To Give

My children bring out my best (and worst) qualities. I’m not sure if that makes me sound like a good or bad parent, forgetting that such judgements shouldn’t be made, but I know it makes me a human being. The resulting transformations and affirmations of self come about in two ways: the easy way, and the hard way.

Let’s start with the easy way, shall we.

The easy way was last night putting Penelope to bed. I’m fighting a cold, but she insisted on mommy’s presence and I know why. She is enchanted with our nightly ritual of oral story telling. As I laid downstairs on the couch, feeling miserable, but peaceful and resting, my eyes glued to the page of a book, she tugged away at my arm, “Come on mommy! It’s bedtime! You have to go to bed now! I need you!”

“Oh sweetheart, daddy’s going to tell you a story tonight.”

“No!”

“He’s going to tell you the story of the purple octopus.” Purple’s her favourite colour.

She considered this, and when Dan picked up the thread, playing along, she weaved her way upstairs and into bed. But sleep never came, and so I found myself by her bedside.

“Mommy, now can YOU please tell me the story of the purple octopus?”

Her poor daddy tried, but as though co-conspirators, Penelope and I huddled together waiting to hear the REAL story, the one her mommy would make up. I believe she was employing the same rationale Ariel uses when it comes to her lunch cesar salads. I wash and cut up two pieces of romaine lettuce which go in a square container. I then put one scoop of dressing in a separate container and Ariel mixes the two at school. Salad made, voila! If her dad makes her salad, following the exact same steps I might add, it inevitably comes home uneaten, the comment being, “mommy just makes it better.”

I realized, sitting there at Penelope’s bedside and making up the story of the purple octopus who lived deep down in the ocean and wrapped itself around the submarine Penelope was riding in because it wanted a hug, that I was completely delighted and in my element storytelling with my child. Penelope was equally enthralled, which only served to reinforce this notion I have of my third child being a kindred spirit. We get each other. Our personalities jive. I rarely find myself feeling anger toward Penelope’s behaviours because I understand her so well; I know exactly where she’s coming from. So there’s that, but also because it is easy to do what I naturally enjoying doing in the company of someone who adores and appreciates my doing it.

These are the moments of parenting when I don’t have to stretch myself to grow, I’m simply doing what I love best, being myself, and my children are benefitting. These are the moments that effortlessly evoke my best self.
Now let’s talk about the hard way we grow as parents. The lessons we learn from parenting by taking the long way around.

Often to grow we need to fail. We need to get it wrong so we can figure out how to get it right. Elyse’s hair has been one of those things we have failed at many times, but for which we are striving to get right. For as long as I can remember, my attempts to brush Elyse’s hair have brought on tears. And I’m not talking about a few tears. I’m talking about wailing, screaming, outrage. Not every time, but often enough that there’s a sore spot there. The mere mention of the brushing of her hair can bring wrath and meltdown city (as Dan and I call it). We have tried everything when it comes to brushing her hair. Different combs, brushes, de-tanglers. Mom or dad brushing gently right out of the tub, or when her hair’s dried, or the next morning; Elyse brushing her own hair, keeping it long or cutting it short, brushing more frequently or less frequently, trying to build in a routine, trying to brush at her schedule and pace to varying degrees of success. We’re finally at a better place with her hair brushing – she does it mostly herself, but we still have to help her do her hair. I cannot say that this screaming and crying behaviour from Elyse evokes the best behaviour from me. Of course it doesn’t! At a certain point, her tears left me feeling angry, resentful, and helpless. This has to get done! What do you want from me? I want to scream. It’s hard to admit when you’re a mother feeling like she doesn’t know what her child wants or needs. Thank goodness for siblings and insight.

Over the weekend, Elyse had her dance recital. I should make it clear to you that dance and music are Elyse’s life. She lives through movement, and in moments of tension, we often find solace and common ground through music and dance. Knowing full well I would be on hair duty for the recital, I took many deep breaths in preparation for the tears that would ensue in getting her ready to perform. Even as adults, it’s hard to break a pattern of thought and to think positively about a situation that once, or many times, has caused you emotional hardship. Burn me once…

Anyway, Elyse was a champ getting ready. She let me brush through her incredibly long hair with a comb after Dan did her tub, and she did an initial brushing herself. She staved off the tears that eventually rolled down her cheeks for as long as she could, but then they came, accompanied by short outbursts and wails as I ever gently worked her hair into two buns. Her tears made me feel bad. A dance recital isn’t a necessity in life, and yet I was putting her through this hair torture – for what? But to counter that thought, you can argue that nothing is necessary, and damn it, if my kids start something and reach a certain point they are going to follow it through. Tears or no tears.

I remained calm and composed in my role as hair dresser, though coursing below the surface was a long-standing annoyance over the responsibility and the difficulty of doing Elyse’s hair; the lengths I go not to upset her, the inevitability of her upheaval. On top of it all, I don’t particularly enjoy doing hair.

Ariel wanted to be in the room to watch Elyse get her hair and makeup done. Had it been me in her shoes, I would have bailed when Elyse started crying, but Ariel insisted on being in the tiny bathroom with us, and she was the one who comforted her sister better than I could with comments like “Your hair is going to look so pretty, Elyse!” and “You’re watching Teen Titans! Is that your favourite show?” Standing there, hairspray can in hand, I was amazed by how much Ariel had inside of her to give. She had more of herself to give than I did, of that I felt sure, and in that same moment, I lived an experience I have been writing about and talking about for years; that through her tears, Elyse was also giving all she had to give. She was at her max and that was it, there was no more. Expressing her frustrations about getting her hair done through her tears was all she had to give. I was giving all I had to give too, but I could do better. I could do better and be better by realizing that my child was doing the best she can, and that each of us only has so much to give. Myself included. I could be better by realizing that accepting the people you love for who they are, and for what they have to give, is what unconditional love is all about.

I realized I was setting myself up to fail by expecting that Elyse should behave the way I want her to, the way society would dictate, instead of just accepting her for who she is. Nobody willingly wants to disappoint their loved ones through their behaviour. She is communicating in the only way she knows how. And with that idea came the thought and true understanding of she is doing the best she can. I am too focused on do it my way – the right way – as the only way, when of course that is not true. Elyse, all my children, show me regularly that there is more than one way of doing things. I would be wise to pay attention.

While Ariel pointed the way through her shining example of unconditional love, it was Elyse who forced me to come around the hard way, who reached for that most sequestered place of my heart and called it forth by saying, here, even when it’s hard, this is what it means to love me.

Inclusion by Kari Burk

(The following is an excerpt from the book Snapshot of a Soul Place in the land of special needs, written and illustrated by Kari Burk, with much gratitude and thanks to the author for permission to share.)

“Are you a monster?”
he asked while climbing around
at the playground.
“No!” she said with
a laugh.

Is that cat green?
Why is it green?
I’m not used to seeing a green cat.
Why does it have two different eyes?
Eeek! I’m afraid of it!
Is it a monster?
Where does it come from?
What happened to it?
I don’t know if I can be friends with it.
Yikes! That cat seems weird to me!

I created this Green Cat painting in response to Mielle being innocently asked by another child,

“Are you a monster?”

The love, care and acceptance shared within families and friendships
sometimes has to carry the weight of its opposite,
which is exclusion.

I remember how painful it was for me when Mielle was younger and some
kindly person would have to tell me that she couldn’t participate
in a class or program because she required one to one attention.
I would climb into the car and weep,
and Mielle, oblivious to the problem, would ask me, ‘Why mom?’

In her teens Mielle started talking about ‘kids’ eyes’ when we were in
a grocery store or park. I realized she was aware of children staring at her
because she is different and on occasion this would bring her to tears.
We’d suggest not letting it bother her,
that kids stare because they’re curious
and maybe she could say hello and make a friend.

But her feelings were getting hurt because she felt unaccepted.
She thrives on social interaction and is highly sensitive to failure.

I first saw a person with Down syndrome at eight years old in the corner store
and I did the exact same thing, I stared for a very long time.
The storekeeper was kind enough to notice my bewilderment and talk to me
about this special person which helped me not be afraid.

