The things they do. The mirror they offer into our own idiosyncrasies. This fleeting time of inane obstinacy. Defiance for the sake of defiance. Toddlers are, after all, miniature human beings learning how to regulate their emotions. One minute they’re up, the next they’re throwing a tantrum and crying hysterically, before tears dissolve into giggles – they were down, but now they’re up again! – at the sight of something as plain as a hat, or a sister, or a fluffy bunny rabbit you’ve made to hop up and down. Silliness reigns in the world of the toddler, as does autonomy of self. What begins as an “I do it” during the second year becomes a full on challenge of who exactly is the boss around here and what are the boundaries, if such a trivial thing as boundaries even exists, anyway.

Toddlers like to try on phrases and ask questions that make you blush or burst out laughing. Case in point, on our way to Sunday dinner at Dan’s parents’ house, Dan and I were engaged in a serious conversation about our jobs, our futures – real adult stuff – when Penelope pipped up from the back seat in her sweet little voice, “Daddy! Are you wearing pants?” She was genuinely concerned, so he assured her he was.

For the record, Dan normally wears pants, and there had been no aforementioned pants conversation that either one of us was aware of. Who knows what’s going on in that exploding synaptic toddler mind of hers? Pants or no pants? That is the question. I guess, in fairness to Penelope, Sandra Boynton characters are constantly putting clothes on the wrong body parts, or not at all, and these are the books we read to our children, the half-naked animal role models we portray, so of course she’s confused. Dan asked her back, “Are you wearing pants?” Her “yes” was confident in reply, and you could tell there was a satisfaction in knowing that she and her daddy had both got it right: pants for Sunday dinner, check!

Toddlerhood is also a unique time period in our lives where we seem to have a beautiful and simplistic window onto the world, because you see, the toddler sees things as they are; each new specimen of life (living or not) is a novel delight to their nascent senses. Second case in point, while changing her diaper, Penelope exclaimed, “Look at this, mommy!” holding up a piece of yellow Play-dough she’d be moulding in her hand, “this is beautiful!” and she stretched out the word beautiful, as though marvelling at its syllables as well.

Later, while bathing, and though I was downstairs clearing the dishes, and she was up with her dad, I could still hear her excitement, “Hey! I made bubbles with my bum!” Ariel, her seven-year-old sister, deeply appreciated this comment.

There is the trying on of words and phrases, and a great appreciation for an ever expanding world, and then there are the lived experiences; especially those you’d rather forget, like closing a finger in a doorway or falling off a stool or bothering someone bigger than you and getting bopped on the head for it. These hard won insights, also known as “learning the hard way”, are frequent during the toddler years. Maybe that’s why these are the years we mostly, if not completely, forget – in the name of self-preservation? Though surely, we retain the muscle memory of our falls, the sensory experience of burning fingers that time we took our mittens off in the cold; or the taste of chalky earth, the sting of soapy bubbles in our eyes. These memories come early and stay with us, I’m sure of it, even if we don’t completely learn or want to unlearn how to avoid them.

A memory I will certainly keep with me forever from Penelope’s toddlerhood years, in addition to her pleasant disposition, affable personality, our hikes in the woods, library time and gymnastics classes together, will be the time she shoved a raisin up her nose just to see what would happen.

I was driving along, completely ignoring my children in truth, as all good mothers do, and listening to an audiobook at that, (Girl, Stop Apologizing – I’m not!) when I heard a sob from the back seat. A quick look in the review mirror revealed Penelope was distressed.

“Ow, ow, OW!!!!” she wailed.

“Penelope! Penelope! What’s ‘ow’? What hurts? What’s the matter?”

I gave her a lunch box of snacks to keep her entertained. I shouldn’t be getting disturbed right now, but I’m feeling less annoyed, more concerned as her distress is genuine.

“Right here!” points to nose, “the raisin!”

“What!? Did you put a raisin up your nose? Is there a raisin up your nose!?”

“Yes! There’s a raisin up my nose right here.” Wail, wail.

Now, I have to tell you. I’m grateful for this kid’s competent verbal skills. I’m less impressed with her research methods.

“Okay, don’t worry! Mommy will get it out,” I say out loud. Inside, I’m saying what the fuck am I supposed to do now?

I decide I need to assess the situation and so I pull over into a Tim Horton’s parking lot. Thank god for Tim Horton’s everywhere. I tilt her head back and can see the raisin, barely. She’s stopped crying, and I stick my finger in to try to get it out, and it’s immediately evident this is a rookie mistake that will accomplish nothing. Think Adelle, think. I call Dan. He doesn’t answer. I text him, EMERGENCY, ANSWER CALL. He picks up this time. I let him know it’s not really an EMERGENCY emergency, more of an inevitable emergency if I don’t do something quick.

I have two children in the car with me. We were en route to one of Elyse’s appointments when the wrinkled fruit and Penelope became one.

Dan has no good ideas and is as perplexed as me. He suggests going to the appointment and asking if they have tweezers. Being the parent not directly responsible for the raisin kid, he, appropriately – not too flagrantly – finds the situation funny. I hang up with a new action plan in mind. I WILL make it to the appointment, but first we will stop at a pharmacy, buy tweezers, and extract a mucousy raisin.

