Elyse’s First Summer Camp Experience

It’s the final ten minutes of “my work day” before pick up and I’m sitting here wondering about Elyse’s first day at gymnastics camp. Did she follow the rules and meet camp expectations? Did she fit in and make some new friends? How did toileting go? Craft time? Transitions? Lunch time? Gymnastics? That’s a lot to worry about in one short day.

But by far the most important question over-riding the others is: did my girl have fun?

Ariel is at camp this week, too. A different camp from her sister. Having her big sis around would have undoubtedly made things easier for Elyse, but they are two different people, individuals with distinct likes and tastes, and so for Ariel, that means art camp (her #1 choice), a choice that doesn’t suit Elyse’s preferences. Elyse chose gymnastics camp. We have built a good rapport with a local gym in town – they know Elyse, they’ve taught her before, and so my hopes heading into pick up are high. Is it selfish of me to want Elyse to be able to go to a local camp and have fun? Somewhat, perhaps. I do feel like I’m a better mother/person when I have respite time from my children, but what I want deep down for Elyse goes beyond my own needs.

One of the greatest gifts a parent can bestow upon any child is to foster their independence. It occurs to me that keeping them safe – a parents’ greatest responsibility – may run counter-intuitive to choices that foster independence. Balancing these two factors, safety and independence, is tough work.

I want to keep bombarding Elyse with the messages you can, you will and YOU ARE! Look at you! You’re doing it! You’re doing it by yourself right now. This is the voice I want her to hear in her head even when I’m not around (when I am, she’d likely roll her eyes and tell me to stop).

YOU’RE doing it! Because if I’m the one always around to help her, then she never will be the one to do it. As her mother, I’m so in tune with her needs and emotions that it’s hard not to intervene. In this way, love can be limiting. Strangers are expectation-less, which can be really good or really bad. Different people also do things in different ways, which forces children to learn flexibility and become adaptable. Essentially, attending summer camp is akin to learning basic survival skills.

I’m amazed at the skills Elyse gains when she’s away from me. In preschool, her friend Gracie showed her how to properly execute a high five. Elyse, with her limp wrist, wasn’t doing it hard enough. “No, no, Elyse! Like THIS!” said Gracie, who then smacked Elyse’s hand with a good whack. Elyse fired a harder high five back, and got a pat on the back from her friend and a nod of approval.

This summer, watching her big sister, she learned to ride the swing in our backyard by herself. She also came home from a trip to grandma’s house having learned her new signature move: the two thumbs up. I’m pretty sure my mom was also the one who sealed the deal with potty training, a few years back when Dan and I were away. And school. At school, Elyse learned a second language and she learned how to play with friends. I’ve now seen videos of her playing at recess with her friends (thanks to a thoughtful educational assistant) and it’s glorious.

The point is, you have to let them go a little if you ever want them to fly away on their own. You just need to get the timing right so they don’t fall head first and break their little necks. Maybe start them off with a parachute and a safety net – or don’t. See what happens.

The moment of truth. I pick Elyse up from camp, and somewhat anxiously await my turn to speak to the head counsellor. Hardly able to contain myself, I blurt out, “So how did it go?”

“Honestly,” she says, “not very good.” She rephrases. “Well, she was a different kid in the afternoon. If Afternoon Elyse could come back again tomorrow that would be great.”

“What happened with Morning Elyse?”

She walked me through the morning’s hardships: not listening to her coach, not staying with her group or following along in group activities, locking herself in the bathroom and screaming, and refusing to do crafts. She then explained, to my great relief, once they figured Elyse out, things went MUCH smoother. They determined Elyse wasn’t listening to her coach because her coach was trying to help her do things she can already do, and wants to be doing independently; that hiding in the bathroom was her way of coping; and that crafts aren’t her thing, as I had mentioned to them beforehand, and they used the strategy of giving her books to read instead. Then she was a completely different kid. She had a fantastic afternoon. She participated fully and listened to her new coach. She had fun playing the group games with the other kids. In other words, once Elyse felt her needs were being met, and that she was being seen, heard and understood, then she felt free to be herself, her best self.

