Not Coronavirus: What? Syndrome

Author’s Note: I wrote this as mounting tensions over Covid-19 were rising.  I don’t want to appear insensitive or unaware of the current pandemic situation, but when life goes on – and regular life will go on – there will be other things to discuss and what follows is part of a dialogue from a conversation I’d like to have.  Grab a chair and lend me your ear.

Why is it that certain service providers and businesses act like people with disabilities don’t exist?

If my daughter with Down syndrome wants to go to camp, and she needs some support to be there, whose responsibility is it to arrange and pay for that support?  Without getting into the legalities, who do you think should have to do this?  What feels right to you?

Written into the Ontario Human Rights Code under The Ontario Human Rights Commission:

“…service providers have a legal duty to accommodate the needs of people with disabilities who are adversely affected by a requirement, rule or standard.  Accommodation is necessary to ensure that people with disabilities have equal opportunities, access and benefits.  Employment, housing, services and facilities should be designed inclusively and must be adapted to accommodate the needs of a person with a disability in a way that promotes integration and full participation.”

I am no legal expert, but when I read that, I think, ya, businesses are supposed to be designed in a way that anticipates the range of human existence.  The needs of people with Down syndrome should not be an afterthought.

I am no legal expert, and that is why I’m talking to a lawyer – who is – and will hopefully be able to give me a definitive answer to my camp question, regarding support, but I know what feels right and what doesn’t.  And being told I would have to pay for a support person to accompany my daughter to camp definitely doesn’t feel right; it feels like a slap to the face.  Like the person making the statement doesn’t know my daughter at all (because they don’t).  Like the person is making assumptions and generalizations without asking any questions (because they are).  Like society doesn’t care about inclusion.  Like inclusion is a myth.  There’s money I can access to pay for this support person, but then there will of course be less money for other more essential services, like speech therapy for example; but this is about more than money.  My question isn’t just about who pays.  The costs are much higher than that.

For a child with disabilities to be able to participate in a camp setting or community program, I view putting all of the onus on parents to provide that support as a lousy thing to do.  If you send your typical kid to rock climbing camp, you aren’t expected to bring your own ropes and harnesses, which is what it takes to be able to participate in rock climbing camp.  If we say we are an inclusive society, or if we truly want to be (which we should) then camps should hire extra staff to help meet the needs of kids with varying abilities.  The best part of this approach is that every camper would benefit, and this my friends, is called ‘Universal Design’.

When I approach a new program for Elyse, I want to know what the business is doing on their end to accommodate my child, but I am also sure to ask what can I do?  I don’t mind meeting halfway; I view any setting between a child and a care provider as a partnership, which means both sides have responsibilities.  My responsibility is to help that setting get to know my child; their responsibility is to do the rest.  Elyse does need some degree of support; but it’s all in the way an organization goes about offering it (or not).

Here’s a great example of a partnership that worked.  Before the start of summer gymnastics camp, we signed Elyse up for a regular gymnastics class session so that she knew the staff, and they knew her.  We then enrolled her in that same gymnastics club’s summer camp during a week that was less busy, because we had that flexibility, and in return, the club matched Elyse with a coach whose style and personality jived.  The club was flexible in making sure Elyse’s needs were met without impacting the group dynamics or causing undue harm or hardship.  She did not need a one-on-one support person, but what she did need was a mature coach and a group effort and consensus to keep an extra eye on her.  The coaches did this because they are doing their very best to uphold the values of inclusion and the principles that when we support our most vulnerable and we are a community that looks after each other, then everyone benefits because everyone belongs.

Likewise, our community swim program has been phenomenal.  Year after year, I contact them in regard to registration and mention that Elyse has Down syndrome.  I then discuss Elyse’s specific needs, because – hello – not all people with Down syndrome are the same!  I explain her needs, am flexibly on timing and then Halton Hills recreational staff make sure Elyse either has one-on-one or that there is a volunteer extra staff available to help her in a group setting should she need it.  This has been at no extra cost to us.  This inclusive set up makes us feel welcome and valued in our community.

But not every community program is so wonderful and not every camp knows Elyse and wants to help us out.  The consensus across Ontario is not always a ‘we’, but often still an ‘us vs. them’ mentality.  Friends of ours have mentioned they were turned away from daycares, for example, because their child has Down syndrome.  Why is this happening?  It shouldn’t be.

I now have the correct label for this phenomenon.  I wrote about discrimination in another recent blog post, but that’s not exactly what this is.  The proper term is ‘ableism’ and ‘ableist attitudes’.

From the Ontario Human Rights Commission (OHRC):

“Ableism may be defined as a belief system, analogous to racism, sexism or ageism, that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, or of less inherent value than others.  Ableism may be conscious or unconscious, and may be embedded in institutions, systems or the broader culture of a society.  It can limit the opportunities of persons with disabilities and reduce their inclusion in the life of their communities.”

This, all of this, yes.  Unfortunately, though steps have been taken to try and help bridge the gap, there exists a chasm between the abled and the disabled; the gaping hole that remains is in our attitudes towards those with disabilities.  Sure, throw some money at us – the families who have children with disabilities – we will take it, but it is outdated attitudes and stereotypes that are weighing on us heavily and truly holding our children back.

Expectations, and the expectations we hold for individuals, matter.  There is a slew of research on the impacts of our expectations in regard to outcome and performance, but what you need to know is this:  when we believe that someone can do better, they do better.  When we set our expectations high, individuals tend to perform better.  When we set people with Down syndrome and their families up for success, by putting supports in place that do not cause undue hardship to families rather than just worrying about businesses, then society wins.

Do I want to see a business collapse under the weight of supporting my child?  No.  But that is so far from the case, regardless.  Do I want to see a service, such as a camp, act surprised when I come knocking at their door with my child with Down syndrome?  1 in 800 Canadians are born with Down syndrome – why should anyone be surprised?

Again, from the OHRC:

“Ableist attitudes are often based on the view that disability is an “anomaly to normalcy,” rather than an inherent and expected variation in the human condition.”

People with Down syndrome have always existed.  In every race, gender, socio-economic status and across time.  For those who haven’t already, it is time for businesses and service providers to wake up and plan for the diversity of the children who will arrive at their doorsteps.  Do not put undue hardship on families.

Maybe this is all too impersonal.  Too preachy and utopian.  I don’t think so.  I know we can do better.

And here’s why we should.

Emily and I are giving a talk in a school.  The kids absolutely love her and want to be around her.  Emily is a former Special Olympian rhythmic gymnast with a sparkle in her bright blue eyes and a wit to match.  After our talk is over, a kindergarten class fills the gym and the teacher pulls out a parachute.  While I’m busy chatting, Emily, without missing a beat, joins in with the Kindergartens, shaking and lifting the parachute much to their delight.

On our drive home, I ask her why she did that – joined in at the parachute.

“Because,” she said, “I like to do that, and it’s been a while.”

How many adults do the things they really want to do when it comes to play?  I aspire to be that person, but I don’t always succeed.

There are so many lessons to learn in the breadth of humanity.  We need to be bringing more people in, hearing what they have to say, rather than keeping people out and turning them away.  I have learned more from the experience of having my daughter Elyse than from any education a higher institution could provide.  Some things – love, for example – cannot be measured or quantified or taught.  Some things are mostly felt and there are certainly those individuals more equipped to teach us.