I don’t need to tell you I got the raisin out, though I did, with some tears and much protestation on the part of my toddler. What I do need to tell you is more of a question: is this going to happen again? Or will she have learned her lesson? Will I ever feel comfortable putting raisins in her lunch pail for her to snack on again? Only time will tell and perhaps none of us will ever understand the intricacies and mysterious ways of the toddler.

On our stroller walk to pick up her sisters later that day, I offered Penelope a snack. She took it, then didn’t want it, then ADAMANTLY demanded it back, then refused it again a short while later, as though insulted I would ever have given it to her. I couldn’t help myself, “Penelope, you crack me up!” I could tell she liked that line, and was mulling over its meaning.

“No,” she said, “you crack ME up!”

Whatever you say, Penelope. Whatever you say.

Everyone has a Beauty

My friend Emily and I spoke to 500 elementary school students today in grades four to eight. That’s at least five hundred more kids that got to see what a person with Down syndrome can do. We weren’t able to fit in the whole student body due to time and space constraints, but after our talk, which went well, we had a few extra minutes to visit with the kindergarten students and show off Emily’s Olympic medals.

Three kindergarten classes were smushed into one, and while the kids fidgeted in their seats, I introduced myself, and told them a little about our talk with the older grades and why we were visiting the school. Emily stood beside me, adorned in her red and white Team Canada rhythmic gymnastics suit with the rhinestones, looking glittery, fit and fantastic. She showed off a few of her moves with the ball and clubs, and then it was time for questions. Predictably – if you know kindergarteners – once one child asked the question, “I like your outfit,” several more kids tuned in with the same question, which was endearing and Emily gave each one of them her undivided attention.

Their questions aside, the moment that struck me as enduring came in the aftermath of our act. At the moment I turned my back, a little boy came up to Emily and said, “You look beautiful.” Just like that. I turned to see his earnest face, and suddenly feeling bashful with what he’d said and my eyes on him, he ran back to his seat. Emily took it in stride; she’s used to this kind of adoration and attention being a special Olympic athlete, I imagine, but I’m still processing the remark.

What struck me are two things: one, that old adage, “Beauty is in the eye of the beholder.” That little boy had every right to tell Emily she was beautiful, because you could tell, in that moment, the way he saw her, she absolutely was.

And two, a lesser known adage perhaps, but one that I heard spoken at the World Down Syndrome Congress in India several years ago that has left a profound impact on me is that “Everyone has a beauty.”

Everyone has a beauty. Everybody.

Sometimes you just have to help others to see it.

What’s Your Story?

I was going to write a blog about blogging, and that blog may or may not have included the list of ideas for blog posts this week running through my head. One such tentative post idea I titled Tri-ing. That title surfaced in my stream of consciousness on Saturday morning as I suffered through my swim. I’ve thought about writing a post about swim training since the elderly man with trim features, who’s always at the pool, said to me, “Wow. You must have A LOT of energy.” I wasn’t sure how to take that: was it a compliment, that my swimming looks robust, full of life? Or a disparaging remark, along the lines of, “I don’t know HOW you swim that many laps in such poor form, being so inefficient.” I’ve chosen to take it as a compliment, and so we can move on.

Then came the idea during lunch out with a friend. This friend is also a cherished colleague and skilled copy editor. She has copy edited my manuscript and will be working with me on a few other projects as well as we grow our careers together, and she brought up “segue”, which I incorrectly spelled “segue way” in another blog post, despite having looked it up. I hadn’t outright asked for her input, but I was more than glad that she told me. Prior to the lunch, my friend had conferred with her husband before bringing the misspelling up with me. Her husband told her explicitly NOT to bring it up with me over lunch, but it was eating away at her. He made her promise. We had a good laugh over that. Then I told her I might have to write a blog post called “segue”, and she shook her head vehemently, and we laughed again, “oh no, no, no!” she said waving her hands, shaking her head in an emphatic no. My friend wouldn’t appreciate the attention, so I won’t do that. Which is a perfect segue into this next bit. The master idea that has floated to the top of this week’s pile (because that IS how you write a blog post!) The role of stories in our life, and a project, Common Threads.

When I say “Common Threads” I want you to think about chromosomes, which are threadlike structures, and the common humanity that unites us all. In a nut shell, Common Threads is a collaborative project, a place for families and individuals with Down syndrome to share their stories that I’ve started through my website. Our stories, and the stories we tell ourselves in our head, define us. When we know each other’s stories, we’re much more likely to feel compassion and understanding for each other. As author/photographer Peter Forbes puts it, “Stories create community, enable us to see through the eyes of other people, and open us to the claims of others.”
When I found out I was carrying a child with Down syndrome, it was words and stories that would mend my heart. It was memoir after memoir that allowed me to process my grief over a loss of normalcy, that showed me I wasn’t alone, and where I was able to challenge my own misperceptions and preconceived notions. I was on a journey: adrift in the sea of my mind, paddling furiously to the island of my heart. “So it is,” wrote Jean Vanier, “that people with intellectual disabilities led me from a serious world into a world of celebration, presence, and laughter: the world of the heart.” Words and stories were the current that took me there, that deepened my understanding of the importance each individual brings to the world.

