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 businessesthen 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.

The Rise and The Fall

Our lives move in waves.  People come swimming in and out of them.  Projects ebb and flow.  Relationships crest and crash, smooth out and can eventually flatten completely if we let them, while life continues until the next dip, the following rise, the next encounter with the sway of the currents.

My life has taken some pretty interesting rises and falls, let me tell you.

I recently read a beautiful essay about how most stories are like sine waves – whether the telling begins in the dip or the crest, the end on a high or a low, and what happens in between those curves is up to the storyteller – but the basic form of our collective narrative is the rise and the fall.  Again and again.  Throughout history.  We rise and we fall, and we get back up and do it again.

I’m telling you this because I sat on a friend’s couch today.  I sat and I listened as she told me a part of her story.  I sat with a notebook on my lap and as she described a sliver of the events in her life, a pattern began to emerge and a sine wave took shape in my mind, which translated into my pen moving in waves along the page.  A story snake.  I saw clearly the rise and fall, the rise and the fall, her rise and her fall.  Over and over, again.  This woman is resilient beyond belief.  She struck me as heroic and she is brave, but I bet she wouldn’t want me to tell you that.  Because she is also every woman.  She is you and she is me.  Hers is a story I badly want to tell.  And the thing is, the thing is, her story has become part of my story.  Our stories are intertwining as we strive to build a relationship, a partnership, ride the waves together.  Our sine waves overlapping, our story snakes becoming friends, acquainting themselves with one another.  She wants me to be the teller of her story.  What happens next will either be the rise, or the fall.  This is the pattern, on repeat, of our lives.

And I couldn’t help but reflect on my own life, on my own story snake, as I drove away from her house and made my way to the library to get to work.  My life has similarly had its troughs and peaks, its highs and its lows, and I realized that at this moment, right now, TODAY, this is a high point.  And in reflecting, I see there are really only two truths to reaching that high, to loving your life and being happy and fulfilled.  If I had to simplify, yes, I’d say there are only two.  I know you know what they are in your heart but humour me.

  1. Do what you love.  2. Persevere.  That is it.

Life is hard, incredibly hard.  And UNFAIR.  So unfair.  You’ll never get what you deserve.  Unless you work for it.  And I’m not talking about I’m going to work on this thing I want for a day or two.  If you want something, and I mean really want something, you have to be in it for the long haul.  I’m not talking about I’m going to hope this happens.  A friend of mine posted this quotation from Antoine de Saint-Exupery the other day, and oh how it resonated within me,

“A goal without a plan is just a wish.”

I would add, a goal without a plan and the perseverance to see that plan through is just a wish.  Hold onto hope and faith.  They have their place.  But believe, most of all, believe in yourself.  Believe in your goals.  And make a plan.  Then push through it.  Ignore the naysayers, there will be plenty.  Ignore the naysayers in your own head.

I met with a friend the other day who once was a competitive swimmer and knew about my former life as a competitive gymnast.  “You must have body issues from being in gymnastics,” she surmised.  Au contraire.  My coaches never talked negatively about our young bodies, instead they marvelled and praised us for what our amazing bodies could do once we earned it.

I almost quit gymnastics at age nine – the year I became a competitive athlete.  This was a major low point for me.  I had to learn to do a back handspring (popularly referred to as a backflip).  If I didn’t do it, there would be no moving forward.  Go backwards to move forward, I see the irony.  I was terrified.  My mom took me out for lunch one school day after mysterious stomach aches had materialized.  She was rightfully worried about me.  She asked me frankly what I wanted to do about gymnastics, if I would continue.  There was no judgement, only love and support in her voice.  I made the decision then to push on.  This was a conscious decision and it was mine to make.

By the time I was twelve, I could do a roundoff back handspring with a layout full twist in the air.  Floor became my strongest event and I loved it.  That year my floor routine, with all its back (and front) flips, placed second in the province for my age and level.  Was it because I had been given the choice, didn’t give up, and then succeeded that I loved tumbling all-the-more?  Maybe.  Couldn’t hurt.