When it comes to supporting each other, building inclusive communities, and the attitudes that pervade, businesses and service providers shouldn’t be worrying about whether they’ve done enough to meet the status quo or minimum standards (though they should make sure they have done at least that) – but whether they can do more.

Misunderstandings, If You Will

Discrimination is shocking.  Like a slap to the face.  And I’ve only experienced it second hand.  Or maybe discrimination is too harsh a word.  Maybe ‘misunderstanding’ is the label I’m searching for in this context, but I don’t think so.

When it comes to my daughter Elyse, I have an overflowing jar of ‘meaning-wells’ on my shelf but somehow the more I receive, the less ‘well-meanings’ I seem to have.  With the sheer volume of superfluous good intentions, the point is lost, losing its effect, because good intentions and ‘meaning-wells’ mean nothing when you’re drowning in them and when what you actually need is someone to listen, take you seriously.  We are at risk of drowning in the well-meanings of others and losing Elyse at sea without careful vigilance.

How hard it is for parents who don’t have a child with Down syndrome to see, for anyone really outside of individuals with Down syndrome themselves and their family members to understand how people with Down syndrome are discriminated against on the basis of their diagnosis.  Let me share a story to illustrate what I mean.

Around the time Elyse turned three, was learning to walk, and we took the girls to Disney Land, Elyse learned the letters of the alphabet. Her speech was delayed, but she made sounds and enthusiastically yammered on, mostly nonsensically.  Yet, she could say her letters.

The year she turned three she attended an exceptional Montessori preschool that fostered life skills as well as academic pursuits.  The school focused specifically on letters and letter sounds.  Simultaneously, at home, from the time Elyse was in the womb, we have read to her.  In the NICU at the hospital, recovering from surgery as a newborn, she was read to.  The nurses too, would lean in for story time.  Sound has a way of curling around our insides like touch, and we aimed to heal our daughter’s wounds with our words.  Books, comprised of letters and their sounds, were Elyse’s salve.

At three, we allowed Elyse to use the sesame street app that teaches letters on an Ipad, which she was intensely interested in.

One day, when grandma and grandad were over, it was grandma who pointed out to me that she thought Elyse was labelling her letters.  I had an art easel out with letters printed on it, probably something I was doing to help Ariel, our eldest, who had yet to master the alphabet, for lack of interest.  “B, D, T” Elyse said clearly, pointing to each letter correctly, one at a time, though she could barely speak.  I was in shock!  Elyse, eighteen months younger, learned to label the letters of the alphabet before Ariel did.  Keep in mind, Ariel, her older sister, is bright and inquisitive and receives excellent grades in school.

Fast forward now to Junior Kindergarten.  Elyse is still three years old because her birthday is later in the year and she isn’t toilet-trained.  I know how she looks to the outside observer with her pull-ups and small stature.  Infantile comes to mind.  But there is so much going on, so much, that is not readily apparent because of her language delays.  Then add in the fact that we send her to French school.  Now she has to learn all of the letters again, in French.  Admittedly, this takes her a while, but by the end of JK, she’s mostly there and into SK, surely, she has solidified this knowledge she first latched onto so young.

Roll into grade one.  Learning her letters shows up on her Individual Education Plan (IEP) as an expectation.  I am adamant this be removed.  Should Elyse choose not to demonstrate this knowledge, it’s because she is bored of it, not because she doesn’t know it.  Her school is phenomenal.  They listen to my concerns and we work together to get the expectations for Elyse’s learning where they need to be.  Expectations are raised higher up, where they need to go.  Once changed, the expectations remain realistic.

Enter grade two, the grade she is currently in.  Letters are no longer on the school agenda, THANK GOD, but sounds are up there, as they should be.  As you might have predicted (or maybe not?), Elyse is obsessed with books.  She looks at books all day long in her spare time and we offer her an abundance in French and English.  She has an intense interest in examining each page, but she isn’t quite able to decipher those words yet.  She will likely learn to read holistically by decoding whole words by their shape, rather than how most kids are taught, which is using a phonetic approach, i.e. by sounding words out.  Of course, there is great value in Elyse learning her sounds and the plan is that she will come to reading by blending the two strategies (holistic and phonetic).  She can read certain repetitive short texts already, small sight words, it’s a matter of building on what she knows and where she is at.  The same as for any child.

If we were really to take genetics into account when it comes to Elyse learning her letters, then we should probably look to her parents.  I am a writer and I am a teacher who taught grade one students a second language and then taught those same students to read in that language.  Now I help adult writers with their words.  I read no less than one hundred books a year, and you can damn well bet that my kids are going to experience literacy to the fullest.  In addition to a litany of scientific papers, my husband has one book to his name, in the form of a PhD thesis.  Our kids have two devoted parents, actively involved in their children’s lives.  And don’t get me started on their incredible grandparents.

Would you doubt our children would learn their letters?

But there are unfair barriers to Elyse’s success.  Every new year is like a new beginning of convincing others of what Elyse can do.  We recently started a special reading program, and the therapist outlined goals.

On the third week of Elyse’s sessions, I arrive to find an alphabet chart out.

“What are you doing with that?” I ask cautiously.

“We’re working on her letters!”  Oh no, you’re not.

I quickly, calmly, explain Elyse is way past that.

The therapist then hands me a paper with four attainable learning goals for Elyse laid out.  These are the goals Elyse will be working on for the duration of the program.  The second goal reads, ‘To recognize ten letters.’

“No, absolutely not, not this one,” I point out immediately.

“You’re a woman who knows what she wants!” the therapist replies.

No, I’m a woman who knows what her daughter needs.

This therapist means well, I know they do, and Elyse loves them and I believe that they care and that they are good at their job.  I am so grateful for the work they do because our family benefits from the support.  But THANK goodness they were consulting me, and open to my suggestions/demands.  Elyse will not be subjected to ‘learning’ her letters again.

The feeling I’m left with from the experience (and this is not the first nor will it be the last time) is that learning outcomes, in many contexts, are too often being made based on assumptions, prejudices, discrimination – misunderstandings, if you will.  She has Down syndrome; she is Down syndrome, therefore she will only be able to do X, Y, and Z.  No, no, NO!!!  These folks mean well, but NO!  I share this story not to shame; the problem is a societal issue.

It’s time to raise the bar.  To assume competence, capability and intelligence.  Elyse’s preschool teacher, a woman I know who really saw her, used to say to me all the time, “She’s a smart cookie!”  And you know, she’s my kid, but I don’t care, I’ll say it anyway, she IS a smart cookie, and she deserves to be treated as such.  She deserves the same respect other students do, the same chances at inquiry, the same push to succeed and grow, all of the best efforts to get her to learn.  She does not deserve to relearn the alphabet.  Every. Single. Year.

In Elyse’s place, wouldn’t you be bored?  And how forgiving of misunderstandings would you be if it was your child?

 

 

Chiang Mai, Thailand: The Most Enchanting Experience of My Life

You know how there are those moments that can change everything in an instant? Often, this is in a bad context, but I believe just as strongly in the irrevocable flashes of good in our lives. The moments when the universe steps in and says look what is possible.

For me, these moments include the night Dan proposed under a starry sky of snowflakes, our wedding day, the birth of each of our children, and a handful of incredible experiences I’ve encountered through life and travel, many of them on this trip around the world. So far, Thailand has given me no less than two such amazing experiences. The first was visiting Elephant Nature Park, a sanctuary and place to encounter elephants in their natural environment. The second experience, that dazzled and amazed, can be summed up in three words: the lantern festival.