Children who are exposed to the world of special needs
are more comfortable with differences. Inclusion in whatever way possible
is extremely valuable for all concerned.

I try to stay positive for myself and Mielle but there have been many times
where I too have cried when a wall suddenly appears.

I have to look to my skills and practices to create a door or window in this wall,
to see it as an opportunity more than a struggle,
to move forward with good choices
and keep rowing the love boat gently down the stream.

Author and illustrator Kari Burk is a multimedia artist and landscape gardener who operates Muddy Tutu, Organized Grime and Garden Art in Castlegar, BC.  A graduate of Emily Carr School of Art and Design.  She’s a painter, poet, performance artist, musician, dancer, cartoonist and curator.  She has self-published fourteen chapbooks of poetry and exhibited and performed throughout BC.  Her art is available for sale and by commission.  Kari lives on a Kootenay mountaintop with one of her greatest works of art,  her daughter Mielle.

On Writing

I sat at my desk chair this morning, my mind churning with thoughts, ideas tossing and turning, waiting for that one to pop up to the surface and answer my question; to reveal the topic of the day’s writing like a future foretold by a magic eight ball.

Well, the idea’s arrived and it’s here to stay. The topic of today’s blog post is… *drumroll please!* Writing – yeah!
Writing about writing, that’s so meta, right?

Writing, writing, writing, where to start? To write well, one must read well and often. I just ran upstairs to count the books on my nightstand, which frankly, is looking a little out of control. Thirteen books await my eager eyes. I know I have another one on the way, and a notification from the library popped up that I have another book on hold available to pick up. One of those thirteen books is a hiking guide, disregard that one (unless you’re into hiking, then pick up a copy of one of Nicola Ross’ Loops and Lattes books for local hiking in your area). There were also two notebooks on my nightstand, giving us a grand total of fifteen books. One of those notebooks is a journal where I jot down thoughts, occasionally chronicle my days like in a diary and insert quotations and important lines from books I want to come back to, or remember, or use in my own work later. The second smaller notebook is lined with the names of books I have read. Two and a half years ago, I gave myself the challenge of reading one hundred books that year, and I’ve been documenting what I read ever since. This practice has come in handy! Listing books read has prevented me from reading the same book twice, and reminded me of that amazing story with the title or author that’s slipped my mind.

The book I’m currently reading, Cherry by the great memoirist Mary Karr, isn’t even on my nightstand. It’s right in front of me. I took it with me on the drive to drop off the kids at school this morning and then it followed me into the dentist’s office – just in case. You never know when you might have a spare moment to read and I like to keep my books close (read: bibliophile, much).

Of the thirteen books I’ve mentioned, a few are fiction, several are memoir, one’s for my book club, I believe there’s an anthology in there, a book profiling Canadian authors, then last but not least, there’s a book about writing. At this point, I have to mention Mary Karr’s book about writing, The Art of Memoir, as one of my favourites on the subject, and which has lead me to more of her work (Cheery, Lit). Steven King’s On Writing: a memoir of the craft is also brilliant. I pay attention when other writers whose work I enjoy mention their go-to writing bibles. Recently, Betsy Lerner’s The Forest for the Trees came to me this way after Canadian author Lindsay Wong (The Woo Woo) lauded the book in an interview. Its lovely cover is sitting top of the pile, and is inscribed with this promise: An Editor’s Advice to Writers. Yes, please! Editors are almost god-like in the writing world; they wield an indeterminable amount of power.

Me (lowly writer): Hello there Mr. or Mrs. Editor Sir, uh or Mam, won’t you please take a look at this manuscript and consider publishing my book?
Editor (for publishing house): HA-HA-HA! (evil laugh)
Me: Okay, I’m just going to leave this here, and hopefully you’ll take a look at it.
Automated message reply: Thank you for dropping your manuscript, heart, and soul, into this slush pile. Please take a seat and we’ll get back to you shortly (in six months to a year).

You guys, editors aren’t evil – not at all! But they certainly hold power to make decisions about who gets published and who does not. I love reading books written by editors who provide honest and direct feedback about what gets published and what doesn’t. A book I love for this exact reason is Pat Walsh’s 78 Reasons Why Your Book May Never Be Published & 14 Reasons Why it Just Might Be. I mean, come on! What a title. For any aspiring authors out there, it’s like, just give me the fourteen reasons! And fingers crossed your book doesn’t fall under the 78 reasons why not. I tore through that book, then accidentally stole it from the library after I returned it with a pile of other books, was sure that I returned it, noticed it was marked as unreturned in my library profile, told them I returned it and got them to remove said unreturned status. Two months later I found 78 Reasons tucked onto one of my book shelves, the cheeky devil, and I took this as a sign that I was meant to keep it. Okay, okay, I probably should still return it and buy my own copy, and one day I will, but in the meantime, I’m sure they’ve easily replaced the rogue paperback with the more than twenty dollars in late fees I’ve paid over the years. Now I’m sounding bitter – I’m not, really I’m not. I love and respect my library! Somebody’s going to send me a nasty note about this.
Maybe what I will learn from writing about this experience is that what happens in the library, should stay in the library. You guys don’t need to know all my dirty book secrets.

What I can tell you, hush, hush, is what I’m currently working on. Just a snap shot. This is kind of a faux-pas in the world of writing. In On Writing, Steven King urges writers not to do this. Talking about your writing and sharing pieces of your writing before it’s actually finished is really just a form of distraction and procrastination – touché, King. But when you’re writing a blog about writing, I think then it’s okay.

There’s my book – My Book, book – the gleaming manuscript, polished and waxed, titled and sent out into the big scary world of publishing. Fingers crossed I hear something soon (likely in the next six months, I’m told). That’s all I’ll say about that. Until it’s published, I’m “working on it”.

There’s a new book I’m working on too, but now, you see, all of a sudden I’m feeling shy. Is it because I’m worried someone will steal my ideas? Elizabeth Gilbert talks about this phenomenon in her book Big Magic, how ideas fly in, land in our heads, and while some take up residence, others move on to more accommodating abodes, homes where they can be fully appreciated. There’s a scene Gilbert writes about meeting her new friend Ann Patchett – celebrated writer and book store owner – for the first time backstage at a speaking event. Both American authors, completely unknown to each other before this moment, coming from opposite ends of the country. Naturally, the topic of, So what are you working on? comes up, and they both realize they’re each deep into the process of creating a fictional romantic story about the construction of a bridge taking place in the heart of the exact same Brazilian rainforest. What are the odds? The point is that ideas don’t really belong to us until we make them our own, and that in writing, even if two authors write about the same thing, you may approach it a million different ways. Besides, the book I’m working on isn’t a new concept, it’s been done, just not from the angle I’m going to tackle it.

So, I’ll tell you a bit about this side book project I have on the go. It involves getting rid of something every day and writing about it. I started this project last August after my family of five spent a week at my aunt’s cottage with nothing but the bare essentials: clothes and food for the week, the beach, the sun overhead and each other. There was a laundry basket filled with toys too, but the kids didn’t touch it. And we were happy, blissfully happy. It made me realize how living a life with less could be so meaningful and fulfilling, and I wanted to bring that feeling back home into our daily lives. So far, let me tell you, I cannot believe how much stuff we have to give away. I’ve sold things on Facebook groups, through Kijiji, in a garage sale, through porch pick ups, at reuse shops and to friends. Likewise, I’ve donated items to drop off bins, the Salvation Army (more times than I can count), at Wastewise, posted items for free on Facebook and passed things off to friends and family, and STILL there are more things we really don’t need or even want kicking around. I don’t believe this is a problem unique to my family. I’ve thrown many items into the trash, which tells you something about the things we keep even though nobody would want them or use them – think, dried up markers for examples.