I didn’t learn to loath my body through gymnastics, I learned to respect it.  My body sent me soaring through the air, flipping around a bar high above the ground, turning backwards on a balance beam and dismounting off the side in a back tuck with a perfectly stuck landing.  My body felt strong and well and could do amazing things and I’ve never forgotten that feeling.  My stint as a competitive gymnast brought me confidence that I have carried with me throughout my entire life.

Gymnastics practices were grueling, and they were long.  I learned how to be tough.  How to survive five-hour training sessions that ended with runs outside on the burning gravel in the summer heat.  How to fall on my head and get back up and try again.  How to turn my body into one huge muscle, then how to make those muscles ache; the balance between strength and graceful beauty.  Gymnastics gave me grit.  I learned how to handle pain and stick it out, when it is worth it.  You don’t put yourself through hell for things that aren’t worth it.  Children, worth it.  Athletic pursuits, worth it.  Family and friends, worth it.  Writing a book, worth it.  Building a career, worth it.  Passion projects, worth it.

Some things that aren’t worth it: toxic friendships, money for the wrong reasons, a bad marriage, situations that invoke guilt, doing things out of shame or a feeling that you ‘have to’, letting others take advantage of you, crutches or quick-fixes, abusive partners…the list goes on.  Not all of these things I’ve experienced first-hand, but certainly I’ve been duped into my fair share of bad ideas.  I’ve lead myself down some not-so-good roads, to some not-so-good places.  But today’s my day.

Life is too short not to ride the high of the waves, and lately, I feel like I’ve been surfing.  Literally, I have been surfing, and that’s part of it, but there’s more.

There was a time I had a handful of blog posts and one measly article to my name.  The piece was the story of my daughter Elyse and my love for her.  The piece was about what people with Down syndrome can do if we believe they are capable.  I’m still telling that same story, my message has not changed, but my platform has grown, and so have I.  Elyse is set to be on the cover of a national magazine, with my article as the feature piece.  I did not see that coming, I did not prepare for that high, but maybe I did.  I have a book ready for publication, another on the way.  I’m set to start my MFA in creative writing this spring.  Everything I have done up to this point has brought me here.  Not one thing goes to waste, even those times I was duped, those perceived failures.  Those not-so-good roads to go down; I learned from them.

Was it my teenage years of being a competitive gymnast that gave me the strength and determination to write and keep on writing the past eight years until I would arrive at a book and a new career? Until my writing would appear in newspapers and magazines and that my message would be heard?  You tell me.

“You’re Type A,” my husband says, meaning it as a compliment, in that I am driven, competitive, ambitious, highly-organized and aware of time management (but as psychology is one of my majors, I need to point out Type As are also widely known as being impatient, aggressive, more stressed and a slew of other not-so-nice words, like psychopaths – all of which I reject completely).   But I’m not so sure that’s it.  I don’t think my life has arrived within me innately.  I’m a person who’s always had to work her ass off to get what she wants, and where she wants to go.  I have trained myself hard to ride those waves, and I have no doubt it was the training that got me to where I am today, and the many, many, many, many, MANY times my face has slammed down hard against the waves as I fell off my board.  But I’m in training for the long haul, and I’m not going to quit.  As far as I have come with my writing and my story, there are so many places left to go, pages to fill.  I want to make waves around the world.

My husband, who pokes fun at my psychology degree – but exclusively reads books about psychology – calls this attitude of mine a “growth mindset.”  His eyes get wet when he says it, like the psychological term holds great reverence, and I suppose it does.  There is something to be said for believing that with determination and hard work you’ll get there, no matter your innate abilities.

Whatever comes next, the rise or the fall, and historically speaking, I may be headed for the fall, I’m going to hold on tight and ride my board while this wave of good feelings and good fortune lasts.

Rise and fall.  Rise and fall.  Our chests heave.  In and out, like breath.  Our very lifeforce.  Breathe.