There are two festivals happening simultaneously during our time in Thailand. The name of the festival varies by region, but it is the same festival, essentially. Loy Krathong is characterized by releasing small boats into the water, called krathong, that are made from banana trees, decorative flowers and a lit candle. Loy Krathong was traditionally celebrated on November 11, but with tourist interest and attention, the festivities have ballooned to last several days (this year from November 8 to 12). The exact date also depends on the lunar calendar and the arrival of the full moon. In Buddism, releasing krathong is supposed to appease the Queen of the River, Kongka, and serve as an apology for taking her water and doing with it what we will. While Loy Krathong is celebrated across Thailand, specific to the region of Chiang Mai with its old city, is Yi Peng. As a member from the staff of our hotel explained to me,

“The North of Thailand we call Yi Peng. The people are called Yi Peng.”

While Yi Peng is the name of the festival of lights in the North, it also happens to be the birthplace of the tradition of releasing lanterns, called khomloy, into the air in Thailand, which now happens in other cities in Thailand as well. Khomloy are large lanterns, lit from the bottom like hot air balloons. You grasp the khomloy tight, and then when it reaches peak temperature and tugs away from your grasp, begging to be let go, you release it up into the air, along with all of your troubles and a wish for good things to come. This year, the mass release of the lanterns was slated to happen on November 11th and 12th mostly; and though the city of Chiang Mai tried to outlaw releasing khomloy within the old city limits for the first time, the Yi Peng were not dissuaded, I can assure you.

Releasing the lanterns carries great significance and is a symbolic act. As our hotel staff member explained,

“Your life now has a trouble, your wish make it better. Make a wish about the good things to come in your life, (release the lantern) make the bad things go away.”

Our accommodation was twenty-five minutes outside the city by car, and our hotel graciously organized a boat tour for its guests to be able to experience the simultaneous festivities, lights by sky and water, in the middle of it all. Of course, there are organized mass lantern releases, and you can pay $100 a ticket, but arguably the best place to see the lanterns and experience the sights and sounds is in the heart of the old city of Chiang Mai, by Narawat bridge. The cost to be in the old city is free, if you can fight your way in; the view priceless.

Our little boat crew of about twenty-five people took off downstream. We could see beautiful krathong floating in the water right from the start, from the shores of our hotel, but as we passed by several celebrations taking place further along the banks of the river, the array of accumulated lights along the water was dazzling. By boat, to reach the heart of the action, we had about an hour of drifting to do, but around each bend the anticipation and thrills only grew. We saw a few lanterns, khomloy, dancing high in the air in the distance, a harbinger of delights to come.

As we approached the city, we observed many people releasing khomloy into the air and krathong into the water, but it was the scene as we rounded the final bend that was the most spectacular. Thousands of illuminated lanterns, suspended in the air, moving in unison, rising. My eyes glowed from the sheer pleasure of the scene. And as we drew nearer, the lanterns only grew bigger, fireworks shooting off all around us, packed shores and bridges, bodies and lights everywhere. I could plainly see the scene from shore would have been too much for our little family. We would have been engulfed by the masses entirely. Even from the water, the scene was overwhelming. I was brimming with emotion, every one of my senses firing, lit up. The thought came to me, and without question I knew it to be true: this is the most enchanting experience of my life.

Our boat tour began at 8:00 p.m. – past our children’s regular bedtime. Despite her tiredness, Ariel remained engaged for quite a while; but when she deteriorates, she deteriorates fast. Penelope, bright-eyed, was eager for adventure and told me, “This is so cool!” as we approached the multitude of lights by boat. Elyse was able to take in the sights and sounds, but in a modified way. We needed to tune down the sensory experience for her so as she would not become too overwhelmed and shut down completely. The combination of a late night, being out in the dark, loud and abrupt sounds, bright lights, a moving open-air boat, and a foreign situation all spell disaster for our sensitive Elyse. So we did what we had to do – not what I would have liked to do – but what we had to do, and we brought earphones and an iPad to help keep Elyse calm. During what I would call the height of the chaos and beauty, while our boat was momentarily stationary, Elyse took off her earphones and came over beside me while I lowered a krathong on behalf of our family into the water, and that was a beautiful moment. She took part in her own way.

There were several families and children on the boat alongside us, which was nice. The look of wonder and excitement on their faces, on all of our faces. One French-speaking boy, who took a particular liking to Elyse, happened to be on board with his family. Earlier in the day by the pool, I had come down for a swim with Ariel and Penelope, while Elyse was upstairs still getting ready. The little boy came right over to me and asked,

“Où est celle qui a sept ans?” Where is your daughter who is seven years old? He was delighted when she joined us shortly thereafter.

After our evening boat ride ended, sometime after 10:00 p.m., each of us filled to the brim by the experience, but also exhausted from the day’s events, we traipsed through the lobby on the way back to our room, and I caught up with the little boy again. He handed me a candy. “Oh, thank you! Is this for me?” I asked.

He shook his head. “Oh, it’s for Penelope?” who was standing beside me.

He shook his head again.

“Non, c’est pour celle qui a sept ans.”

Elyse had already made her way upstairs, but I made sure to deliver the candy from her crush.

There are definitive moments and large sweeping gestures, grandiose scenes of lantern-lit skies that take your breath away and then there are the everyday kindnesses that make life so sweet and worthwhile, that make the heart glow from the inside out as bright as floating lanterns backlit against the night’s sky. I am grateful to have experienced both in one day. Life will never be the same.

Japan II: The Ice Cream Incident

I am currently 2,743 feet up in the air. The temperature is minus forty-five degrees Celsius, but I’m donning a sleeveless dress with black tights. We are on our way to Thailand and I am prepared for the thirty-five-degree heat. But I can’t leave Japan without a warm farewell, a sincere sayonara, and a further account of our experiences there.

We stayed in Japan for a total of eleven days, and spent time in Tokyo, Yamanashi (Mt. Fuji region), Hiroshima – including a day trip to Miyajima Island – Kyoto and Osaka. Our time in Kyoto and Osaka was admittedly short, about twenty-four hours each. How long does one need to stay in a place to get a sense of it? Not that long, it turns out.

While Tokyo was hit by a typhoon a few weeks before our arrival, the climate cooperated perfectly during our stay. The ongoing joke between Dan and I was him asking if we needed the winter coats I packed, as the thirteen degree overnight and brisk morning temperatures quickly rose to nineteen or twenty degrees during the day. You can’t say I wasn’t prepared.

Interestingly enough, we hardly needed any of our own clothes during our time in Japan, as we spent four days at a traditional ryokan (Japanese inn) where our attire was provided. From a laundry perspective, this was great news. The hotels we stayed at in the big cities also provided nightwear, aka pyjamas, but we opted for our more casual t-shirts and nightgowns versus the buttoned-up affair.

My impressions of Japan are a series of moments and small details: colourful paper cranes at the Children’s Peace Monument; matcha tea and gelatinous purple treats in the tea house of the rock garden at the ryokan, the sound of a bullet train whining past, like steel breaking the sound barrier; soaking naked in the onsen beside strangers on the roof and staring at Mount Fuji in awe.