This year I’m waging a war on stuff, and though it’s mostly a losing battle (getting rid of stuff makes you realize how much more is regularly coming in), I’ve had fun discovering and writing insights down along the way. Will this be my next book!? Maybe. I have so many other competing ideas (more on those another day), but if I’ve learned nothing from writing my first book let it be this: you have to be committed. To liken book writing to running, producing a finished manuscript is akin to finishing a marathon. Both take dedication, sustained effort, long hours of training, failure and even injury (!), but it’s the process you look back on fondly once the race is said and done. Whether this project becomes a book or not, the practice of daily writing has been worthwhile, in and of itself, and I highly recommend picking your own daily writing practice project for no other reason than the sake of the writing. Also, because nothing in your life is ever wasted. I repeat, nothing in your life is ever wasted. As a writer, everything is material.

I promised myself I would enter more writing contests this year because that would mean I am doing a lot of – surprise, surprise – *writing*. I’m currently working on two contest entries: one for Fiddlehead’s creative nonfiction contest, the other for ROOM’s creative nonfiction contest, and a third piece for contest unknown. As I write this, I’m remembering that contests have DEADLINES. I just checked, and I only have three days left until ROOM’s deadline. Eek. In completely unrelated news, I have to go. Seriously – but first – I want to share one last writing-related challenge I’ve latched on to. An idea that’s found a new home. You could use this strategy in any area of your life where it might apply. I’m working toward one hundred writing-related rejections. You heard me right. It’s well documented, but maybe less well known outside the writers’ circle, that successful writers, and even their masterpieces, are often rejected dozens to hundreds of times before they find their success. A comedy writer, whose name has escaped me, took this to heart, and decided she would aim for one hundred rejections. Along the way, she was accepted something like 63 times, and ended up getting published in places she wouldn’t have dreamed of trying before. I love the idea! I’ve got my own “on my way to success” board set up, listing all my submissions on one side, and rejections on the other. I have a long ways to go, better get to it!

If you’ve decided to adopt this reframing of failure strategy as I have, then please take these words to heart. Happy writing (or whatever it is that you do) and good luck practicing! I wish you many failures.

Falling from Grace

Children are full of grace.

When I was a child, I was a free spirit for a while, picking up friends and dropping them off as I went. Books were my best friends for a time, but then something clicked and it was friends that meant the most to me. Friendships were the stuff I breathed. Making connections with other people remains important to me; it’s important to all of us. You could argue it’s why we are here.

I recently set up a play date for Elyse with a friend in her class after she was invited to the friend’s birthday party, but was unable to make it due to the timing coinciding with her dance recital. With three children’s social and extra-curricular schedules to coordinate, a conflict in the past may have meant I would have left it, but as Elyse gets older, it’s becoming even more important to me that she not miss out on this social opportunity. A chance to play with a peer and foster a friendship.

When a friend invites her to something, we pay attention.

More and more frequently, in attending conferences and reading the stories and being given advice by the generation of parents who have children with Down syndrome who have gone before us, I’m repeatedly hearing the importance of teaching social skills and supporting social development. Generally speaking, social skills are thought to be a strength in most children with Down syndrome, but of course, every person is an individual. As my friend Debbie Boycott writes in Common Threads, “As with all children, responding to others in a kind, compassionate way, making eye contact, creating a healthy self-image, are all essential for making friendships, working in a job, taking instruction, enjoying others, and showing compassion and empathy for others.”

I remember saying to Dan when I was pregnant with Elyse that just because she had Down syndrome didn’t guarantee that she was going to be a good person – that would be up to us to teach her. He laughed and teased me saying, “yeah, she’ll probably be a jerk.”

“Maybe if she takes after you!” I lovingly jabbed back.

Elyse’s little friend, who we’ll call Marcie, arrives in the afternoon. We were a bit late finishing lunch, so Elyse hadn’t yet finished her pizza. Still, she abandoned her slice to see what the commotion was about at the front door, and she instantly recognized Marcie and gave her a kind welcoming hug. Almost immediately afterwards, all of the children were outside in the backyard, with Ariel, the oldest, taking the lead; Marcie and Penelope not far behind, and Elyse – rushing to get her shoes on – the last one out the back door. Though Elyse lagged somewhat behind, the kids were eventually all outside, all of them together and somewhat playing together. Dan and I smiled at each other weakly, silently each worried about how long this might last.

What I’ve noticed about Elyse is that she likes to do what she likes to do. She often chooses to do what feels good in the moment, and chooses not to pay attention to social conventions. Being able to be in the moment, and fully enjoy what you are doing is an amazing skill, but it doesn’t necessarily translate into being a good friend, unfortunately.

As the kids came back inside, Elyse slid back to the table and her pizza, and Marcie pulled out some craft supplies she brought along with her and sat at the same table. Ariel squeezed in beside Marcie, and the two of them sat colouring, nicely sharing the same page of the colouring book. Again, this was fine. Everyone was engaged and together, though what I really wanted was for Elyse to be playing with her friend.

Dan and I thought it would be best if he were to disappear with Ariel, the big sister with a big personality, to give Elyse a chance to shine and play with her friend. Dan would take Ariel along to the barbershop with him while he got his hair cut, and I would stick around to watch the three girls.

With everyone now up from the table, craft time over, I watched to see what would happen. The girls were looking at toys in the other room, so I went upstairs to fold some laundry and give the kids space. Elyse followed me up. I put on some music so Elyse could dance (one of her favourite activities), but Marcie wasn’t interested in doing that so she wavered between Ariel and Penelope’s room, each of them happy to engage with her. Elyse would not have been happy if I were to turn off the music and suggest she play with Marcie. “Play” can be a difficult, abstract concept for a child, even though we want to believe it’s something that happens naturally.

As it were, Elyse could have cared less about what Marcie was doing. She was too busy doing her thing. While this sounds good at first glance, let me tell you that it was not a good feeling as her parent.

Gauging that Elyse was in a solitary kind of mood, I quickly assessed that the rest of the play date wasn’t going to go well. I decided to take the kids to the park, where everyone would be on an equal playing field and could play at their own physical ability level, but I wanted Dan and Ariel to come too. I was suddenly feeling less confident in my ability to successfully support this play date alone. I pleaded with him to stay and come with us to the park, but Dan was having none of it. “You’ll be fine! We’ll only be gone an hour.” He still thought it would be better if Ariel wasn’t around to interfere.

Outside on the driveway, we readied ourselves for the park. I planned to take the stroller, just in case Penelope got tired, but Elyse insisted I bring the wagon, whining and complaining loudly in front of her friend. I was all smiles and cheer and super accommodating, trying to avoid conflict at all cost with this little friend in tow. I wanted the outing to be fun. Elyse and Penelope fought each other trying to get into the wagon, typical sibling spat, which wasn’t helping matters and only served to further identify the elephant in the room: Elyse completely ignoring her friend. In the end, Marcie asked if she could be the one to pull the other two in the wagon, so she did. I wanted nothing more than for Elyse to walk beside Marcie, hold her hand, say something to her – anything. But Marcie didn’t seem to mind, and chatted with me amicably while Elyse sat sullenly in the wagon.

At the park, Elyse and Penelope immediately gravitated toward the swings, and that is where both of them remained for most of our time there.

Does it matter that I really wanted to see my daughter playing with her friend? As long as they’re happy, but what if you’re not, because you know what it means?

Marcie played using the entire play area, as Ariel would have. She climbed and called over to me to show me what she was up to, and I called back to her in between shouts from my two children to be pushed “Higher! More!” Penelope, truth be told, was on the brink of a complete toddler meltdown, having skipped her nap, and Elyse, master imitator, copied her every word. Under these conditions, it became near impossible for me to try and get Elyse to do something else willingly, where her friend might join her, with Penelope in tow.

I can say, on the one hand, the outing to the park was successful in its own right in that each child seemed to have enjoyed themselves, more or less; but on the other hand, my goal, and the point of the play date, remained unmet because they did not have fun together.

Penelope cried most of our walk home, but thankful Marcie, being a big sister herself and full of grace, understood that little kids cry and didn’t let it bother her. When we got back there was time for a quick snack, then Marcie was on her way.