In truth, today’s blog is mostly a plug for Common Threads! If you have a child with Down syndrome, or YOU have Down syndrome or a sibling or other family member with Down syndrome, and you are Canadian, I hope you will consider submitting your story here. Anyone and everyone can subscribe to Common Threads, to read the stories, or if you don’t want to know when new stories are posted, just pop your head in every once in a while and see what’s going on. At the very least, I hope you will read the stories, which you will see posted in the coming weeks and months, and share them with a friend who may need to read them. In case you haven’t already clicked on one of the casually inserted links above, you can read more about the Common Threads project here.

“There is no greater power on this earth than story,” wrote author Libba Bray. What’s yours?

A Great Irony

“In order to accept other people’s disabilities and to help them grow, it was fundamental for me to accept my own.” ~Jean Vanier

Those who know me may find it hard to believe there was ever a time when I was anything less than sympathetic to the cause of the rights and inherent value of people with Down syndrome. But the truth is harder to hold, and I sit down with it now, grasping at its blurry edges, as the full picture comes into focus.

There was a time when I wanted nothing to do with people with disabilities. I spend many hours volunteering in my youth: caring for babies and children – not surprising; then with the elderly and those with mental illness – but I found that too depressing for my soaring spirits; with the downtrodden and hungry, which of course filled me with admiration for my own good deeds; with the illiterate, for I’ve always been hungry to teach; with animals, because before I knew I loved children and would teach, I had a tenderness for animals and a need to care for them. But never, not once, did I choose to volunteer with those with disabilities.

There’s an ugly memory that haunts me from when I was around nine years old. My best friend’s mom worked at the local children’s centre for disability and our hometown hockey team was doing a meet and greet for these poor disabled children. For – it was clear – that was how they were viewed: poor and disabled. When my friend invited me, I wasn’t sure I wanted to go along, but I did anyway. Some of what I saw scared me. Children in wheelchairs with twisted limbs I didn’t understand. Children incoherent and incomplete and in pain. I could see despair on their faces and I looked away. What if this form of anguish impacted me? What if one day I found myself in a wheelchair or without my wits? This was supposed to be a celebration, but the whole set up, however well meaning, felt fake to me, a sham. How could one possibly be happy without all the benefits bestowed upon the fully abled? I didn’t sense genuine happiness from these children, and I left wishing to distance myself from that world as far away as I could. And so I never once volunteered with people with disabilities. Never. Once. Until…

Over time, you could say my outlook matured. I did, after all, play with the little boy Jeremy at my school who had Down syndrome. My best friend and I loved this curious creature whom we played with at recess when it suit us. One day he fell off the play structure and hurt himself. While woodchips were plastered to his face by his snot and tears, he reached his arms towards me and I hoisted him up. When he wrapped his limbs around me like a baby koala I held him tightly while my friend ran to get the teacher for help.

I eventually coached gymnastics to kids of all abilities, including kids with Down syndrome, but somewhere, a small part of me knew I had kept myself at a safe distance from that sad community I once bore witness to. A community I never wanted to, hadn’t asked, to be a part of.

The birth of our second daughter changed everything. Once never, until…

Until I took the time to get to know people with Down syndrome, I would never fully understand what they had to offer.

Now, when I volunteer my time speaking to students in schools, often alongside my friend Emily who has Down syndrome, I make sure to tell them the story of my own mistakes so they know how far I’ve come. That it is possible to understand something, like what is right, in your head, but not truly feel it in your heart.

The story I tell them goes something like this:
“When I was an elementary school student like you, there was a little boy at my school who we’ll call Jeremy. Jeremy’s sister was my age and Jeremy was a few years younger than us. Jeremy was a little boy with Down syndrome. My friends and I used to play with him sometimes at recess.
One school day, we were having a school-wide track meet. Everyone in the school got to run in a few races. We had a huge playground at my elementary school with a big open grassy field, so that is where we would be running our races. When my teacher told me, and the other kids, to stand at the start line, I was nervous. This was going to be my first running race ever. I had to run 100 meters.”

At this point, I get the kids to start the race, “On your marks, get set, GO!!!”

“When the teacher yelled go, I ran as fast as I could around the field. I ran so fast that I won the race.
I was still out of breath when I was called back over to the start line. It was already time for my next race. This time, I had to run a distance twice as far.”

I ask the kids to tell me how far that would be (good, they’re paying attention), then we start the second race together, “On your marks, get set, GO!!!”

“I’m running, running, running. I used the same strategy as the first race, which was to run as fast as I could, but this time I could feel that there were kids behind me. I used every last bit of energy I had. I pushed myself to get to the finish line and I did it! I won again for the second time that day!” The kids all cheer.

“Kids I didn’t even know were coming up to me and patting me on the back. I was feeling pretty great.
But the next part of the story is where things get tricky. I was soon feeling not so great.
Two of my best friends were waiting for me at the finish line. One of them stuck a water bottle in my face, which I gratefully accepted and guzzled the whole thing down. All the water was gone. The next thing I knew, my two best friends were giggling. I started to laugh too, until I realized I wasn’t in on the joke. And that they were laughing at me.