Dan described Japan best with a simile. He said Japan is like an iPhone in that if you follow the system, not only do you get the most out of the experience, but it works, and it works well. If you try to deviate outside the norm, there is no flexibility, and you will spend a lot of time banging your head against the wall in frustration. We had our share of glitches in Japan. Nothing frightening or harmful, just the impracticalities of trying to operate under a different system. Of being an outsider.

Perhaps the most acute difficulty with trying to simultaneously figure out a new culture while living our lives was to also care for our children. I often advocate on children’s behalf promoting their ability to adapt to change more readily than adults – and this is true, to an extent. Children are also creatures of routine, and when those routines are significantly altered, chaos can ensue. Okay, in our case, no chaos ensued. Well maybe a little chaos.

The food was the most obvious deviation from our regular routines. Despite Japan’s international reputation as being one of the healthiest nations in the world, partly due to its intake of fresh fish, we struggled somewhat with our diets. In a pinch, Seven-Eleven proved to be a great take-out option, but the meals we procured weren’t necessarily complete or health-conscious. For example, for one of our last breakfasts, I grabbed a cooked hotdog in a bun, a few bananas, donuts (for Ariel, the picky eater), an orange juice, yogurt cups, hard boiled eggs, and an egg & ham sandwich with tomato (a very popular meal option found around the country). While the meal wasn’t un-healthy per se, it wasn’t exactly healthy either. At home, we try to limit our kids’ juice consumption, but in Japan, vending machines abound, we embraced it and tried to fill our kids up on juice more than once. To my surprise, we often found ourselves in restaurants serving udon noodles or ramen, that often also served fried chicken and rice. Those were the staple foods our family came to depend on (outside of our ryokan stay where we were fed like kings and queens). I previously wrote off western foods in Japan, but that’s just not true. There are more options in the bigger cities, you just have to know how to find them. Down the road from one of our Airbnb’s, we stumbled across a burger joint. Hamburgers and onion rings have never tasted so good, especially to Ariel who had been subsisting on dinner bowls of plain white rice.

On the eve of our departure, Dan and I finally said enough is enough and pointedly asked the hotel receptionist for a good place to get sushi.

“We can’t leave Japan without eating sushi!” Dan and I both reasoned, having eaten so little.

When I explained our desire for good sushi, the receptionist was resolute.

“Good sushi and cheap,” she promised me, pointing to a place close by on the map.

Well, we navigated the directions she gave us and found ourselves in a mall food court. Not exactly what we had in mind, but you can’t win them all. Much to my surprise, the food court sushi was sublime. We ordered seconds.

When we found ourselves in a pinch for food, and the kids were getting cranky, ice cream became the answer. Not only did we buy it for our kids en masse, but restaurant owners, those who took us under their wing, those who didn’t even sell ice cream, would give our kids their personal ice cream stash in an attempt to please them.

One afternoon, nearing the end of our Japan stay, we pushed our kids to their limits. They had reached a point of exhaustion for which there was no return. What happened next, I will fondly refer to as the ice cream incident. I am only able to detail the experience now, because we lived through it.

Dan and I rely on Ariel heavily to be the Big Sister, the mature one, the kid who gives us the least amount of grief. Whether this is fair to ask of an eight-year-old or not is debatable, but none-the-less, we have high expectations for her that include helping out, so when she shuts down, all hell breaks loose. On the day of the ice cream incident, Ariel lost her favourite pink sweatshirt. As it turns out, the sweatshirt got left behind on one of our shinkansen (bullet train) rides that day and with the sky overcast, a light drizzle falling, the air felt cooler. She was miserable and cold. Dan wisely refrained from making the winter coat joke. We had more than one long-sleeved shirt for Ariel, of course we did, but we had abandoned our luggage the day before and wouldn’t be procuring it back at the train station until later that day, so she was stuck with only a t-shirt – the first sore spot. Then, we happened to be visiting a “park”. When I say park in Japan, I mean a place where there is some interesting shrine or pagoda or monument. My kids assume playground. I have since learned – the hard way – to watch what I say. BE specific.

Ariel and the others anticipated “park”, aka “playground”. Instead there was a massive crowd and a whole lot of steps to walk up through beautiful, “boring”, wooden orange archways called Torii gates. Ariel was incensed. Elyse protested the crowds and was unsettled riding on Dan’s back in a carrier and Penelope refused her stroller, deciding instead to weave dangerously in and out of crowds of people, risking getting lost or injured. Her behaviour put me on edge, my mother instincts on high alert. Ariel protested her displeasure with her currently situation loudly, repeating the same complaints over and over, with a voice I’ve come to associate with her alter-ego, Exhausted Ariel. I should note, for posterity, that I also have an alter-ego we refer to as my “secretary”. I have the world’s worst secretary who absentmindedly speaks on my behalf, but doesn’t actually listen or pass on any messages or recall any important details of the exchange for real Adelle.

Exhausted, and now irate Ariel was in full swing. The difficulty in travelling as a family – if I were to put myself in the child’s position – is the inability to get away from each other for a break. Dan and I constantly have eyes on our kids, which is exhausting and draining for both sides. Nobody wants to be monitored constantly.

At one point in the steep walk, Ariel staged a showdown. This was it. She wasn’t going to walk any further. I coaxed her up to the top of the next set of steep stairs, at which point she accused me of grave lies, stating I had promised that would be the end of the hike. I had not – could not – make any such promise, having no idea where we were or where we were going beyond following the crowd. As a final straw, I had to implement one of the only respite techniques at my disposal to try and rally the troops – candy. I hate to say it, but with our kids getting whiny, candy has been a great way to either silence them at pivotal moments (think: Penelope bellowing Frozen’s Let It Go! at the top of her lungs in Hiroshima’s Peace Memorial Museum) or to try and tide over their hunger or displeasure in a given situation beyond our control. I hate that we have done this. We are not that parent, but then again, I guess we are. You do what you have to do. So, when a little further down the trail, hoping to regain regular Ariel and send Exhausted Ariel packing and I saw the ice cream stand, I offered my children ice cream.

I’d like to pause here to say that Dan and I have done our best to raise respectful, peaceful, grateful children. What follows is a shame and disgrace, but if I’m going to share our adventures, then I’m going to share them all.

There were two flavours of ice cream available for purchase: vanilla and green tea. In Japan, there are replicas of all the food out on display – very helpful – so right away, Elyse latched onto the idea of the green cone, pointing to it profusely, as did Penelope. Ariel, having a better grasp of the situation and her preferences, chose vanilla. So far, everyone is feeling good. Each girl knows she is getting what she asked for. Spirits are brightening at the prospect of ice cream. My plan is working.

Dan and I chose a hot pork bun and a milk tea latte with tapioca “pearls” to share, for the record, and that was the extent of the choices.

There was a small seating area carved out into the jungle for patrons of the small shop to sit with their ice cream. We took our places, and as the cones were prepared, a group of Spanish-speaking women joined us. They were grandmotherly and sought to make a connection with me, mother to mother, which I appreciated, but I was straining under the weight of my children’s needs.

In stark contrast to our children’s exhaustion and foul moods, was the chipper, helpful and industrious little girl working behind the counter taking our payment, counting out our change and serving our ice cream. She must have been the same age as Ariel, about eight.

I’ve tried to encourage my family to adopt a group mentality while traveling together. We do what is best for the group. As such, no one individual has true ownership over anything, if what is best for the group is to share.

The cones arrived, and predictably, ice cream can’t fix exhaustion, it can, however, apparently make things worse.