While I’d tried to shield myself from my own stormy feelings that were rising up, like holding up a flimsy umbrella when the rain is blowing sideways, there was nothing I could do to protect myself from the deep puddle of emotions I stepped squarely in and I was left sitting there muddy and soaking wet.

Why had Elyse ignored her friend?

What skills did we need to teach her in order for her to be able to be gracious with a friend who’s come to play with her?

What have we done wrong? I feel like a failure.

While I struggled emotionally to process these questions and dawning realizations, Elyse and Penelope started fighting over their snacks while sitting at the table, their little hands clawing at each other. This was too much.

“STOP,” I screamed at them. They froze, mid-swipe; Penelope’s bottom lip quivered. I burst into tears, head in my hands. My outburst filled the space in the room.

Dan and Ariel arrived shortly after, thankfully, but I remained pained and terribly sad from seeing my middle daughter struggle with a skill that comes so naturally and effortlessly to my other two. Academic skills are important to me, sure, but being a kind and generous person? Learning reciprocity and being a good friend? Acquiring and demonstrating these skills are non-negotiables.

If there’s one burst of gleaming hope to be taken from this story, it’s that I have seen Elyse play with other children beautifully with my own two eyes several times. Every time I am filled with pride. When she wants to, she knows how to play.

Dan and I know we have some work ahead of us as parents. We know there needs to be a conversation with the school where Elyse spends most of her time. If there’s one thing I took away from the Canadian Down Syndrome Society’s conference in Victoria this past year it’s that inclusion isn’t just about being in the same room as other kids, that’s a first step, but to take it a step further to TRUE inclusion it’s about building a sense of community where everyone belongs. For Elyse to be able to build friendships at school, she needs to feel like she’s a part of the community by being engaged in activities WITH her peers – not simply alongside them. As her parent, I need to make sure that is happening.

I’m often hesitant to write about negative experiences with Elyse because, as an advocate and being the person that I am, I like to focus on the positives, and to be sure, there are many. But to only see and report on the sunny side of life would be to do a disservice to Elyse as a whole person. Human beings are complex. We will continue to plant and water the seeds of friendship, bring light to where we are, shower her with support, and with time, I know in my heart Elyse will continue to blossom. As will I, as her parent.

 

Author’s note: In the hour after I finished writing this piece, still carrying around the emotional baggage and mulling over points, a friend said to me at the gym, “you’re looking strong!” I was feeling the opposite, quite weak, which is telling in that how we’re feeling on the inside isn’t always evident based on outward appearances. It’s like looking through the window on a bright sunny day, blue skies overhead, then stepping outside into the chilly air.

The Perfect Match, by Anna Vos

The day that we said “YES” in May 2014 changed our lives forever.

We were in the process of our second adoption from Ethiopia. This included mountains of paperwork, visits with our adoption practitioner, expired home studies and police checks, doctor appointments, and waiting for ministry approval. We were eagerly anticipating “the call” from our agency.

On May 13, 2014 we received “the call”! We immediately fell in love with the precious little boy with beautiful big brown eyes that stared at us from the computer screen. We could barely contain our excitement as we spoke on the phone with the director of our adoption agency. He wanted to know if we would consider this adorable little boy as a possible match for our family. Without hesitation we were ready to say “yes,” but our director calmly said, amid our excitement, “Just wait, Anna. They think that he might have Down syndrome.” Nonchalantly, I replied, “Oh, okay.” He kindly encouraged us to take the weekend to think and pray about our decision. That is exactly what we did.

Our decision did not change, even though this scenario was not in our original plans. We had completed a pre-adoption “checklist”, and it saddens me to say that we did not check off the box for accepting a child with special needs. We were approved for a child with “minor physical correctable needs”. We are so thankful and humbled however, that God had other plans for us!

After waiting for ministry approval (again!), more paperwork, and court dates, we finally brought our son, Seber, home after an agonizing two year wait. Seber adjusted incredibly well to his new family, country, climate, (although he was not a big fan of Canadian winter weather at first!), language, friends, and many other major changes in his life. He has learned so many new things and every day he astounds us with his many abilities! He has learned sign language, how to read (sight words), and how to speak a whole new language! He loves all sports and he loves playing with his four older siblings. Every day he is proving what the world thinks about people with Down syndrome is wrong, and we are so proud of him!

While recognizing the terrible grief, trauma, and loss that goes hand in hand with adoption, we also believe in the sovereignty of God and that He chose Seber to be our son. Seber has taught us so many things. He has taught us about forgiveness, unconditional love, patience, and how to have a more positive outlook on life by enjoying every moment. He shows us an unlimited amount of daily affection (he loves hugs, and kissing my hair!), and he never ceases to make us laugh. We have a strong supportive community within our church, school, and with the Down syndrome community. We have learned unconditional love and the importance of belonging for those with special needs and the important role that individuals with Down syndrome play in society.

We cannot imagine our lives and what our family would be like without our son, Seber. We are so thankful that God brought him into our lives because, for our family, he’s a perfect match!

Anna Vos is blessed with five precious children and a wonderful husband whom she has been married to for twenty-five years. She loves keeping busy with a variety of different things as a stay-at-home mom. Prior to her twenty year maternity leave, she taught grade five at Halton Hills Christian School.

Ten Things I’ve learned from Triathlon Training so far

Learning something new is hard.  Prioritize.  Last summer, in the spirit of marathon training, and pushing myself to get fitter and try new things, I thought adding in triathlon training would be a great boost to my fitness level.  The additional new challenge was a mistake, at least for me.  Having gone through it, my advice is to tackle one new sports adventure at a time.  The strenuous runs of marathon training left me depleted – too tired, much too tired, to tack on extra swims and bike rides.  I needed my two days of rest.  I couldn’t focus or fit all the workouts required into the week without doubling up on workouts (we’ll get to that), and I wasn’t willing to sacrifice my ultimate goal of completing a marathon by cutting out runs.  Last summer, marathon training took precedence; this is the summer of the triathlon.  One thing at a time, at least when you’re starting out.

Bricks is a real thing, and not the kind you use to build a house.  I’m discovering the joy and the burn of bricks, back to back workouts, this spring.  I’m definitely new to this, and working on adjusting and attuning my workouts to my body’s needs, but essentially you can do a swim, then a jog; a bike route, followed by a run.  Two workouts in a row, however you like, but usually, the run comes at the end.  In theory, you’d think that’s because it’s easiest, but from a fitness standpoint, I’m not sure if that’s true.  The other day I performed my usual long Sunday run, a ritual I’ve kept up faithfully through the winter.  For runners, the Sunday run is familiar, a long jaunt at a comfortable pace.  I made sure to knock out at least hour-long runs through the winter months to keep up some endurance.  On this particular day, I ran thirteen kilometers in an hour fifteen.  I hadn’t meant to run that far, but as the route played out – I had.  I gleefully accepted my family’s invitation for an early Mother’s Day brunch at Cora’s, fed my growling stomach, then proceeded home for an easy two hour bike ride with my friend.  Easy for her maybe.  Pushing to reach the peak of every hill we crested, my legs burned a deeper sensation than anything I’d experienced on my light-hearted run.  My friend laughed at me kindly, suggesting I may not want to run before our ride the next time.  I’m thinking she was right, but am still resistant to giving up my Sunday run, or even moving it to Saturday, or Monday (my day off), but I may have to.  I laid down, immobile for several minutes, on my bedroom floor after almost three and a half hours of moderate to intense exercise, and Dan just laughed at me, “You done?”  While, from a purest perspective, this might not have been a Bricks workout per se, with a Cora’s breakfast in between, it achieved the desired result all the same.  “Bricks” refers to the leaden feeling in your legs, especially after coming off the bike and going for your run, with back to back workouts.  Another combination I’ve now attempted and plan to repeat is the swim/run combo.  Though this combination of activities doesn’t play out in the Triathlon’s swim/bike/run sequence, it’s quite an effective workout.  On my first go, I swam for 20 minutes, about 30 laps, then ran for 30 minutes, 5.5 kilometers.  Fifty minutes of exercise midweek felt great.  The challenge was fitting this all in before getting the kids to school and an employed husband off to work.  You have to find ways to make it work.