“That’s Jeremy’s water bottle!” my friend said. If you remember, Jeremy was the little boy with Down syndrome.

“Argh, you guys!” I threw Jeremy’s water bottle to the ground and wiped my mouth like I had been poisoned. My friends ran away, and I was left standing there, embarrassed and angry. Poor Jeremy. If he was feeling thirsty after his race, he would have no water to drink, but I didn’t think about that.”

As I finished telling this story to a large group of students today (in French, actually!), all the kids in the room fell silent, letting the weight of that final pronouncement set in. The next part I love, because I get to go back and fix the past, or at least make amends by helping to improve the future. I ask the kids why they think I threw Jeremy’s water bottle and how they would feel if someone did that to them? Then I ask them the most important question of all: what could I have done differently? Every time I give this talk the answers blow me away. Children understand about kindness; how to give it and take it away. They have knowledge of that power and it is our job to teach them to use it wisely.

We spend time talking about kindess and the true mark of greatness. I remind the students I may have won two races that day, and while some would see that as a mark of greatness, where I still had a lot to learn was in how to be a friend to a person who may not be seen.

I tell students I have met people with Down syndrome from around the world, by traveling to the World Down Syndrome Congress in India and Scotland, and you know what I’ve learned? That people with Down syndrome want to be treated like everybody else: with love, respect and kindness.

That when there is an absence of those things, and a lack of connection, then there is anguish and there is pain for all involved. (but I don’t say that last part to the kids, I don’t want to scare them!)

The great irony came at the end of today’s talk, which I happened to be giving at my own daughters’ school. As I finished telling the story of throwing Jeremy’s water bottle to the ground, my daughter Elyse, who has Down syndrome, sauntered across the room and came to sit on my lap. She reached for my water bottle, which stood on the table behind me, and as I looked on at my friend Emily performing a dazzling ribbon routine on the screen, one of her Olympic performances we were showing the kids, Elyse took a big messy slurp out of my water bottle. She didn’t throw it to the ground or drink all the water. She just looked up at me with her big brown eyes, through her wire-rimmed frames and said, “Thank you, mommy.”
You’re welcome my sweet girl. Thank you.

How To Advocate Like A Motherf*#%er

Tips for parents looking to advocate on behalf of their child with different abilities at school.

“Write like a Motherfucker” is a Cheryl Strayed reference, the author of Wild and Tiny Beautiful Things. You can read the story of write like a motherfucker that inspired my title here, but for the time being, let’s focus on advocating.

First of all, do you see what I did up there? I didn’t write out the word “motherfucker” in the title of my blog, because I’m just not comfortable doing that. That is my first piece of advice: don’t plan on doing something you aren’t comfortable with, such as planning a talk around the details of your child’s genetic condition, unless you are clear and comfortable on those details and the telling serves a purpose. E.g. When I talk about Down syndrome, I don’t go further into the chromosome discussion than that they’re made up DNA, which contains our genes (which make you who you are). I don’t talk about how genes code for proteins, and how proteins perform key functions in our bodies because really, where am I going to take it from there?

The flip side to presenting the uncomfortable then is to stick with what you know. And what you know best, what everyone knows best, is their own story. Tell the story of how your child came to be; how you felt and dealt with those feelings, what you learned, and how you feel now. Maybe that’s too personal. Maybe you’d rather stick with the facts.

Another idea: stick with the facts. If you want to say what Down syndrome is, for example, go for it! Three copies of the twenty-first chromosome. A natural chromosomal arrangement. John Langdon Down was the physician who first grouped and identified the traits commonly identified in people with Down syndrome. One in 800 babies in Canada is born with Down syndrome. This is all interesting information and you should definitely tell it. What makes it even MORE interesting is if you can add in a personal story that’s relate-able and age-appropriate. For example, in speaking to elementary students, I talk about the time in grade 4 when I won two running races in a row, and then guzzled down a random water bottle that my friends handed to me that actually belonged to a little boy with Down syndrome. When my friends (who thought they were being hilarious) told me who the water bottle belonged to, I threw it to the ground and wiped my lips in disgust. I ask the students questions about why they think I did this (is Down syndrome contagious – no!) and what they think I could have done differently? This story segue ways into talking about choosing kind. I also share a book that represents a beautiful friendship between a little boy and a little girl named Isabelle who like to play together, because kids with Down syndrome like to play the same games any kid does.

Which brings me to my next idea. If you’re lacking stories of your own, or just don’t feel comfortable sharing your personal recollections, why not share someone else’s story? My friend Isabelle, by Eliza Woloson, is the book I was referring to, and a quick google search will reveal several others. Books are great starting points for initiating key discussions with students. With older students, a meaningful quotation is a nice touch. I used this one from Wonder, by R.J Palacio, “Greatness lies not in being strong, but in the right using of that strength. He is the greatest whose strength carries up the most hearts by the attraction of his own.” This quotation fit in well with my story, maybe there’s one that fits in well with yours or touches on an idea you want to explore? Also, scour professional websites. Lick them clean for good ideas. The Canadian Down Syndrome Society’s website is full of brochures and helpful information about Down syndrome. That was the first place I went to as a new parent and the best source to gather concrete facts for my presentations to adults and children alike.