And when the swell returns; I’ll be ready to catch that next wave.

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?

 

 

Ode to Oreo: Loss, Grief and Down Syndrome

Preface: I wrote this piece for a new blogger friend across the country, Katie Jameson, who will be sharing it as a guest post on her site.  Katie is a photographer who writes beautifully about grief in the context of having lost a child, and I highly recommend you check out her site and work here.

I woke up one day, and for some reason decided that was the day I’d get a dog.  I didn’t grow up with any canine companions, after all, I was allergic, but I’d always wanted a dog.  I was twenty-ish years old with a nineteen-year-old boyfriend and maybe a bit compulsive.  We were second year university students with no business getting a dog together, a commitment that lasts over a dozen years.  We lasted two more months – the boyfriend and I, that is – while my relationship with Oreo lasted a lifetime.

Oreo, a fourteen-pound black and white Shih tzu, was my first baby and taste at real responsibility, though I owe my parents – Oreo’s grandparents – for plenty of babysitting.  Oreo and I saw each other through life’s ups and downs.  If she ran away, I would go find her; if I wanted to run away, she was a good reason to keep me home.  She was more than a furry friend.  Dogs have this way of looking into your soul and seeing who you really are.  Oreo saw me.

She was there when I found out my baby was going to be born with Down syndrome.  We had been through one pregnancy before, as I had one beautiful baby girl already.  I was twenty-eight years old and Down syndrome was an unexpected deviation from my first experience with pregnancy.  My baby’s prenatal diagnosis brought a heavy grief down on my shoulders, the weight of which was all I did not know.  Usually, if I cried, Oreo would ditch the spot next to me if we were sitting on the couch together in favour of a quiet corner of a bed.  Alternatively, she would curl in beside her best friend, Sumo, on a dog bed tucked to the side of our living room.  Sumo was a large black lab that came with my husband, they were a package deal.  Luckily, I had grown out of my allergies.  Did I mention my husband and I met walking our dogs?  While Oreo mostly avoided me when I was sad, there were a few times she stayed by my side, and the time period during which I found out my baby had Down syndrome was one of those times.  I remember Oreo standing her ground and looking deep into my eyes, slightly cocking her head.  Why are you crying?  She let me pet her, self-soothe.  Oreo saw who I was before our daughter Elyse came into my life, and she saw the person I grew into afterwards.  Oreo oversaw my education of what it means to be human and to embrace the human spirit in all its uniqueness.  She watched me grow as a person and become the mother of three lively girls, an advocate and a writer.  On her walks, Oreo held her head high, proud of our little family.

Universally loved and adored by children, Oreo was understanding of the abuses she received from our girls as babies and toddlers.  She never bit them when they grabbed and pulled on her tail or stepped on her or fell on top of her though she sometimes warned them with a sharp turn of her head, like a glaring mother, and would nip at them when they were old enough to know better.  Oreo loved to steal the kids’ food – that, I will never deny.  As my girls grew, they were eager to make Oreo perform tricks for treats.  I shared a similar enthusiasm to work with dogs as a child, and my affinity for animals has never waned.  Elyse, especially, who can show indifference toward many activities, giving way to her two boisterous sisters who are known to take over, never let a dog training session go by without being the trainer.  Even though Elyse was afraid that Oreo would put her paws up onto her chest (and Oreo would, to grab the treat, given the chance) six-year old Elyse never backed down from being included in Oreo’s care. Elyse clutched Oreo’s treat to her chest like she was feeding a lion then threw it wildly to the ground for Oreo to give chase.  This routine never failed to bring a smile to Elyse’s face and mine.  Oreo brought many children great happiness.  She brought me great happiness.