Elyse didn’t want the green ice cream cone she asked for. She fussed and complained loudly, letting out angry screams. This is a behaviour she engages in when she’s shutting down, frustrated and needing to be heard. Dan, in turn, lambasts me for letting her get what she wants because I should have known she wouldn’t really want the green one. His tiredness showing, having carried forty pounds of extra weight on his back for the last hour up hill, I wisely ignore his slight with a reproachful glance and turn my attention to Ariel’s cone. She will have to share. But Exhausted Ariel doesn’t share, she is understandably too intent on meeting her own needs. The Spanish-speaking women are impartial to Elyse’s screams; one woman says to me, “we’ve all been there before,” as I give her a weak smile in return. As the eternal optimist, even I can’t see this scenario getting better. In fact, it’s going to get a lot worse because now Ariel is complaining, LOUDLY, about having to share HER ice cream cone. She is beside herself. Her voice turns shrill and convalesces into an indiscernible whine. I’m cringing inside and out at the absurdity of my children arguing over ice cream. My cheeks burn at their privilege, at my ineptitude as their parent and embarrassment at the very publicized tantrum by two of my children, screaming at each other back and forth. The icing on the cake was not only could Ariel not bring herself to share any of her cone with her sister, but when Penelope’s cone became available, and Elyse was finally calming down to enjoy some of the last bites of the freed up cone, Ariel snatched it from her hand and Elyse wailed at the injustice. The Spanish-speaking women all sighed and turned away. As it turns out, we hadn’t all been here. I hated for my children – and admittedly myself – to be so exposed to the judgement of others for this subversive behaviour. To watch my children melting down in such a public forum. To add to my shame, as we were preparing to leave, the little girl who had served us the cones came out to offer our girls a cup of broken cones – as a sort of peace treaty. My girls were hardly in a state to show gratitude, but the Spanish-speaking women ate it up, with looks at me that conveyed, that’s how you parent.

I know sugar only makes things worse, but this proves it.

Dan and I packed up our kids, heads down, and continued on our way back down the mountain hoping not to run into anyone who had just witnessed our family catastrophe.

Not long after the ice cream incident, our kids made amends and were reunited in their shared pursuit of petting a shrine cat. Kids are good at forgetting and being in the moment. Dan squeezed my hand and shortly thereafter, we made our way out of the “park” and onwards to our accommodations, with no long-term ill-effects or family fallouts not reconciled. While there are challenging behaviours, I am definitely remembering to hug my kids close and enjoy our time together. Families that play together, stay together, but you have to expect a little rough housing every once in a while.

Ultimately, this story has a happy ending. Ariel’s pink sweatshirt was eventually returned to her, having been recovered from the train station’s lost and found and Exhausted Ariel was laid to rest. Elyse ate many other ice cream cones that she thoroughly enjoyed, none of which were green. Penelope stopped associating bad behaviour with candy, because I learned to disassociate the two, and Dan and I reconciled the tensions the best way adults know how, through more love, less talk. Japanese style.

And one more thing before I go. Did you know that in houses in Japan they don’t just have a shower, but an entire shower room? That it’s customary to remove shoes at the entrance of a home and wear slippers? That there are separate bathroom slippers? That hotels provide sleepwear? That several public bathrooms don’t have soap dispensers? That there are no trash cans anywhere, but it’s not dirty either? That in Hiroshima, you can’t book a taxi before 7:30 a.m.? That our family of five required two taxis with our luggage – and that taking the train or public transport is usually the best option to get around? That Osaka, the city of our departure, has a population almost equal to the size of Canada in its entirety?

That on our flight to Bangkok, we would be served ice cream. And that, predictably, while Dan was out at the bathroom, Ariel would ask the flight attendant for seconds – and seconds would come! I’m shaking my head. What I didn’t know, is that Dan had already given Ariel his ice cream cup. Thirds it is, and many more fun parenting moments ahead.

California: The Souls of Dinosaurs

Elyse wakes up at 4:13 a.m. It’s our first morning in San Francisco and we’re staying in a hotel room Dan booked on points.

Our free hotel room consists of two separate rooms, includes a full kitchen, and that morning we enjoy a complimentary hot breakfast. We swim in the “heated” sparkling pool upon our arrival. We are pleasantly surprised.

My husband graciously slides out of bed, checks on Elyse in the bathroom. There’s the pitter-patter of feet and two more sisters out of bed. I get out of bed to help but insist on keeping the lights out to try and hold onto the night. We’re all shuffling around in the dark.

The day before, on the first day of our ‘round the world trip, we arose shortly after 4 a.m. eastern time. We woke the girls from their peaceful slumbers – what felt like a violent act – and loaded them into the minivan. We ate a rushed breakfast past airport security then were delighted to find ourselves in row eighteen of the plane, the first row past business class with extra leg room. The girls were even gifted an activity bag as they boarded the plane containing earphones for the onboard TVs, a colouring book and a small foam game of exes and oes.

The first five hours of our flight from Toronto to California were smooth sailing. The girls settled happily into their seats, ensconcing themselves in ipad land, embracing permission long denied, finally granted, to go back to their beloved screens. Around the four-hour point of our flight, Dan and I insisted Elyse forfeit her screen to use the washroom on the plane. She was belligerent about the request but didn’t cause much of a scene. When we unstrapped her from her seat she flopped onto the floor down on her bottom. She insisted on being carried to the bathroom. Dan didn’t mind obliging, but we should have taken this as a sign. When the duo returned from the bathroom a second time, Elyse climbed into Dan’s lap and tumbled into sleep. Her sleepiness was atypical, but not unusual given the circumstances. When Elyse awoke an hour later, it was time for landing. Penelope was getting giddy and worked up by this point in the five hour and forty-five-minute flight and when disconnected from her screen, Ariel had been uncharacteristically scowly and cantankerous. As the plane commenced its descent, tempers flared. Ariel and Penelope, seated to my left, went after each other. There was catty poking and swatting, eye rolling and whining. In other words, typical childish behaviour from kids who haven’t had enough sleep.

Our plane touches down seamlessly and I look over across the aisle to see Elyse slouched down in her seat like a sack of potatoes. My two quarreling girls are settling, their cat fight giving way to the novelty of the moment – t’was but a scratch – when the words you never want to hear as a parent come barrelling out of my husband’s mouth, “Are you going to be sick? Elyse, are you going to be sick?” Elyse looks placid, pale. Like she might cry. She’s dry heaving and making that gagging sound kids make when they’re trying to throw up. Passengers are disembarking all around us. Thinking fast on his feet, Dan reaches for the activity bag, containing headphones and all, and Elyse vomits into it. As it turns out, the poor kid suffers from motion sickness. And so we arrived in San Fran with a splash!

We got our rental car sorted without problem, Elyse recovered nicely and we were swimming in the hotel pool feeling nice and relaxed by early afternoon, having gained three hours heading west. On our drive to dinner, not surprisingly, Penelope fell asleep and by 8 p.m, it’s safe to say, we were all knackered. Ariel and Penelope slept together and fell asleep in the exact position they first laid down in and Elyse took the pull-out, joining them in dreamland a few minutes later, with Dan and I not far behind them.

Why then, at 4:13 a.m., when our kids woke up in San Fran, did they seem so damn fresh?