Getting injured sucks.  Again, a year ago, while marathon training, I was running more kilometers than I’d ever run before.  I should have considered this was not the time to try something new.  I bought my first used road bike anyway.  My first real ride out on the road, wearing new special shoes with my feet clipped in to the pedals, when the path I was traveling on split, I waffled on which way I was going and came to a stop at which point my feet, firmly clipped in place, failed to catch me and I toppled over.  My gut instinct was to place my hand down to brace my fall.  Big mistake.   I would feel the strain in my wrist the rest of the summer and that effectively cemented my decision to put triathlon training on hold.  When you’re trying something new, like having your feet clipped in, you’re going to fall.  It’s inevitable.  I needed to be in the right head space for that, and know that bracing myself on my side was a better idea that catching the weight of my fall solely on my weak wrist.  I also should have put off getting clip-in shoes until I was comfortable on the bike.  I’ve been out a few times this year now, and I’m just allowing myself to feel at ease with the placement of the gears and how my road bike works out on the road.  Adding in locking my feet in place, as well as cycling on the road with all its inherent dangers, was too much for me to process all at once.  This year, I’m breaking it down a bit, and building my confidence by heading out with friends who know what they’re doing.  Which brings me to my next point.

Training with a friend is more fun.  I enjoyed having Dan as a running buddy for the two plus hour weekend runs we did in preparation for our marathon, but I was just as content to do my short runs on my own.  I actually love and relish the solitary nature of running.  Swimming at the pool, I don’t mind hitting the lanes solo, but when it comes to getting out on a lake?  It isn’t smart to swim alone; I’ve got plans to go with a friend.  Both of my longer cycles have been out with friends this year, and it made such a big difference, especially in my confidence on the road and my ability to get through the ride.  Halton Hills where I cycle is, well, as you can imagine, hilly.  My legs were burning through those rolling hills, but I felt a whole heck of a lot better knowing my friend’s legs were burning too, and that we’d be able to joke about it on the other side.  From a safety perspective, on the bike there’s safety in the peloton.  Cycling also takes a long time!  You can’t hammer out a five kilometer run in twenty eight minutes and be done with it.  No, no!  To get a workout in, you’re out there for at least two hours.  It’s nice to pass the time with someone by your side, and to have someone looking out for you and vice versa.

There are unwritten rules of the sport.  I look to my friends with experience to fill me in on the subtleties of the sport – I’m still learning.  As I stumbled through my first Try-a-Tri using my old mountain bike early last summer, I quickly learned my place as the newcomer, as we were relegated to the least desirable stations on the bike rack.  I learned about the extensive tattooing that goes on with black permanent marker up the back on my leg and across my arm, and how to hang my bike by the rear of its seat.  An official spoke to me sternly about when you have to mount your bike – was it before the start line?  And how you must do the inverse on the way back, dismounting and walking across the line, which makes no sense to me.  I’m going to have to check that again, before my next race, because there are penalties if you don’t get it right.  I tried to bring my phone out on my ride with me and was stopped by another official.  “You can’t bring that out there.”

“I’m using it to track my distance,” I quipped back, trying to appear like I knew what I was talking about.

“Hmm, okay.”  They had announced this asinine rule about phones being allowed on the bike course ONLY if used as a metric device.  I now have a watch, and will leave my phone behind to be picked up for the final run segment of the race, as I love my tunes.

There’s an unspoken motto between cyclist to “look after your own”.  Fooling around by myself one day, cycling through my neighbourhood, testing out my new road bike then stopping before crossing the road, a cyclist dyad came to a halt across from me on the other side of the street.  “Do you need any help?” they asked.  Did I look like I needed help?  Probably.  “No, I’m fine, thanks.”  I waved them on, slightly embarrassed.  They lingered.  “I’m almost home,” I assured them.  Cyclists look out for one another, and a cyclist pulled over to the side of the road, their wheels no longer in motion, may need a hand.  It’s nice to know I’m becoming part of a community.

Swimming, on the other hand.  I swam in the fast lane at the pool for the first time the other day.  I’ve been swimming regularly over the last year and building up stamina.  When I started, I had a hard time finishing a lane of front crawl properly (despite loving swimming my whole life) and now I can swim fifty laps in about half an hour.  I’m not breaking any speed records, but I’m happy with how I’ve improved, and know I will continue to do so.  Anyway, when I arrived at the pool during my usual time on Saturday morning, I looked around and the fast lane had the least amount of swimmers, so I hopped in.  A friend of mine leaned over from the medium speed lane, “Oh, you’re in there now, are you,” she said, a sparkle in her eye, “Watch out for the big girls.”  Well, truth be told, I was jostled, nudged, and passed as these “ladies” somersaulted past me and rocketed themselves off the wall.  Once I came up to breathe and ended up sputtering and choking on water that was kicked in my face.  I loved every second of it.  The big girls obviously have swim experience dating back to the womb, and ran through their drills like clockwork.  I admired their competitive spirit, and I figured out how to stay out of their way.  So unspoken rule number one, don’t go in the fast lane if you can’t handle the heat.

A runner does not a triathlete make.  A word about fitness and transference.  I do think I am a better cyclist because of having my legs trained for running.  Better than I would have been had I not been a runner, at least.  But being a good runner, a marathon runner even, does not make you a good swimmer.  Swimming, I’m coming to learn, is all about breathing and good technique.  I’m trying to read up about it, but I think investing in a swim coach may be worth it.  The swim kicks off the whole shebang, and for some, there’s the added stress of the open water and risk of drowning in a panic.  In my first triathlon last year – I did complete one Try-a-Tri before calling it a season – I completely underrated the importance of the swim.  I love swimming!  How hard could it be?  Hard.  Like, really hard.  Friends warned me that during the swim I might get hit or kicked in the face, and to watch out for flailing arms and legs.  I was the person with the flailing arms and legs others had to watch out for.  I confessed to another friend beforehand that I didn’t think I could sustain front crawl the whole way because I hadn’t practised very much (I’d only gone to the pool twice).  He looked unsure, shaking his head, but suggested maybe I could back crawl for a while.  In the end, during that short swim distance, I swam every stroke in the book.  Except front crawl.  I did front crawl for the first three stokes, came up sputtering and choking on water (like with the big girls), and moved right on to breast stroke, in my comfort zone, which is not exactly known as being the triathlon stroke of choice.  I know I made it onto my back at some point too.  And sideways.  On both sides.  Yikes.

Train hard and reach for a goal.  This year, I’m approaching triathlons as my sole focus, and have put more effort into my swim and bike training.  I’m incorporating weight training and stretching through yoga into my training as well.  I hope this will make me as prepared as I can be for my second ever race, and that I can finish it feeling depleted, but happy with my preparation.  I have a secret goal, too.  I usually keep my goals to myself, but it sometimes helps to share them.  I want to complete the Sprint distance this year, not just the Try-a-Tri, which increases the length of the swim to almost double, and increases the cycle and run distances as well.  It’s the swim I’m worried about, and I think that’s what the majority of triathletes would tell you.  Nevertheless, by the end of the summer, maybe even my first race – we’ll see – that’s what I’d like to do.  I’m not the kind of person who jumps right to the marathon distance, never have been.  That’s just not me.  Instead, I’m the person who makes the slow climb to the top, with missteps and close-calls along the way.  I dangle and scrape by until I’m ready for the next pitch.  To those who start at the summit and tackle the ironman Triathlon distance which begins with an almost four kilometer swim, followed by a 180 kilometer bike ride and ends with a full marathon, I salute you, and maybe I’ll meet you there one day.  One move at a time.  If I do, there’s going to be a tattoo involved, a real one.