For years, Oreo was a regular staple on our walks to school.  She was somewhat of a celebrity with the neighbourhood kids.  My girls sometimes fought over who would get to hold her leash.  That was a responsibility Elyse seldom relinquished.  She loved walking Oreo and getting to hold that leash was a small taste of power and freedom so seldomly afforded to her.  The only catch about Elyse walking Oreo was that I’d have to keep an extra eye on them both.  While trained on her leash, Oreo would occasionally pull, but more so, when Elyse grew tired of the task, she would simply drop the leash with a casual all done.

For a while, my husband and I got into the bad habit of using our feet as barriers to shoo Oreo away from the kids’ food as our hands were often multi-tasking.  We stopped doing that when Elyse also adopted the habit but actually tried to kick Oreo.  Despite this aggression, and Oreo being a bit hyper and overbearing, and Elyse being a tiny bit frightened of her, Oreo and Elyse were buddies.  You could say they were tight.

 

How do you explain the death of a beloved pet to a child?  Worst still, how do you explain that you are going to be putting an animal to sleep?  Forever.  Time and tenses have never been Elyse’s strength, who I find at seven years old today is very much in the moment.  Elyse shines her light in other ways.

 

I woke up one day, and knew it was time to put Oreo to sleep.

At fourteen years old, Oreo’s health had been rapidly declining.  We left on a six-week family vacation around the world, where she stayed with my parents (thank you, yet again), and when we got back, though Oreo had been well cared for and received much love, there wasn’t much left of her, the dog she had once been.  While she bounced back upon being home in the week or two following our return, she couldn’t find her rhythm or ward off the effects of old age, including incontinency.  She was frequently confused and shivering.  The worst was the sound she made at bedtime as she paced, looking lost, from room to room.  She whimpered and moaned and there was no consoling her.  Oreo’s cries were heart-wrenching.  Of course, we took her to the vet, but there isn’t much they can do for an aging animal, except bring them pain relief through drugs.  We did that, but still, Oreo was in pain.

I woke up and took Oreo for a decent walk on the last full day of her life.  And after that walk, I knew.  When I stopped moving, Oreo paced around me in circles.  All she had done day after day was pace herself until complete and utter exhaustion.  She would collapse into an uneasy sleep for a few hours then begin her pacing again.  She was in pain and I knew it was time to let her go.  She’d had a full life.

I tried my best to prepare the children for what we would do the next day.  I tried to tell Elyse that her buddy would be gone, while also trying to console myself, but Elyse just sat on her bed with her book gripped tightly in both hands, eyes fixed to the page.

I didn’t want to put any pressure on the girls to feel or act a certain way toward death.  I wanted them to come to terms with their own emotions of the experience.  My husband and I decided the girls would come to the veterinary office and have the chance to say goodbye, but then I would stay in the room alone with Oreo while she received the injection to put her to sleep.

The morning of our final goodbye, tears glistened down my cheeks.  My toddler pointed out that mommy was sad, while my eight-year-old noted “that’s because Oreo is going to die today,” but Elyse for her part showed no awareness of what was to come.  She stayed upstairs in her room, reading her books.  That is until we arrived inside the veterinary office.

With the fragile and fraying Oreo in my arms, our family was ushered to a comfortable back room.  While the girls were somewhat hyper in the car ride over, they sensed the magnitude and solemnity of the moment at hand now.

My husband gently reiterated to the girls, now in context, “it’s time to say goodbye to Oreo girls.”  They each took a turn caressing Oreo and stroking her softly, but it was Elyse’s reaction that will forever stand out in my mind because I thought she didn’t understand.

“We’re saying goodbye to Oreo,” Elyse repeated in a whisper.  Then she pat Oreo ever so gently and leaned in for one last hug and kiss.  “Goodbye, Oreo.”  She had compassion and love in her voice.  Elyse had been listening the whole time.  She understood and she directed the full force of her love unto her dog.

In the immediate aftermath of the experience, my youngest had a hard time processing our family’s loss, choosing to view Oreo’s absence as temporary, perhaps – “Oreo is at the vet’s”, while my oldest contemplated the reality, “We put Oreo to sleep and that means she’s dead.”  Elyse seemed to grieve the loss of our pet the most readily.