By 5:15 a.m. I’ve given up on trying to get the girls to go back to sleep. Any pretense of getting them to rest has faded away, so I turn on a light and pull out their books. Dan has clamoured back into our bed and as I flop down beside him, I feel a deep-seated exhaustion, despite having gone to bed the night before at 8:30 p.m. My legs are lead, my head all foggy clouds, like the ones we flew through high in the air and the ones down below us enshrouding California hill tops.

“Why don’t the kids feel exhausted?” I bemoan to my bedside partner.

“because they didn’t have to get themselves here.”

Elyse interrupts our sleep a few minutes later.

“I want breakfast.”

Our time in San Francisco did not disappoint. We visited the tall and majestic sequoia trees in Muir Woods National Park. We took a short boat ride to Alcatraz – “The Rock” – and took a stroll down to Pier 39 to gawk at sea lions and ride the merry-go-round. We ate clam chowder at Fisherman’s wharf and gazed out over the Pacific as the sun set in a dazzling array of purples, pinks and oranges. We crossed the Golden Gate bridge and stopped to take pictures. We experienced crime and big city problems. Homelessness. Bumper-to-bumper traffic. In the middle of the day, the car beside ours was broken into, smashed glass everywhere. There was a bomb threat nearby and several earthquakes an hour or so away. Nobody seemed perturbed. In comparison, I appreciate the relative calm and safety of our small town; the uneventfulness of small-town Ontario. Big city, big problems. Yet, San Francisco is not without its charms and character. Scooters and bikes and motorized skateboards abound. The giant sequoias and hearty palms, windswept vistas overlooking the ocean, and picturesque rows of stucco houses that go on and on in tiers packed into hillsides. Roads that disappear into the horizon. A shoreline with surfers, pelicans and sea lions; and who could forget that California sunshine. Even when it’s cold in San Fran, it isn’t really cold.

On our way into the city we came across miles and miles of white tombstones. An entire cemetery of them in the heart of the city. Ariel asked what we were seeing from the backseat. I told her it was a graveyard, and Dan added,
“That’s where soldiers are buried.”
“That’s where the souls of dinosaurs are buried!?” Ariel was incredulous.

California has class and soul. The city has grit, but its inhabitants are peppy, friendly. Sun-shiny. On one such vista overlooking the Golden Gate bridge and the endless city, Ariel and I stumbled across a blond in a leather jacket, chest heaving, one leg propped up on her Harley with her burley fiancé, hipster beard and all, pressed up behind her for a photo shoot. With the golden gate bridge in the background, the pacific and steep drop to our left, I thought, yeah, this is San Francisco.

Schooled

The new school year’s begun and we’re off and running! We’re on our way to…hopefully somewhere good. Because that’s the question we have to ask ourselves as parents and as teachers: where do we want our students and our children to go? All of these days spent at school, all of this education, but for what? As we approach our daughter Elyse’s IEP meeting (Individual Education Plan) I’ve been giving these questions a lot of thought. What kind of learners do I want my children to become? When their days in school are said and done, what are they going to walk away with? And what will be their contributions in return?

My children’s future is theirs to discover and build. It’s not for me to say what they will become or how exactly they will get there; it is only for me as their parent to give them every opportunity and to infuse their lives with love. All that I can ask of their schools is that they give my children the same: opportunity and support. Confidence.

We’ve reached a comfortable stage in Elyse’s education. She’s in grade two and this is her fourth year in the same school. They know her and they know our family. In so many measures this is a relief. There was a soiree at the girls’ school tonight and I easily slipped in with a group of teachers standing in a circle. I poked fun at myself for doing so, for fitting in so casually among them, and one of them kindly reminded me that I am one of them, or at least I used to be. There’s muscle memory involved when it comes to teaching. Your bones don’t forget. I took a step outside of the circle, back to where I belonged, and made my way anonymously into the auditory to sit with a sea of other parents, mere mortals.

I have to remind myself not to get too comfortable or to become complacent or content with the status quo. Essentially, I need to stand guard as the mother warrior that I am. I need to stand guard for the sake of my daughter’s education – we all do. The start of a new year is the start of new opportunity and chances to grow. I need to remain in the loop, as well as be a part of the loop that envelops my daughter’s education. While I can stand in the circle, I need to remember my place in it; my duty to my daughters. Hence my participation at curriculum night.

The principal cautioned us this was not ‘interview-the-teacher night’ or a time to ask how is my child doing? The first thing I asked was how is my child doing? My school-aged girls are in the exact same class this year. A split class and a first. We’re carrying this out as a sort of experiment – siblings together! Let’s see what happens! The idea bubbled forth with enthusiasm from Ariel and Elyse at the end of last year, so I figured why not? We put in the request and were graciously accommodated. Ariel and Elyse each have their own groups of friends. I’m no longer as worried that Ariel will try to take responsibility for Elyse or vice versa. The only difference is now Ariel comes in with these short reports about Elyse and her situation in class. There are both positives and negatives to this.

Positive. “Mom, Elyse gets to pick helpers each day to help her come inside and put her stuff away and everyone in the class puts their hand up.” Hmm…Elyse should be putting her own things away, I think, but this is an excellent point of discussion to follow up on at our next meeting. Also, I’m happy to hear of the love Elyse’s classmates show her. I spoke to three different parents at the information night who told me how pleased their son and or daughter was to be in Elyse’s class. Every parent needs to hear this.

Negative. “Mom, Elyse sits at a desk by herself so that she isn’t distracted or distracting others.” Hmm…again, this one made me think. How would I feel if I were made to sit alone? Is this a choice? Are there other options? Are there adequate opportunities to work with her peers in this scenario? Because working with her peers is crucial. I don’t want recess to become the only time Elyse is truly included with her classmates – and, thankfully, I know she is fully included and plays with her friends at recess time – but the bulk of the day happens in class. Ariel’s little bits of news, which I am in no way soliciting, by the way, are giving me some points for discussion with the school. New teacher, new year. Everyone has to make sure they’re on the same page.

I think the mistake we sometimes make as parents is ASSUMING teachers will know how we would want our child to be treated, for example, as a learner. Never assume. Teachers operate busy classrooms and they’re only human. They want the best for every student, and as the parent, you can help set the tone for what that may look like. Request meetings and have conversations. Every year that goes by, I never want to look back and have regrets about what we could have done differently with the school and Elyse’s education if only I’d expressed my thoughts. Learn to listen too, advice I am constantly working on.

I want to see my girls progressing, to keep progressing, even if that means every year that I will become the broken record, playing for Elyse, singing the same song over and over, “keep those expectations high!” Oh! And I see here you’ve written the expectations out for me on a few lovely sheets of paper creating a legal document known as an IEP or PEI in French. Excellent! I’m going to spend the time to read this over carefully now, so I can not only support Elyse in her learning goals at home, but also hold the school accountable for helping her reach these goals in the classroom. I should clarify that accountability isn’t about blame, it’s about making sure supports are in place to put goals into action. Assuming that I agree with the goals in the first place, because if I don’t then NOW, at the beginning of the year, is the time to SAY SOMETHING. When we question others we do so in a light that shows a respect for the work that has been done, for ourselves and for our child.

Creating the IEP is the role of the Special Education Resource Teacher (SERT) in conjunction with the teacher in our board, and likely in your board too (although the terminology could be different). I may be a teacher, but I never discount myself as Elyse’s parent. As the parent, you know your child best. Get in the schools and work with them to advocate for your child. Are they getting the supports they need? If not, why? And what is being done about it? What can you do to help at home?