I know her behaviour was challenging, potentially the most challenging of any kid at that camp on that day, maybe that week, maybe of the whole damn summer. But you know what? She’s worth it and so are the other kids. When we choose to include, everyone wins. Every kid deserves a chance, and all it really takes for many children with disabilities is for a few caring and attentive adults to observe, to truly listen, and to see the child in front of them to make the necessary accommodations and small changes that make a BIG difference because they mean everyone can be fully included. There needed to be allowances. Elyse needed appropriate choices, but she also needed boundaries. They matched Elyse with a coach more suited to her temperament. Wouldn’t it be great, and make good sense, if we all had bosses like that? People who brought out the best in us?

Elyse isn’t going to stand for being underestimated. She doesn’t always go about showing it in the right way – Elyse does things HER way to a fault – but her point is valid: guide me, but let me show you what I can do.

Now, to answer the most important question – did Elyse have fun? The rest of the week went like this: arrive at camp in the morning, Elyse shouts, “yeah, gymnastics camp!” She has a fun day; the coaches are happy. I pick her up at the end of the day and ask, “did you have a fun day?” to which, in reply, she never once wavers, “Yes!!!”

A huge thank you to Cartwheels Gymnastics and especially to the camp counsellors for seeing Elyse for her potential and helping her realize all that she can do. The world needs more small businesses like this one doing all that they can to make their space an inclusive one.

What the World Needs More Of

I spent the last few days at a friend’s cottage with my two oldest girls. I can tell you there is nothing so endearing to me, nothing that makes my heart soar more, than witnessing others being good to my children. My friend and her husband showered my kids with love, and it was a beautiful sight to behold. What the world needs more of is people who aren’t afraid to turn to another with open arms and say, I see you, even the funny bits that are sticking out that you tried to tuck in; the parts you don’t want the world to see, but that I see anyway. I see it all, and you’re okay. I love you anyway. The world needs more people like my friend and her husband who welcomed both of my daughters – and their challenging behaviours – equally, unafraid and with joy in their hearts.

To be blunt, what the world needs more of is people who aren’t afraid to mingle with kids with disabilities; who aren’t afraid or hesitant to invite a child with Down syndrome into their homes and family lives. But it doesn’t stop there either. You can’t just invite someone over and think you are bringing them in. True hospitality, like true inclusion, is about meeting every guest’s needs.

I can honestly tell you there have been many times when I’ve felt it was so much easier to just stay home with Elyse than to try and bring her over to someone else’s home or go out in public, where others may not understand or be compassionate about her outbursts. Elyse can take a long time to warm up to a new place. At this age and stage, she has some challenging behaviours that accompany her discomfort in new situations or scenarios when her needs aren’t being met. Namely, she screams. Often, she screams the word “NO,” but it can also just be a burst of sound. Sometimes she screams in my face, or the person who happens to be closest to her. She may even give a little shove. This is her way of shutting down and protesting a situation she isn’t comfortable in or happy with. I understand this about her, and I’m doing my best to accept it as her parent and to help her work through situations that are upsetting to her. But I refuse to keep her home. Life must go on, yelling or no yelling, and she has to learn to deal with new situations, because life is full of them.

There are certain people who bring Elyse comfort. Namely, Elyse relies heavily on her daddy in times of stress; he is truly her rock.

I knew, then, heading into the unknown territory of a few days at a friend’s cottage without daddy for backup was risky business, emotionally speaking for Elyse and myself. If Elyse felt lost, I alone would have to guide her back, a process with which even as her mother, I have varying degrees of success. When Elyse is feeling misunderstood, her frustration manifests itself in an angry wail. The force of her anguished voice cuts through you like a physical assertion, and I feel every bit of her pain. While I’m becoming more understanding of Elyse’s emotional outbursts, she’s doing the best she can, I don’t expect other people to understand, though I hope they will. I wanted our cottage visit to go as smoothly as possible. I wanted to be able to enjoy the experience with both Elyse and Ariel, my eldest. And I of course wanted to have a great time with my friends and their families, too.

On our way to the cottage, Elyse fell asleep hard during our late-in-the-day car ride to the boat launch where we were to meet my friend for a short boat ride over to her place before bed. I slid a sweater and lifejacket over Elyse’s lifeless body and cradled her in my arms then hoisted her up into the boat. She woke up in a daze mid-lake, but thankfully remained calm. She asked for dinner when we arrived, we fed her some cereal and then it was off to bed without much of a hitch.