If you’re talking with students, come prepared with questions of your own. Kids love to get involved in what you are presenting and to share what they already know.

Create a PowerPoint that includes beautiful images of your child. Eighty percent of us are visual learners – capitalize on that. Then, whatever it is you decide to say that accompanies those images, it may be best to write it down. My husband, who presents content for a living, is comfortable speaking off the cuff. He uses point form notes when presenting to an audience and elaborates from there. I, on the other hand, prefer to have a detailed script in case I need it (because I will). I might not, but it gives me comfort that if I blank in front of an audience I have something to fall back on.

The very first time I spoke to anyone about our story, period, I read the newspaper article I had written. That was it. The subject of my child with Down syndrome was still too fresh and emotionally charged for me to trust myself with anything other than words I had written down. Keep it simple, and small gentle steps as needed. Whatever it is you choose to share, you will make an impact. When we open ourselves up, making ourselves vulnerable to others, in this way they come to trust us and what we have to say. I always get the most attentive, still audience, when I’m sharing a personal story, but that may also be because I love me a good personal story. What do you love, and how can that translate into advocacy?

Maybe you aren’t comfortable with speaking to your child’s class at all, and I should point out that is TOTALLY OKAY. There are many other ways to advocate, and get your child’s class the information they need. Invite a self-advocate, such as a person with Down syndrome that you know has a reputation as a speaker, to come and talk about their life. Share books, videos and other resources with the classroom teacher, such as the teacher guide put out by the Canadian Down Syndrome Society. Inform the school/teacher about any important events related to your child’s diagnosis, i.e. community fundraising walks to raise awareness (Go21 in the Ds community), or a special day or month, such as World Down Syndrome Day (March 21) or International day of persons with disabilities (December 3). Encourage your school to participate in the WDSD school contest, if you live in Halton, or equivalent in your area (and if there isn’t a contest, maybe your association could start one and you could be involved in that!) Write a letter to your child’s class that includes helpful information, or a note to the parents.

Remember that advocacy isn’t about one special day, but something every parent does for their child on an ongoing basis. I have found positive, regular communication and exchanges with my daughter’s school to be one of the most effective forms of advocacy. When others see that you care, they’re more likely to care too.

Happy advocating, and remember, be true to you. Don’t advocate like a motherfucker unless you really want to.

*A huge thank you to a fellow parent and friend who sent me this question of how best to advocate, which in turn prompted this post.

The Original Four

Whoever said families are supposed to be useful was wrong. Families stick together. Sure. Blood is thicker than water. Whatever. But families as a useful entity, as helpful to the individual? I don’t buy it. I would argue they can do as much damage as good. Let me explain. The individual usually ends up with their first family because they were born that way. Luck of the draw. Nothing more than an exaggerated case of finders keepers, losers weepers. I found you first. I get to keep you. The members of the family may have no more in common than the roof they share, and the gene pool in the backyard.

I visited home to spend time with my original family unit, with the parents who found me first, and lo and behold! My brother happened to be down with three of his four kids. It is extremely rare and unusual for my brother and me to find ourselves at my parents’ house, without our spouses, at the exact same time. Yet that’s precisely what happened. The stars aligned perfectly for a meeting of the minds of the “original members only”.

With six cousins finally fast asleep upstairs, I walked into the family room of my childhood home, the roof that has remained standing over my head for thirty-odd years, and I assessed the situation. Not much has changed. The Leaf game is still on the TV and there sat my mom, my dad, and my brother. “It’s the original four!” I let out. Not particularly funny, but the comment prompted the tiniest crack of a smile on my brother’s face.

If there’s one particular area in which I do find my family useful, it’s in making me laugh.

I asked my brother about his summer plans, and he explained they’re planning a family trip to Atlantic Canada. This got the original four fired up. Advice! Clearly this admission of plans was a cry for our helpful tips and advice.

“Dan and I took the kids on a summer trip there two years ago!” I exclaimed.

“Mom and I were there,” dad said with the zeal of getting a good conversation going.
The conversation shifted to the drive down. “What was the name of that one town we stayed in, MJ?”
“St. John,” my mom said without missing a beat.
“Right, well, you don’t want to stay in Dartmouth,” my dad warned.
My brother and I gave each other the knowing look of siblings, cheeks puffed out, holding our breath for what came next,
“Dartmouth is like Waterdown, it’s the armpit of the big city, really.”
And that did it. I met my brother’s eyes again, and we exploded with laughter.
What!?

That’s the thing about family. You’re okay as long as you can laugh together.

“Waterdown is the armpit of Burlington,” dad continued on, undeterred. More cackles of laughter.
Did I mention my brother lives in Waterdown?

“What was the name of that town again, MJ?” My brother and I can’t breathe. My mom rolls her eyes.