In years where I’ve been more involved at the school and maintained contact with the teacher, and I can see what is happening in my child’s classroom – not even through physically being there, but by communication with the teacher and the occasional meeting, I have felt much better about their education and the answers to the above questions regarding where this is all leading. The goals are visible, plain as day, on the pages of the IEP.

Parents often feel helpless to change what is happening at school, and admittedly, I’ve been there too. But one strategy that really helps and works is to build relationships within the school (with teachers, the principal, support staff and other parents) and to offer to help at home. Show that you are willing to practice the skills the school is working on at home. And then do it. What this means is that you are a team. With 24 to 30 students plus, teachers are going to do what they can in the classroom, but they can’t do it alone. Your child’s education is a team effort.

While each student is but a drop in the ocean, one day they will become the waves that shift the tides. While I stand by my proclamations that academics are at the foundational core of my daughters’ educations: literacy and math skills, science and art fundamentals; perhaps the greatest gift they will walk away from school with is a strong sense of self-worth and the capacity to be kind and empathetic toward others. I want academics to be the pathway that leads them there. In other words, I want my children to leave school as well-rounded, academically oriented, good citizens. It takes an inclusive community of learners and teachers and parents to do that.

While every year we’re taking small steps toward this goal, we’re also starting again from the beginning in some respects; I hold hope and watch with joy as my girls continue to learn. This is the year Elyse is going to learn to read. I can feel it. It’s coming for her, and I’m so excited. I will be sharing this goal with the school, because what good will it do to keep it to myself? And you know what? Her teacher and her school want Elyse to learn to read, too. We are going to work on this goal together.

When I ask myself where my girls are going, I envision a river moving into a glimmering sea. They’re being pulled along by the current, but we as their parents and the teachers in their lives are there beside them on life rafts, keeping their heads afloat, providing guidance and knowledge to steer them in the right direction. Where are they going exactly? The answer to the question never wavers. Toward a bright future ahead.

Sharing My Bed

We share our beds with our lovers, of course, but also with our loves.

We lay there, our bodies overlapping and draped over one another like puppies. Tucked in my bed this way, my girls by my side keeping me warm, I begrudgingly get up to start my day. I can’t shake the morning chill seeping through the windows during these late summer days. I’d prefer to crawl back in with my litter. Never mind, adventure awaits.

Fall is creeping in as our family draws nearer to our departure. Like the birds, we are setting off, migrating to warmer climates.

We leave in thirty-five days; we will be gone for forty-five days. That is one thousand and eighty hours to fly, sleep, eat, roam, swim, hike and explore new countries. The math is staggering – how quickly the trip has arrived, how soon we depart, the sheer amount of time we will be gone – just astounding to me. And yet, I have planned it all. Do big events in life sneak up this way? Like they’re just another day – because they are – but at the same time, they’re not. Not at all. You blink, and it’s the day of your wedding. You blink again, and if you forget to be in the moment, the moment has passed you by. I try to stay awake. The immediacy and inevitability of our trip is almost as perplexing as the children sleeping in my bed. There is something unbelievable in making things happen.

Who let these children in? Well I did, of course. When Dan’s away, and half of our bed is empty, there’s always a child willing to fill the space. Elyse comes in during the wee hours of the morning, around four a.m., crawls in beside me, folds herself up and falls back asleep. She literally sleeps folded in half; her head tucked peacefully onto her lap.

At some point in the morning, I notice Elyse folded in half in her signature position but facing the foot of the bed with her head tucked underneath the sheet. Next, she slides sideways, wedging her little body between me and her big sister, legs pressed into her sister’s side, head weighing into the softness of my abdomen below the sharpness of my ribs. Normally, I can’t stand being touched when I’m trying to sleep, let alone laid on, but today I don’t mind. Elyse knows how to nestle herself in well and sleep pulls at me from every angle.

Next to me lays Ariel. She’s been having a rough patch with getting to sleep after we read the first Harry Potter book and then jumped into the second. Chamber of Secrets proved to be much too scary for her, as I suspected all along it might be based on my own recollection of reading the tale for a university Children’s Literature course, but Ariel wouldn’t let on until it was too late; she pressed me to continue reading, pushing the boundaries of her own fright too far until she was past return. Predictably, the nightmares arrived.

My girls seem to hold the imagery of books in their minds the way I do: the pictures come to life and feel quite real. Once you see an image (be it in your mind or elsewhere), you can’t un-see it, and the picture in Ariel’s head of he-who-cannot-be-named is haunting her dreams. She now readily admits Harry Potter is too scary for her, but she is also convinced the night terrors are caused by sleeping on the top bunk. When asked to elaborate on her fears, she explained that the curtains in her bedroom take on a form of their own in the dark that is not unlike a man who-cannot-be-named. Logic will not prevail; emotions are strong in that one. We won’t be reading Harry Potter again any time soon, but the damage is done.

Ariel’s first solution to the nightmare problem was to switch rooms and sleep with her baby sister. Penelope’s toddler bed having recently been removed and replaced with a queen-sized mattress coincided perfectly with her plan. I was immediately dismissive of the idea – dead-set against it – but the girls cajoled and eventually I caved, and that little adventure lasted all of three days. Unsurprisingly, both children’s sleep was getting disrupted.

Back in her own bed, I was able to convince Ariel that it wasn’t the physical bed or sleep space that was giving her nightmares, i.e. her top bunk or the curtains in her room, but the ideas in her head that needed to change.

“Try thinking of the fun you had with your friends today and focus only on things that make you happy.”

She humoured me with this idea for one night, then it was back to bed rebellion.

“Please mom, let me come sleep with you.” My response was resolute – no.

I tucked three bodies into their separate beds, and eventually, after standing sentinel in the hallway for a while, two children fell fast asleep. I climbed into my own bed and laid there reading Patti Callahan’s Becoming Mrs. Lewis. I know enough not to read scary stories. I expected to hear footsteps down a ladder and shortly thereafter I did. A familiar face hiding behind cropped wavy brown hair popped up in my doorway.

“Can I just sleep here, with you, for a minute?”

“Fine,” I eventually acquiesced. “One minute.”

A minute later I sent an obedient child back to her bed; Ariel’s head hung low. She drew out each step and dragged her feet reluctantly through the carpet.

I turned back to my book. Minutes passed. The clock showed half past nine. I could hear the crinkling of sheets, the tossing and turning, the not sleeping and other tell-tale signs of anxiety. I remembered crawling into bed with my own mom on nights my dad travelled for work. Oh, alright.

“Ariel. Ariel? You can come in here.” I called to her down the hall from my bedroom.

She was down the ladder and tucked in comfy under the sheets of my bed in two seconds flat, a broad grin stretched across her face. I continued to read, and eventually heard her breathing get slow and heavy, felt the weight of her body go slack beside me. She found her peace.

It wasn’t unusual when Elyse joined us early in the morning, but I was pleasantly surprised by how seamlessly she made a spot for herself. She pleated into the space between Ariel and I like a garment in a suitcase.

And that is how I found myself in the morning with two children in my bed and feeling a bit sorry for the third one left out of the pile. Not sorry enough to go wake her up, but sorry not to have every one of my loves tucked in tight beside me. Not to worry.

That is how I found myself ready for the day and dreaming of adventures to come, so soon, with all of my girls, our whole family by my side.