With no running water in the cottage, there was the new experience of the outhouse, which Elyse took to well. Perhaps a bit too well. More on that later. When I checked on her and Ariel before I went to bed, Elyse had ditched her single bed and crawled in next to her sister. To do so, she got down from her bed, then climbed over a railing, in the dark, to squeeze herself in on her sister’s single bunk, where she fully entwined herself with her sister. Poor Ariel looked rather cramped, and though she later complained not to let Elyse sleep like that again – nevertheless, the following bedtime she offered, “come over here and you can sleep with me again, Lysie.” The world needs more big sisters like Ariel.

After breakfast on day two, the real challenge began. Elyse became fixated on the outhouse. I must have taken her a dozen times. It was as though she didn’t know what else to do with herself. I managed to get her interested in swimming and we headed down to the water. With a gentle sandy beach and a girl who loves to swim, I thought the set up could not have been more perfect. I was wrong of course, completely wrong. Elyse was beside herself. She’d suddenly lost all willingness to venture out on her own. She didn’t want me to leave her side for one minute, which was fine, except she was clinging to my neck and screaming in my face. She didn’t want to get out, she didn’t want to stay in. I wasn’t getting it quite right. After a few minutes of her yelling, I dropped her off in the shallow water where I hoped she would calm down a bit, but she only panicked after me, calling for me, “mommy, mommy, mommy!”

What is it about desperation that so forcefully pushes you in the other direction?

My friends reassured me, and sent me out on a planned swim. I couldn’t understand why Elyse was being so clingy, we had just been swimming at my parent’s house the day before. I was doing my best to be patient with her, but it was hard not to feel annoyed. This wasn’t how this day was going to go. Two of my good friends arrived with their kids during another bout of Elyse’s screaming, and finally I gave up on trying to get her to swim, and despite further protests about getting out of the water, I swaddled her in a towel away from the crowd, sat her on my lap, and tried to ascertain what the heck was wrong. When she’s worked up, this isn’t easy. “Mommy, mommy, mommy, mommy” was all I got between sobs and wails. Mommy’s right here, I told her over and over before falling silent and simply gazing out at the view.

I find when Elyse gets worked up, sometimes the best thing for me to do is just shut up, and let her get it out. I try to lead by example by remaining quiet and calm – I don’t always succeed, but I know it’s important and that Elyse isn’t acting out because she wants to, she’s acting out because she’s trying to communicate something and she’s frustrated.

Being the creature of comfort that she is, I finally got the idea to pull out a few of her favourite books and bring them down to the dock. With my friends there, and Ariel swimming in the water with the other kids, I didn’t want Elyse to try and wander back up to the cottage…or the dreaded outhouse. The books worked like a charm. She was obviously overwhelmed by the new situation, and the number of people, and giving her a favourite pastime worked wonders. She calmed herself. Elyse knows very well what she needs. After that, we had a blast. I rarely had another issue or emotional outburst from her. Later that day she enjoyed a boat ride, a buggy ride, she played games with the other kids, we roasted marshmallows and had a fun story time before bed. She even worked up to swimming in the lake by herself without clinging on to my neck the next day. I stayed close by, but we enjoyed swimming together. There was no more frustration or panic. Elyse smiled her genuine smiles and laughed her infectious giggles.

While I worked through Elyse’s frustration, fears and outbursts, can you imagine what made the whole process easier? Let me fill you in on a little secret: it was the people around us. I didn’t feel judged by my friends as a terrible mom because my child was screaming. I didn’t feel judged when I took her to the outhouse for the umpteenth time because when she tells me she has to go, I take her. I didn’t feel judged when I missed my turn to do dishes, or didn’t quite prepare all of that dinner when it was my turn to do so because I was parenting a child who sometimes takes longer to do things. Instead what I felt was their love and support. They showed not one ounce of disapproval for any of my daughter’s behaviours, no matter how disruptive or socially unacceptable, they simply accepted her for who she is. They helped me by picking up the slack, by including both girls in every single activity where they showed the slightest bit of interest and offered to watch one or the other repeatedly. It felt like we were three parents looking after our combined four children, and I can tell you, when you’re the single parent in that triad, that feels pretty darn good.