Two weeks after we put Oreo to sleep, Elyse said, “Oreo is sad.  We had to put Oreo to sleep and say byebye.”  That Oreo was sad clearly made Elyse sad and she remembered that pain.  Grief is never a straight line, is it?  Even when it comes to our pets.  I gave her a hug, and we reminisced about the good ol’ days with Oreo.

One day, I will wake up again, and it will be time for our family to bring home a new dog.  This dog will exasperate us, undoubtedly, as well as bring us great joy and happiness, as Oreo so often did.  I won’t be surprised, if when we do decide to get a dog, Elyse is the one to bring Oreo up.  I know with certainty that Oreo is a dog none of us will soon forget.

R.I.P. Oreo

 

Summer 2005 – Sunday, December 29th, 2019

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.

Guest Post: Down syndrome and The Dentist, How to Prepare For Your Child’s First Visit by Dr. Greg Grillo

Editor’s Note: Dr. Greg Grillo reached out with a desire to share dental information in support of Canadian Down Syndrome Week.  The words and opinions expressed are his own and that of his team.  Please visit dentably.com for more information.  

Down Syndrome and The Dentist, How to Prepare For Your Child’s First Visit 

The first trip to the dentist can be a scary and stressful experience for any child, and that’s even truer for those with Down syndrome. Preparing for the first visit is key to making sure it is successful, and helps set the tone for future visits. I’ve been practicing dentistry for over 17 years, and have seen children from all walks of life through their first appointment. Let’s look at what to expect on that first appointment, and how you can help make sure it goes as smooth as possible.

Many Different Stimuli

One of the biggest issues for children with Down syndrome on their first dental visit is the large amount of stimuli. This ranges from visual things such as bright lights to loud noises like drills and cleaning tools. These all can be a bit overwhelming, so it’s important to prepare for them ahead of time.

Things like sunglasses or earplugs are both ideas for mitigating some of these stimuli. You know your child better than anyone else, so think about what types of things might be triggers for them while at the dentist. Then, bring any concerns to the dentist, and they can help make sure your child’s appointment is pleasant.

You can also prepare with things like video at home. Showing your child the process in a more comfortable environment can help prepare them for the real thing later on.

Meeting New People

Another big part of visiting the dentist is meeting new people. This obviously includes the dentist, but you’ll also meet the hygienist, the receptionist, and maybe even other patients. That’s potentially a lot of new people in one day.

If this is something that might be a concern for you and your child try setting up a desensitization appointment ahead of time. Spending a few minutes meeting the staff before the appointment can help make the actual appointment day easier. It also helps your child meet new people during a time where they are not already nervous about the cleaning to come.

Planning For The Future

While the first appointment might be stressful, it’s important to think about the future as dental care is a lifelong activity. You’ll want to set up an appointment and cleaning every 6 months for your child, so you’ll be going back many times.

Help them understand this, and the importance of going to the dentist for a lifelong healthy mouth. One thing that can help is working with the same staff and dentist on every subsequent visit. This can help them get familiar with who they’re working with, and also mitigate some of the apprehension of meeting new people each time.

The first visit is always a bit tense, but with proper planning you can help make sure it goes great. Dental care is a lifelong habit, so building that expectation young and helping your child understand that is key to helping them maintain their dental health. As always, if you have any concerns always talk to your dentist; they’re here to help and never want a child to miss out on receiving the proper dental care they deserve.

Dr. Greg Grillo has been a practicing dentist in Washington State for more than 17 years. After studying at the University of Washington, Dr. Grillo received a bachelor’s degree with honors before attending the School of Dentistry on the same campus.


Dr. Grillo is committed to caring for families and educating his patients about the health benefits that come with a good oral hygiene routine. This is especially true for families that have children with autism, Down syndrome and other needs. As a valuable member of the Dentably team, Dr. Grillo is able to share his expertise with you to make your next appointment at the dentist a comfortable experience.

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.

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.