While waking up with two daughters in my bed is certainly not the norm, it was oddly comforting homey scene in juxtaposition to the foreign-ness of the sleeping arrangements to come. Unbelievably so, this trip is happening.

Parenting to the Bone

You know the expressions “weary to the bone” or “bone-tired”? At a particularly low moment, standing in my kitchen, listening to my kids fighting, I thought to myself, parenting can be like that. What I mean is: as the parent, you are stretched to your limit, past your limit; every personal boundary has been breached and you are sucked dry by your children and their incessant needs. I’m labelling these moments of utter exhaustion as bone parenting as that was the term that floating into my mind, standing in the kitchen, on the brink of experiencing such a moment.

Have you read the illustrated children’s book Have You Filled a Bucket Today? My kids loved that book for a long time, and it was read to them over and over. Filling a bucket boils down to acts of kindness and love. Bone parenting is the opposite of filling someone’s bucket. Bone parenting is the well gone dry. In our home, bone parenting occurs most frequently in the absence of one parent.

Maybe your home-life scenario looks like mine, and you have a spouse who travels frequently for work. Your moment of depletion arrives mid-week, when you’re alone, but not at 11 p.m. when the first child cries out in the night, or at 1:30 a.m. when the dog barks to be let out after the thunderstorm passes that kept everyone awake; those aren’t the moments that break you. That’s just regular life. Parenting at its purest. Expecting the unexpected. No, the bone parenting moment happens the next morning after the 4 a.m. something-happened-but-you-can’t-remember-what, and the 5:15 a.m. wake-up of the first and subsequently the second and third child, and nobody is going back to bed after the late bedtime, and now it’s quarter to six in the morning and you just want to soak in those last fifteen minutes before you really should get up. But those moments are ruined. Stolen. There’s a child creeping around and you’re worried someone’s going to pee on the floor. Now all the children are in your bed, your peaceful haven no more, and you’re wide awake. Your morning ritual is five solitary minutes to quickly check your phone. Weather. Email. Socials. Quick check. This habitual wake-up routine means so much to you. Such a simple thing. Taken. Two children are quarreling next to you. On top of you. This does not bode well for the start of a day.

You’re up! Because you have to be and because you’re the only one. The three children mope around, groggy and cantankerous. The big one’s been sleeping with the little one and that should never happen. Sleep schedules have been disturbed; the least of which being yours.

Then breakfast isn’t on the table quick enough, and not that shirt! And, No! I don’t want to brush my hair! I don’t have to go potty! And whine, whine, whine. A tussle in the family room over a blanket at 6:30 a.m. – good heavens! You’re waiting for one of them to drop a bucket back in the well, but they just keep emptying and emptying until you’re bone-dry.

But this day, it’s as if, at the moment I’ve been emptied out, my children have an internal radar for detecting my need for a reprieve; they understand intuitively that I cannot run on empty. That I will die of thirst. Mom’s getting low. Sure, sometimes they’ll push me further, to the point that I erupt (my issue, not theirs), but not today. Today, all three children are finally, somehow, magically dressed. Elyse is brushing out her hair and eating her bagel. Penelope is wearing her pull-up and sitting on the couch reading books. Ariel takes the dog out for a walk down the street like I asked her to. The well begins to refill and I can breathe again. I can have compassion for my tired little munchkins. I can finish making their breakfasts and lunches and packing their bags. I can make sure they have every little thing they need, including hugs, and then, somehow, we can manage to arrive at school ten minutes early.

Bone parenting moments aren’t really about what your kids are doing – be it smashing each other over the head with hockey sticks or doing a potty squat in the corner on the carpet in their room (or worse, your room) – it’s how you as the parent are feeling on the inside and how you choose to react – or not – in these trying situations.

Here are my survival strategies for when the going gets tough and I’m an inch away from parenting to the bone. Here’s how to fill up when water levels drop:

Crank the Tunes. Generally, if I’m feeling a bit blah with the kids, it’s because our house is too quiet. A travelling spouse means a lack of adult conversation if you’re home most of the day like I am. I like to fill the empty banter space with music. Kids and adults alike love music. People love music. Dan and I have moulded our kids’ musical tastes which range from Hip Hoppy Flow Rider to Top 40 Beyoncé, to musical soundtracks like Phantom of the Opera, Les Mis, The Lion King and Momma Mia. I put on music I want to listen to and blast it, which often puts all of us in a better mood. Water levels rise.

Get Silly. Listening to music can lead to silliness, but so can good ol’ plain silliness. Tag. A protruding tongue. Being silly with my kids helps to keep the mood light, even when I’m feeling overwhelmed by tasks. For example, yesterday before dinner, I was running through my house showing my kids how to do a hurdle before a tumbling line. I was doing poorly-executed split jumps and lifting my kids high up in the air and dropping their little noggins down close to the floor. They loved it.

Get In Touch. Getting physical and being playful with young children is essential to their wellbeing. Rough housing. Hugs, kisses, snuggles. We all need to be held. Some of the worst freak-outs I’ve experienced have been diffused with a simple hug. Without having to say a word, just being there with open arms. Even a gentle pat on the leg, when timed correctly, can console or even put a child to sleep. Our inclination as adults is to solve problems by talking them out and sometimes that works and is necessary, but as a mom, I swear by hugging. Hugs lower adult stress, too.

Get out for a run. If you have the luxury of a gym membership with child care or a treadmill in your home – use it! If the kids are in daycare or school, even better. The single greatest thing I do for my own mental health is to get out for a run. Running fills my bucket every time. Don’t have those options? Exchange babysitting with a neighbour. Then get out there and find your peace, swim in it. Running is the equivalent of my mind plunging into a lake. Refreshing and invigorating. If this is all crazy talk to you, strut your stuff outdoors instead and take in some fresh air.

Embrace the suck. Losing a parenting partner temporarily is going to hurt, but even more so if you think it is. Whaaat? See what I did there? Our expectations greatly impact our behaviour (there’ve been studies). I’ve been working on loosening my expectations of myself and what I can reasonably accomplish while Dan’s away and striving to be gentler on myself, especially when I’m having a bone parenting moment where all I want to do is scream. Maybe flee. Maybe scream while fleeing. Yep, that sounds about right.

If all else fails, Freak Out! This is a weird one, because it’s very much a cathartic-in-the-moment release, and I really wouldn’t recommend it as a habit, but sometimes you just need to freak out a little bit and show your kids that yes, you too are human. I’m not talking about ripping off doors and going ape shit, I’m talking about letting out a little shout of frustration and then explaining to your kids how you’re feeling and why you’re freaking out. If your kids are pissing you off, they deserve to know! How else are they going to change their behaviour if you don’t explain how it makes you feel? Tone and delivery matter here. Caution: if you overuse this strategy, it will completely lose its effect.

If you get really desperate, you can always throw the kids in the car and go for a drive to your favourite café with a drive-thru, or make a quick phone call to your favourite take-out place and get it delivered. We’ll call it food therapy. Desperate times call for desperate measures. Treat yourself.

Whatever your coping mechanisms as a parent, remember that at some point your absent spouse is coming back…they are coming back, aren’t they? And that if you look for it, your kids will probably do something cute that might just put a little splash back in that bucket. Messages of gratitude from the absence spouse certainly help. One such text came in from Dan saying how much he appreciates the work I do for our family in looking after our children while he’s away, ending with a note of high praise, “You’re the best.”

“You’re the best, too!” I texted back. “Now come home and take care of me.”

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.