So why tell you this? That my kid screamed in my face and that other parents, my friends, were cool about it? I have to tell you this because there are parents who would still turn away, look to another and roll their eyes at my daughter’s behaviour. There are parents who might hesitate to invite a family over who has a child with a disability because they’re afraid of the type of socially unacceptable behaviours I’ve described. There are parents who wouldn’t know how to help, though they’d want to, and so they’d rather just avoid the whole situation all together. There are parents who would be shocked, maybe even offended, by my daughter’s behaviour. And all I want to say is, invite us anyway, invite the kid with the disability to do things anyway, take a chance, anyway. My friends’ kids saw their parents display unconditional love, and I can think of no better life lesson to imitate than that.

My friend and her husband put my daughter’s needs as a child and person first without me having to say a word. Her need for dignity and respect, kindness and patience. They respected her timeline, and made it clear she was invited in with open arms. They played with her, not afraid to make dragon sounds back. They asked me about her preferences, trying to ease transitions. Basically, they acted like the incredibly decent human beings that they are, extending the same level of hospitality to Elyse that they do to every guest, but understanding that the same does not always mean equal. That at times, Elyse needed a bit more attention than the other children did; though they all took their turns, and everyone got what they needed.

I am incredibly grateful to my friend and her husband for the amazing weekend, and for allowing both of my daughters the chance to grow in a space free of judgement, where they could truly be themselves. What the world needs more of is people who aren’t afraid to see into the fear and pain of another and reassure them it’s okay to be who they are. And mean it.

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.

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.

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.

She’s So Cute

There’s an interesting phenomenon that occurs when I walk around with my kids in public. There’s oohing and ahhing, and often a well-meaning comment. When I’m with Elyse, the comment is often, “Aww, she’s so cute.” I’ve received the same comment walking around with our toddler Penelope, but she’s more likely to receive a comment on her behaviour or her intellect, “She’s so smart!” or, “Look how good she is.” Ariel, our eldest, is less likely to elicit comments now that she’s getting older, other than what a great big sister she is.

While I appreciate the good intentions, it’s come to my attention that cute isn’t always a good thing. Cute can be downright condescending and dismissive. Reductive and infantilizing.

Two years ago, I was to go a talk with a good friend of mine to a group of college students. While we were standing in the hall waiting to give our presentation, a few young women happened to pass us by. In truth, we were lost, looking around, and waiting for my professor friend to come pick us up. It was at that moment a group of young women passed us, and one of them made a comment about my friend.

“Aww,” she said to her friend, “She’s so cute.”

My friend is 35 years old, and she has Down syndrome.

The young woman caught me in a moment of surprise. I said nothing. My friend looked unperturbed. I mentioned the incident to my professor friend who urged me to share the experience with the class, which I did. Did they see how wrong that was, how demeaning, to be labelled as “cute” by a complete stranger?

You could argue with me there are worse names to be called, and I won’t disagree with you, however there are ways to acknowledge someone that don’t rob them of their dignity; of their adult-ness. Do we take the needs and wants of someone who we label “cute” seriously? This is the same false reasoning and notion that kept/keeps women oppressed. Women were thought to be too delicate, too fragile. Best for them to stay home, and mind the children. A friend told me a man at her work apologized for swearing in front of her – same idea. I’m not saying I want people swearing at me, but why have two sets of standards? Would that woman have called another typical woman she didn’t know “cute”. Highly doubtful.

“Cute” is a stereotype. It’s a label that contributes to keeping the voice of those with Down syndrome small.

It’s true that at six years old my daughter is cute. I love to snuggle her. She has adorable glasses that slide down her nose, big eyes, and a bright smile. Her clothes are sometimes a titch big on her, and that’s endearing, and she has delicate features, small fingers, and a tiny pug nose. I get that she’s cute, but please let’s not let that define her; let’s not let that be a factor that holds her back, and tears her down. Let’s look beyond appearances, past cute, to building on potential and feelings of self-worth tied to intrinsic factors. Let’s acknowledge the person with a simple “hello,” instead of talking about them like they’re not even there.

Babies are cute. Let’s leave it at that.