There’s a lot of gear involved.  Getting into triathlons is expensive!  Being a runner is awesome.  All you need is yourself, some workout gear (any old t-shirt and a pair of shorts will do), and a pair of running shoes you need to swap out every once and a while.  Done and done.  Okay, if you want to get fancy, you can add in some sort of device and wireless earphones to play music, and a high-tech watch to track your speed, distance and pace.  You won’t get hurt without the extra gadgets though.  And heck, there are ultra-runners who race around bare foot and shirtless through the high-range sierra mountains.

Cycling comes with its own set of paraphernalia.  You’re going to want padded shorts, and even then – ouch.  There are racer tops, which I somehow got suckered into buying.  You’ll need glasses to protect your eyes against bugs and the sun, and a solid helmet to keep you from dying when you fly off.  There’s also bike shoes that clip into special pedals and the padded gloves to protect your hands.  And that’s just the gear on you.  Then there’s the bike, the priciest piece.  I’d never considered the type of tire, rims, seat, frame or brakes my bike had before, but those features are majoring selling points for hard core athletes.  I bought my road bike used, but new road bikes start anywhere from a few grand upwards of $10,000 or more, the price of a small car.  This does not interest me in the slightest.  I just want to get out and ride with the bare minimum of hassle.

There’s the pump you need to inflate the tires and keep them rock hard for maximum performance, and the adapter, that little gold nugget, you need to enable pumping.  A light, reflectors, bell, water bottle holder and (optional) storage compartments to adorn your bike, as well as an odometer or other necessary device to track your distance, speed and cadence (pedals per minute).

With swimming, you need access to a pool, which unless you live in a temperate climate year ‘round, and have access to a lake or swimming pool, probably involves paying some sort of fee to use an indoor public pool.  You need bathing suits, to be sure, and I have tried swimming lengths in the pool without goggles and I do not recommend it.  I’ve also tried getting away with cheap goggles and learned the hard way why that doesn’t work either (because they don’t work).  Don’t forget that stylish plastic cap for your head!

But wait!  Now you want to race and you’re going to swim in open water! For buoyancy, and protection from the elements you’re going to want a wetsuit.  You can rent one for about $50 or, you can do what I did, and buy one used or new.  I got mine used for $100, and have used it more than twice, which is nice, with plans to use it more and get my money’s worth.

Being involved with triathlons is expensive.  At least initially.  See note above regarding gear.  Add in the cost of registration, getting to races, factor in any hotel costs if you need to travel and stay overnight for an early start and did you know, there is even a triathlon suit you can wear?  I bought one after my first race, though I now think it looks ridiculous.  Think of a one-piece cross between a bathing suit and padded bike shorts, and if you’re me, for some reason you’ll buy the one in black, pink and blue with polka dots.  I’m forcing myself to wear it this year, as a penance for the silly splurge.

So why put myself through the financial cost, the scheduling burden, the overwhelming amount of gear, the risk of injury and the challenge of it all?  I think I answered my own question with that last bit.

Multi-sport training is fun.  I love being active outdoors, and I love to challenge myself mentally and physically without putting too much strain on my body.  I think training for triathlons is a good way to accomplish both of those goals.  I’m new to the sport, and I hope to one day look back on this post and laugh at myself gently holding all the knowledge, training and experience from the ledge where I have yet to stand.  Until then, I’ll take things one stroke, pedal, and step at a time.

 

High Five by Debbie Boycott

Presents come in all different wrappings and packages. Of course, we need to open the gift to see the wonders it contains. Not so different, I think, when you are expecting a child.

While I was pregnant with Emily, I had no idea she would be any different than our three other children. She was very active inside me, and I gained a healthy thirty-five pounds. There were no indications that this birth would be any different from my previous ones. Emily weighed 8 pounds 8 oz. at birth, but she was three weeks early. This early arrival didn’t arouse any suspicions in us. Emily was nursing well. When she was born, we were in a room to ourselves for the first few days.

When Emily was two days old, a pediatrician was called in to see her. He was quite blunt and asked if we had a history of mental retardation in our family. At this point, we asked him “why the questions” and he replied the nurses in the nursery had suspected Emily had Down syndrome. He had been called in to observe. He told us that some of Emily’s features, such as her narrow, slanted eyes, small ears, and low muscle tone, indicated she had “Downs”. Emily didn’t have a simian crease in the palm of her hand, which was a common indicator, but this doctor had the crease!

Then the hardest work began, that of telling all of our family and friends. On the one hand, we were sharing sad news and I felt the need to encourage others and make family feel better. But on the other hand, at the same time, we had just given birth to a healthy little girl and we (mostly Dave) were ready to celebrate this.

Almost as soon as Emily was born, I went into “teacher mode” and began implementing programs to help her reach her potential. If the books I read said a baby with Down syndrome would walk between sixteen months and three years, by golly, Em was going to walk by sixteen months. We had an Infant Stimulation worker, Carol, who came to our home biweekly to work with Emily and I. Carol would work on Emily’s language and fine motor development while I took copious notes and made diagrams so I could remember the exercises to work on daily once Carol left. I transferred these exercises to check lists on charts so I could check off ten repetitions of each exercise daily. Carol was an invaluable resource to us, and because she could see we took Em’s development seriously, she invited a physio-therapist from Halton Region to come and do an assessment on Emily and see if she thought Em could benefit from physio input. Up until this date, thirty-six years ago, no child with Down syndrome was on this program in our area.

Mary, the physio-therapist, assessed Emily who scored low on her level of muscle tone, even for a child with Down syndrome. However, Mary could see we were willing to “put in the work” with Em and she became an instrumental part of our program. Mary began visiting other children with Down syndrome as well, and when the numbers became too great, she started group sessions in Milton where mothers would bring their babies with Down syndrome to a central location, and she would work one-on-one with each mom. To alleviate the problem of note taking, Mary conscripted me to be her videographer. I would videotape Mary working with each baby. Mary would transfer this video to a VHS tape which the family could take home and watch to review these important skills. Mary became a great family friend, and she is always inspired to visit with Emily and is so proud of her accomplishments.

I remember thinking that I was fooling everyone when I took Emily out and that no one could even tell she had Down syndrome. One time a lady came up to us in the grocery store and commented on Emily being “mongoloid”. After I recovered from the shock and outdated term for Down syndrome, I couldn’t believe she could tell! Years later, when I looked at pictures of Emily as a baby, I realized I was only fooling myself. I had wanted to “fix” Emily and make her the very best she could be.

I looked into the Philidelphia Institute who had developed a patterning program for children with Down syndrome. I met with a Mom who lived nearby and was on the program with her daughter. After seeing it, we felt strongly the program wasn’t for us. I did read their “Teach Your Baby to Read,” and implemented their flash card approach to building sight vocabulary. When Emily was sitting at various times throughout the day, I would flash the cards in front of her. I made books for her to read from family pictures. By the time Emily reached kindergarten she had quite a large repertoire of sight words, which gave her a bit of a head start.

I did feel Emily was blessed to have siblings to mirror and to love her. She took her place in the family and truly owned her spot as the fourth child, second youngest. She was Mark’s big sister. The children pitched in as much as they could with these daily exercises I put Emily through. When she was learning to crawl, we put a towel under her tummy, which Beckie held up and I would position myself over her and use my knees to prod her legs forward and my hands would move her hands in the proper alternate pattern. I did wear out a pair of jeans in the knees doing this! I remember feeling like Dave got to be the “fun guy” when he got home at night. He would tumble and play with all of the children and wrestle with them on the carpet. He was always wonderful at that, and once he arrived home he was all theirs. The girls took dance lessons, and the boys played rep hockey, and they all participated in Kids Club and Sunday School. Wherever we went, Emily came along and we found all of our friends and family were extremely supportive of Emily and very interested in her development.

When I pictured Emily growing up, I thought her intellectual development was of supreme importance. I guess that is why all of this stimulation was so important to me. In hindsight, if I was making suggestions to new parents, I would stress the importance of social development. As with all children, responding to others in a kind, compassionate way, making eye contact, creating a healthy self-image, are all essential for making friendships, working in a job, taking instruction, enjoying others, and showing compassion and empathy for others.