Let’s take a moment to pause and ponder here. How is my dad insulting the town where my brother (and many other good Canadians) live supposed to be helping my brother plan his trip? And why are my brother and I finding our dad’s innocent comments so incredibly funny?
“There are so many great beaches,” I offer, catching my breath, trying to brighten the subject and illuminate the Atlantic experience.
“Oh, except that one beach…” I remember aloud. “There was like a million jelly fish! So many the kids couldn’t even swim, and we were so unbearably hot!”

Dad: “Check out the Confederation Bridge. It’s incredibly long…actually, I remember looking down when we drove across it and it kinda makes you feel sick.”

Me: “Oh! You should stay in a cottage through Airbnb. Did I tell you about the cottage we stayed in? It was great, but we backed right into the woods a few kilometers off the road and the bugs were terrible. Actually, Ariel freaked out because there were giant mosquitoes.” My mom nods her head, confirming the giant mosquitoes claim. “Ariel was screaming hysterically in the back of the car because a few mosquitoes got in, and we couldn’t calm her down. The situation was ridiculous to the point of hilarity.” My brother looks at me. He looks at my mom and dad.
“Sound great, you guys. I don’t even think I want to go anymore.”
Hey, don’t mention it. What else is family good for? We certainly aren’t meant to be useful, that much is obvious.

My dad launches into a new set of instructions, complete with directions on where not to go, and I grab a pillow and bury my face in it, doubled over. If nothing else, under all the roofs I could have landed, the finders who could have found me, I drew the short stick, and I guess that makes me pretty lucky.

Be Kind, or else

I’m going to write a blog about kindness on a day when I’m not feeling particularly kind. I’m not feeling particularly unkind, just kind of blah. You know when you have to face down something difficult? It can be like standing at the top of a roaring waterfall with no way to fight back against the current. The jump is inevitable, you have to do it. It’s a long ways down, a far distance to go before the splash and the security of knowing you will resurface. I woke up with the water rushing all around me, sloshing in my head and ears, dragging me to the crest of the descent. I went over belly-up, kicking and screaming – or at least that’s how it felt getting going this morning. The cascade wasn’t pretty. Anyone who has kids and sees March break coming knows what I’m talking about.

So let me get to the point. Because we’re here for only a short while, and we’re going to talk about kindness today, dammit. Spoiler alert: I will touch on the ending of R.J. Palcio’s book Wonder (if you haven’t read it, and don’t want me to ruin the ending, this is your cue to leave…wait, come back! It’s not in a blogger’s best interest to tell their readers to leave. Just skip over the next two paragraphs, and quit whining about it already. Forget that. Be kind. No name-calling.)

The book Wonder, which I would argue is written for children and parents alike, is the story of Auggie Pullman, an intelligent boy with severe facial deformities and medical concerns who is about to attend middle school for the first time. The issues of acceptance and kindness are central to the book. At the end-of-year graduation ceremony, the school principal reminds his students in a speech, “Courage, Kindness, Friendship, Character. These are the qualities that define us as human beings, and propel us, on occasion, to greatness.”

He goes on to remark:
“Greatness lies not in being strong, but in the right using of strength…He is the greatest whose strength carries up the most hearts…He is the greatest whose strength carries up the most hearts by the attraction of his own.” The principal is of course referring to the boy who showed true strength and courage throughout the entire school year, just by showing up, in the face of ignorance.

He is the greatest whose strength carries up the most hearts by the attraction of his own. Wow, that’s powerful. And to me, that evokes kindness, compassion, empathy.
This way of being reminds me of a great philosopher, visionary, and disability-rights activist, Jean Vanier, who writes, “theirs is not a life centered on the mind. So it is that the people with intellectual disabilities led me from a serious world into a world of celebration, presence, and laughter: the world of the heart.” He describes the relationship between the one who is healed and the one who is healing as constantly changing places. Everyone has something to offer, and we all have times of need. In his book Becoming Human, Vanier writes about our fears of those who are different from us, “…because we are not clear about what it means to be human…we have disregarded the heart.”

Kindness, or at least the form of kindness where we must appear vulnerable in front of the cool kids to do the right thing, isn’t a weakness then, it’s a strength. A strength of the heart. Allowing ourselves to be vulnerable by showcasing and accepting our strengths, as well as our weaknesses, is what makes us human.

I love the tie in with disability, because having a disability or being viewed as disabled is so commonly perceived as a weakness in our society. But we must also accept and acknowledge that it is a strength. Differences can be perceived as weaknesses or they can be perceived as strengths. No matter how you spin it, it’s important to point out that what we perceive, or society perceives, as our greatest weakness can in fact be our greatest strength.

I’m getting derailed here. I’m supposed to be talking about kindness, and I’m talking a whole lot about strength. I guess that’s because what I’m getting at is that kindness, and our great capacity for compassion and to feel empathy for another, is a huge strength, maybe the greatest one we have.

Kindness is contagious, and it helps us to build connections. I experienced this when I responded in kind to the caring words that came my way when I started my new blog. I felt compelled to reach out to another writer and compliment their writing. The compliment was genuine, but the feelings of kindness that had first been directed toward me helped draw it out.

Kindness is hard-wired in our DNA and essential to our humanity (even if it’s hard to admit it when you’re having a grumpy day), but you still have to choose to be kind. “When given the choice between being right or being kind, choose kind.” Another quotation in Wonder, this one from Dr. Wayne Dyer.