Emily has always embraced her faith. Faith has never been an issue for Emily. Faith in Jesus just makes sense to her. Her favourite part of the church service is worship. She loves the singing. She does listen to the message and can be very moved emotionally by it. If I am away one Sunday, Emily takes notes for me so I don’t miss out. She copies the sermon points from the overhead. This wasn’t a request from me (I never thought of it), she just picked up the slack. Over the years, Emily has helped in the nursery, and served at seniors’ dinners at our church.

As I mentioned earlier, all of our children participated in competitive sports both in our community and at school. Emily went to watch and cheered for her siblings. When she got a little older, Emily started gymnastics, then ballet, recreational soccer and swimming, all in community programs. When Emily was thirteen, Dave saw an article in the paper about a swim program offered by Special Olympics. He took Emily the following week, and we look back on this as a watershed moment. Emily immediately loved the interaction with new friends, which nicely filled the lagging invitations to birthday parties and outings with school friends. We enjoyed seeing this interaction, and we also valued the fitness component and her ability to shine in her own right while having fun. Two years later, we heard about rhythmic gymnastics being offered through Special Olympics. This became Emily’s sport. She had always loved to dance in her room. Emily is also a natural performer and enjoys the spotlight. As Emily climbed the ranks in this sport, she excelled, and her travels took us to China, Greece, and Los Angeles for Special Olympics World Games, as well as countless competition across Canada, the United States and England.

Emily has had many wonderful opportunities to develop leadership qualities through our local Down syndrome association, HDSA. The Graduate Group plans and organizes social events for their group. As well, these young adults volunteer at HDSA events such as our yearly Gala in March, the Holiday Party, the annual Family Barbeque, and of course, our annual Go 21 walk event. Emily and her good friend, Adelle, go “on tour” in March and speak at many local school assemblies sharing about people who have Down syndrome and highlighting their abilities.
Emily works one shift each week at Boston Pizza in Milton and volunteers at the Darling Home for Kids. She also helps every Tuesday at Foxfield Stable and works with the horses once she has finished her riding lesson.

Dave and I, and Emily’s siblings and extended family, feel that God has generously blessed our family with a wonderful gift, in Emily. She makes us laugh; she challenges us to adhere to the moral standards we uphold. She strengthens our faith, makes us look at the world with awe and wonder, and she shows us what is possible through hard work and perseverance. She is very forgiving and most of all loves a good party.

Emily retired from competing in rhythmic gymnastics two years ago, and is a coach with the Georgetown Butterflies. She is now very involved in competitive swimming with Special Olympics. This past weekend, Emily and I were away at the Defi Sportif in Montreal. Emily was swimming the 100 IM (Individual Medley) and was out touched at the finish line by another athlete. Emily would get the silver medal. As the athletes swam to the outside lanes at the end of the race to clear the pool for the next event, I noticed Emily wasn’t leaving her lane. She waited until the athlete who won the race swam by so she could give her a high five. I had tears in my eyes when I saw what had transpired – an unnoticed event to most. This is our Emily. We are so proud of her.

Debbie Boycott is a retired teacher, mother to five, and grandmother of eight. She and her family were founding members of the Halton Down Syndrome Association, along with three other families. She lives outside of Milton with her husband Dave and daughter Emily.

The Story of Al the Star by Allan McNeill

My name is Allan McNeill. I am a person with Down syndrome.

I will tell you what my life is like with an extra chromosome in every cell in my body. I was slower than my five siblings learning to sit, stand, walk and talk. The hardest was learning to talk, saying words like “hospital” and “world”. I worked hard to learn all these things. My mom was always teaching me, while playing with me.

When I was four years old, I got leukemia. That was not nice, and I was on chemo therapy for three years. The good news is: I am totally better and very healthy today.

I began to enjoy food after my chemo and gained too much weight. So I went to see a nutritionist. She helped me lose sixty pounds. I have kept that extra weight off for many years, by eating healthy and exercising. My friends say I have a lot of willpower.

I swim sixty to seventy lengths, three times each week. I have always liked watching wrestling, and still do that on weekends.

Going to school was great for me. My teachers were wonderful. They were patient, and worked hard to teach me. My classmates would come to my house to swim and play with me. Some kids did not want a friend with Down syndrome – a retard, as they thought – which is a terrible word.

I learned to read, write, do math, but more slowly than my classmates.

I know that some kids with Down syndrome are bullied at school. That never happened to me, as most kids were very nice and helped me. One of my teachers set up a “circle of friends” club that helped me make friends.

I have been in Beavers, Cubs and Scouts. I have been trained as a Scout Leader. For the last fifteen years, I have helped as a leader with 15th Strathcona Scouts.

For twelve years, I was a part time volunteer in the office at a school.

Now, I work at Innomotive Solutions Group of Canada, a company that makes roll up doors for transport trucks and fire trucks. I really like my job and I am learning a lot. I plan to stay there until I retire. The company and my co-workers treat me well and pay me well, including profit sharing and bonuses.

On Sunday morning, I work at my church, as the Sacristan.

You can see that I am very busy, but I still have time, in the summer, to play golf with my brother and dad. We also enjoy a few Blue Jays games at the Rogers centre each year. Most of all, I enjoy talking with my girl-friend Sarah on the phone and texting. We go out on dates and double dates. Sarah is very nice and pretty.

I am a member of the Halton Down Syndrome Association Board of Directors. I am the only person with Down Syndrome on the board. My role is Director of the Graduate Group. This group is adults who have finished high school. We plan social activities, cooking classes, sports events and having fun together.

Every week, I meet with a tutor who helps me with new skills. We read together, talk, write, do some math, play games, cook and bake together and sometimes play a game of golf.

As you can see, we are never too old to learn. I hope to keep learning every day, until the day I die!

Allan McNeill is an active board member with the Halton Down Syndrome Association. He lives in Burlington, ON.

The Best I Can

Ariel is performing a gymnastics routine with a partner in the school’s talent show. Penelope is sitting rapt on my knee, watching her big sister’s stage debut. “I can’t believe I did that!” Ariel says afterwards. The talent show continues, for Penelope – as nap time comes and goes – the show drags on. She’s no longer in my lap. She’s sitting on the floor taking her shoes off and making flirty faces at the other kids beside us. Now she’s standing, swaying her whole body back and forth to the music, and that’s when I see something catch her eye.

“Balls, mom!” She points to the open storage room across the gym with the large red, yellow and blue bouncy balls in sight, a question in her eye. I try to distract her, avert her eyes, willing her to look back to the front, “Look! What’s that?” Four pink ballerinas take the stage, but she’s making a run for it, and now I’m holding her down by the hem of her yellow dress with the kitten on it, and the kids beside us are cracking up. Penelope loves this new game, where she is the star of the show. I check the time on my phone. We’re getting close to the end, almost there. Hang on. But there’s one last lovely singer to go, and Penelope breaks loose like the wild creature she is and makes for the ball room. Another parent tries to intervene; a teacher attempts to coax her out of the room, but Penelope just stands there, her resolve impervious, those glowing half-moons for eyes gazing up from a starry sky of curls. I don’t want to dampen her spirit, not one little bit, but as the parent you’re expected to have control.

I make my way over to my feral child, ducking out of the way of a few other parents, and I grab her. Truthfully, the disturbance wasn’t that big of a deal.

By now the principal is speaking a few words of farewell to the school secretary who is retiring. I have no idea what she’s just said because things quickly deteriorate from there. The next thing I know, I’ve made it into the foyer where my two other children are waiting, ready to go, and Penelope makes a bee-line for the exit, in her sleeveless dress.

I should mention the weather outside at this point in the story. The sky is on the verge of hailing pellets of ice.

Another parent is blocking the door again, helping me out, while I try to rally the troops, “Time to GO!!!!” while chasing after Penelope. I attempt to manoeuvre Penelope into her outdoor gear, but as I do so, she wrestles free of my grasp for the twentieth time by rendering her toddler limbs limp and lifeless. She’s a puddle on the floor one minute – the next she sprints for the exit again. This time I say, “It’s okay, let her go.” I reason, once she feels the cold she’ll let me put her sweater and coat on. Outside, freezing, she is still resisting. She’s fighting against herself, and her own stubborn tiredness.

Now the parents are filtering out of the school and my kid is screaming and kicking her feet in classic tantrum formation. I have a relaxed smile on my face that says, we’ve all been here before – nothing to see here folks – move along.

Toddlers are destined for trouble. They’re learning boundaries and testing their limits – and their parents’. Even as I type this, Penelope’s little face appeared around the corner. “This got wet,” she says casually. She’s talking about her pants, which are now soaked with pee. To clarify, I’m waiting for warmer weather to potty train. She got herself dressed in pajamas and decided to take her diaper off and not tell me. She was sitting on the couch when her “pants got wet.”

Back at the school, the tantrum is over, but my smile is wearing thin; beneath its cloak I’m tired after a long weekend with our three kids and my husband away, all of it culminating in this moment. As I’ve finally wrangled the little beastie into her outdoor clothes, and I’m strapping her tightly into the fold-up stroller I wisely brought along to ger her home, Elyse, in the foreground, throws her backpack on the ground, abandoning it before running off, and yet another kind parent brings it over to where I’m standing. I’m happy for the distraction of Ariel chit chattering along on the walk home revealing her excitement about the talent show experience. I’m smiling hard, for her sake.

I took the girls to my cousin’s baby shower on the weekend, where there were many opportunities to test my patience. Ariel disappeared the moment we got there, then five minutes later declared, “these are my new best friends,” pointing to the gaggle of children she instantly joined. Elyse played with the kids on and off, but then hovered by the entranceway, exactly where I did not want her to be. Elyse has gotten better about staying with me, but if that door were to open, the temptation to walk through it would be too great, and I may lose her into the deep woods surrounding the building. Penelope obviously runs everywhere, obeying no one or nothing but her own toddler instincts. I frantically surveyed the buffet table looking for peanuts, to which she is allergic. Fatal allergies, escape artists and disappearing children – what’s one to worry about? Just for fun, let’s turn off all the lights and add burning candles to the mix (there was a power outage). What could possibly go wrong?

My brain churned with all these impending dangers, and while I tried to relax and settle in with family, doing so with three girls running around in the dark made it nearly impossible. Still, I smiled, I gritted my teeth, and I smiled. You can hide anything behind a smile. A boiling rage, a festering sizzle of discontent, a sense of failure and shame, humiliation and angst. Pain. Fear. Rejection. Don’t let a smiling face fool you. Look past the façade into the person’s eyes. You can’t fake the smile in your eyes, or hide that the light has been extinguished.

My candle still burns bright, even with Dan on an extended work trip away. I had help from grandparents all weekend, and those parents who leaned in to give me a hand when I needed it most. My stores dipped low, but were not depleted. As my children get older, it gets easier and easier to manage on my own (not that I want to!) But everyone needs a break and time to themselves. Everyone could use a support system, and not everyone has one. Anyone who’s ever had kids knows what a toddler tantrum looks like, and if you don’t remember it’s because you blocked that time from your mind for self-preservation – not because it didn’t happen.

As Penelope flung herself through the doors into outside, in the background I heard a parent exclaim, “…but it’s so cold!” The comment seemed directed at me, at my child’s bare arms, at my parenting, but in the moment, I had more pressing concerns, like catching my toddler before she got hit by a school bus. It is SO easy to judge, but the people I care about are the ones who lent a helping hand when it was easy not to, when they could have turned a blind eye.

Which type of person are you?

An Ode to my Son on the Eve of your First Birthday by Kim Reid

Third (and final!) Chapter. A year ago today I was wishing I hadn’t waited so long. I was regretting my foolish pride, and the idea that I knew enough about labour to know when I was in the thick of it. I cried in the driveway, saying goodbye to your brothers, and falling into your Daddy’s arms, worrying that, against my midwives’ requests, that I would be delivering a baby on the side of the highway in the middle of winter. Your Auntie Sam and Nana promised me we would make it, and they were right. We JUST made it.

Minutes after arriving I was in a gown, and they were calling for backup and asking me not to push. But you, my sweet prince, were not going to wait for anyone. You knew where you were headed, and were ready to get there. Mere minutes after arriving on the maternity ward, the midwives placed you in my arms for the first time, and all was right in the world. You were our biggest little bundle, all blotchy and swollen, and I stared at you for hours, soaking in every crease and wrinkle on your sweet face. You have hands like Papa, bear paws, which even as a newborn looked so strong and secure. I was in awe of your strength the first time you reached out and grabbed my finger, strength that I still admire everyday as you continue to move mountains. Our people were there within minutes to shower you with hugs and marvel in your glory. Your brothers kissed your soft cheeks and wanted to be the first to hold you, sing to you, and show you their Spiderman toys. They loved you the minute they saw you, and have promised more times than I could count that they will protect you, support you, and love you forever.

Our first day home, I laid in bed with my four boys and cried. Hormones and fears took over my emotions, and as if he could read my mind, Henry said “he’s just so perfect, Mom, I can’t believe that he’s our baby”. And for a brief, but tremendously powerful moment, I knew that he was right. Those words echoed in my head while I stared at your sweet little face, in awe of your beauty, and filled with wonder about how you looked so different than your brothers in their first days. I spent hours laying in bed, inspecting every inch of you, tiny curved pinkies, adorable gaps between your toes, and long and defined creases across your little palms. And finally I said the words out loud, and then a midwife said them out loud, and then a doctor, and then they became a part of us. A part of us that first brought fear of the unknown, but now brings great pride and joy.

We were passengers on a roller coaster of emotions for the next few weeks, but through it all, we held you tight, watched you grow, and felt our tribe welcome us in with open arms and open hearts. I felt comfort watching your brothers hug and kiss and entertain you; I felt excited listened to Papa telling you about boat rides at the cottage and how you could sit on his knee and take a turn being the captain. I felt at peace when tears slid down my cheeks after coming home from the grocery store and seeing you sleeping peacefully on Nana’s chest while she read, or hearing Daddy singing you James Taylor from across the room. These moments, all of these moments and so many more, reminded me that we were exactly where we were meant to be, and who we were meant to be. Life with three under five can be crazy, and we had good days and tough ones. We got busy; birthday season was upon us, the days felt long, but the weeks short, and then before we knew it, spring had sprung and we were able to get outside and feel the light upon our faces again. It felt warm and familiar, and reminded us how lucky we are to have three beautiful boys to share our life with.

You, my sweet Duncan, were the perfect baby. You slept, you nursed, you smiled your sweet and infectious smile, you babbled, and you made the world, our world, fall in love with you. The past year has been the best of my life because you and your amazing brothers were in it; because now our family is complete, and because I could not have asked for a sweeter, happier, or kinder soul to share our lives with. You are easy to love, and impossible to forget. You touch the lives of those around us with your cheerful smile that shines so bright it lights up a room, and so warm it makes me feel like I could hug you forever and it would never be enough. Thank you for reaching out for me when I enter a room, I’ll never get over how amazing it is to feel your love. Thank you for smiling your biggest smile when Daddy, or your brothers, or Atti, or Izzy do something silly. Thank you for amazing us every day with your strength and determination. Thank you for cuddling into my shoulder and rubbing your cheeks against mine, and thank you for your sweet slobbery kisses. Thank you for loving books the way I do, and for loving music like Daddy does. Thank you for hugging your brothers when they need it, no one brings them comfort and makes them happy the way you do. Thank you for making me feel complete. Thank you for choosing us. Dunc, you are special. You are brave. You are strong. You are wonderful. You make us so proud. And I love you today, tomorrow, and forever with all my heart.

Kim Reid is a mother of boys, lover of learning, happiness enthusiast, and proud member of the Down syndrome community (our sweet baby boy, number 3/3 has T21). Our boys keep our hearts, our schedules and our laundry hampers full, and continuously inspire us to run fast enough to keep up, while living slow enough to appreciate the beauty in the little things.