And if you’re going to choose kind, that kindness has to start with being kind to oneself. For me, that kindness looks like not berating myself for reading a book when I should be writing, or taking too long to start writing, or producing writing that isn’t good enough (the theme of this morning is writing challenges). In truth, I panicked slightly once I realized the kids were all out of the house, and so I better get to work NOW, TIME is running out! But where to focus, I have no idea WHAT I’M DOING (though I have lots of things to do), until I took a deep breath. Inhale. Exhale. I walked the dog. I made myself two fried eggs and a piece of cinnamon honey toast so that my belly felt warm and full. I drank my tea. Then I patted myself gently on the back, and said, “it’s okay, take your time. You’ll come around.” I read a book, Heroes in My Head by Judy Rebick, for half an hour. Finally, without judgement, I sat down and I wrote a blog. The blog in front of you. Part of me is still kicking and screaming into the mist, stuck in that downwards flow, but mostly I’m one with my surroundings now. One with the beauty of nature around me. With kindness: that’s where it all starts.

In the Face of Failure

I have a lot of good things going for me right now: a new website and blog I’m proud of, speaking engagements, a finished manuscript ready for publication, national conference presenter, a roof over my head, and a husband, family and friends who love me.

Maybe I need to remind myself of these great things in the face of failure, in the full throes and embodiment of it.
At exactly 7:28 p.m., on the last day of February, I looked on from my folding chair in the spectator aisle as my daughter and her friend high-fived their Taekwondo teacher, Master K. From the corner of my vision, I saw my phone light up in my purse. I reached for it casually, picking it up and scanning the notification. As the girls got their boots on, and kids shuffled past me in a flurry of frenetic activity, I hung on to hope, and immediately opened the email that had arrived. The email I’ve been waiting months to receive.

UBC sent me the following message:

“Dear Respected Applicant,
We regret to inform you…” my heart stopped there. I slouched down in my chair, and re-read the message. I didn’t get in to the Master’s program I so desired.
“…almost 300 applications. The caliber of the work was high, the rankings were very competitive, faculty had to make some difficult decisions.”
Wrap it in a bow, make it look pretty, then sugar coat it any way you want. I didn’t get in. My heart was set on it, and it didn’t happen.

What about the people who wrote letters for me? MG Vassanji, a highly respected, award-winning author; my sister-in-law, a creative writing professor in charge of Master’s admissions in her own right; my good friend, a college prof and successful copywriter – have I let them all down?
And why? Why didn’t I get in? Is it because the competition was stiff? Because I used a relative as a reference? Because I haven’t yet published in a serious journal or won any awards? Because I submitted my first earnest attempts at fiction alongside my polished non-fiction excerpts, or they didn’t like my thesis project, or I didn’t explain myself well? Because my writing’s not good enough? Because I’m not good enough? I don’t believe in that last one. And you shouldn’t ever either.

There are a host of other reasons why I may not have gotten in. Maybe I put my name in the wrong box, or out of order.
To this day, I have my suspicions I didn’t get early acceptance into the teacher’s college consecutive education program after high school on the basis that I mixed up my first and last names in the boxes. What is your surname versus your given name? Oops. I couldn’t follow the instructions, and so they never even looked at the rest of my application. Or so I’ve imagined. But you know what? We’ll never know. And I’ll never know why I didn’t get into UBC’s program this time, either. And you know what else? It doesn’t matter.

At the risk of sounding grandiose and self-important, I trust there will be other great things coming my way, that the universe has a plan for me, and a way of working itself out.
If I had gotten into that consecutive education program out of high school, I would have never gone to Western, and never met my future husband, the love of my life, and experienced all that followed.

You know what else? After my failure to get early acceptance into teacher’s college, I dedicated the rest of my university years to making sure I would get in the next time. I worked even harder to that end. And guess what? That hard work paid off. I applied to six teacher’s colleges, including driving all the way from London to Ottawa with a friend to take a French competency test as part of one application. Then, during that highly competitive double cohort year, I got in. I got accepted into every single one.
When the timing is right, and if it’s what I’m truly meant to be doing with my life, I’m confident I will get into a Master’s of Fine Arts program, too. The same can be said for publishing my first book, winning a contest or receiving some form of recognition as a writer.

As we drove home, I asked the two seven-year-olds in the car what you should do if you fail. They both pipped up, “Try again! You have to keep going! Never give up! That’s called perseverance.” I told them they were wise beyond their years. They didn’t understand what that meant, but that’s beside the point.
The point is, I don’t pretend to understand the mysteries of the universe, but I have faith and I will persist. Hell, you can bet I’m going to work even harder now, and whether I eventually get in or not, it will have been worth it.

Perhaps it’s foolish to announce my failure to be accepted into a prestigious writing program at the moment I’ve officially declared myself as a writer to the world. Or maybe, just maybe, it makes me human.

How to Find the Perfect Book

What I’ve learned from reading a hundred books, two years in a row.

 

There is so much more to reading than the mere act: choosing a good book is an art form in itself. Yet, books are for people of all ages, stages, abilities and interests, and I guarantee you there is a book – or ten – written specifically for you. You have what it takes to find it without being a bibliophile or getting a degree in book-ology. There’s many a story that will reach right into the core of your being, take hold, look you dead in the eye, and say, “There. This. I hear you. This is why you are here.”

I long for those books, the ones that get me, that seem to be speaking directly to my inner voice, conversing in tongues or love languages or whatever other voodoo that seems to take place. Finding the right book, simply put, feels magical.

But how does one go about hunting down the perfect book, that elusive species that isn’t necessarily Heather’s pick and on the bookstore’s shelf front and centre (though that’s not a terrible place to peruse)?

And for those who don’t have time to read a hundred books a year, how do you maximize the time you do have by narrowing down the books you need to get through to find The One?

 

Here are my tips for happy reading, and finding the right book:

 

#1 The shiniest, most widely acclaimed, award-winning books aren’t necessarily the show stoppers.

Don’t get me wrong. I love a newly-released, highly-decorated hard-covered title like the next book-lover, but these aren’t necessarily the books that will resonate with you. Many books that earn high praise are marketable, which is not the same as a well-written, deeply moving story. Save your hard-earned cash, and wait until the book comes out in soft cover a year later. If people are still talking about it then, it may be worth the read.

 

#2 Visit your local library. A hidden gem may jump up at you off the shelf.

I’ve discovered many a new best friend, and treasured story walking past book stacks. Trusted librarians curate content for the end of the stacks, and guess what? Those librarians know what they’re talking about! I’ve found diamonds looking back at me from the exposed shelf. On this note…

 

#3 Search for books specifically in a topic that interests you. Browse by section in your library or beloved book store.

When I’m in the mood for a memoir, I visit the autobiographical/biography section in Chapters, and sure enough, there are often several titles that catch my eye. A few of these books, found in this method, have defined me as a writer. The same goes for the library. Who knew (however obvious this seems to me now) there was an entire shelf in my local library dedicated to writers and writing. Of course there is! Some of those books are terrible! But some have served to enlighten, to educate, and have spoken to me so loudly, I can’t believe I may ever have missed their call, which brings me to the next point…books you should ignore.

 

#4 Don’t read a book that doesn’t interest you!

This may seem obvious, but how many people do you know who refuse to abandon a book they aren’t enjoying? If you start reading, and the book isn’t good, please, do yourself a favour and put it back or return it. Start anew.
Your time is precious, and you don’t owe that book – or that author – anything. Someone else will like that book – it’s just not for you. No need to feel bad about it! Nobody’s feelings will be hurt if you stop reading one page in, or even – GASP – half way through. I have done both. I’ve also pushed through to finish when I shouldn’t have, and taken ten times longer to read a book that should have taken a few days. A great strategy to help decide whether or not a book is for you is to read the cover flap, and then let the book flop open to a random page and read it. Alternatively, read the first few pages before you even step away from the shelf, and trust me, you’ll know, you’ll just KNOW.

Books that I’m enjoying – and yes, my happiness is paramount here (even if the book is bringing me to tears) – I usually read quickly, unless it’s a longer book. I’m talking two or three days – maximum two weeks. If a book takes me longer than a week or two to read, there may be a problem. I either need to reprioritize my reading time (unlikely), or (more likely) the book isn’t great. I want a book that draws me in, that makes me want to read through dinner, that calls from the front seat (because I took it with me JUST IN CASE) when I’m driving the kids to school; that I crack open while sitting on the bleachers through my kids’ gymnastics practice. The book I read from the passenger seat on the 45 minute drive to my in-laws, whom I adore, and when my beloved family gets out of the car to go into their house, I physically have to tear myself away to join them. I want a book that demands to be picked up from the moment I first wake up, to the last second before I fall asleep. Believe me, I have read many such books – they do exist! And you deserve to read them too. Hold out for the books that grab you, and if they don’t, and you’re not enjoying yourself – as Queen Elsa says, let it go.

 

#5 Keep that friend who reads in your back pocket.

Unless you personally know or happen to be a book critic, chances are your next best bet for discovering quality reads is second hand from that friend who reads. I’m talking about the friend you know who reads a lot. Maybe they’re a librarian, or teacher, or writer, or English major. These are all safe bets. If they’re your friend in the first place, it’s likely you will have a thing or two in common, and chances are good you may like the same type of books that they like. Maybe not. It’s worth the risk to ask your well-read friend for their favourite titles. Don’t be shy about this. If there’s one thing your loves-to-read, lives and breathes books friend loves, it’s talking about books. Indulge them! You may not regret it, and you may discover the book that imprints for life on your heart.

If all else fails, go for complete randomness. You might end up pleasantly surprised. I’ve walked into used books stores, and come out with an essential read. I came across one of the best books of my life this way, Lucy Grealy’s Autobiography of a Face. Again, independent book stores are owned by people who love books. If you tell the store owner or worker what you like, they will likely be able to hone in on a book suited to your tastes (probably more so than the big-box book stores).

Whatever your level of engagement with books, your commitment to the search, I wish you great literary fortune. When it comes down to it, books represent the greatest wealth there is, our collective thoughts and histories. May you be greedy in your search to find the best of them.