There’s a lot of excitement this week for the announcement of new Gerber baby. Apparently, each year, the Gerber company (baby food and baby products) chooses a baby as its poster child, and this year, the baby happens to have Down Syndrome.

I had conflicted feelings when I saw the news articles and the various posts within social media. I don’t like disability being cast in the role of emotional inspiration. (See Stella Young's Ted Talk.) When social media and other media forms promote the Gerber baby with Down Syndrome being so cute and so adorable, I wonder if we are measuring acceptance with appearance. Maybe this is a result of my cynical side creeping in, being a mom to two children with exceptional needs who are starting to garner more awkward stares than gushes in public.

I listened in to CBC’s the Current this morning and heard the words of freelance journalist David Perry from MN who offered some caution with all the excitement, “Although the Gerber baby is cute, I am very skeptical that it is a particularly significant moment in the long journey towards acceptance for people with Down Syndrome and inclusion for people with Down Syndrome or people with disabilities more generally.”  He was speaking specific to the idea of whether or not the Gerber baby choice will impact decisions made regarding the genetic testing of a baby pre-birth.

Fascinating comment.  Click here to hear more.

I love it that more businesses are considering ways to visually express diversity and inclusion. Changing the Face of Beauty is a great organization that encourages the authenticity and accurate representation of our population.  When major companies such as Target and Nordstrom show people with disabilities in their advertisements, they help to positively support the ever expanding social definition of normal.

My hope is that the Gerber baby will inspire conversations beyond pureed veggies and challenge strategic plans in the boardrooms. I hope Gerber's decision will feed (ha!) into the idea of someone with a disability being more familiar than freakish. 

Wouldn’t it be awesome for the next company to take on similar visual presentation - and combine it with long-term sustainable impact? Canadian Tire has taken this idea seriously with their Jumpstart Community Accessibility Grants that help create or renovate spaces so all children can play.

So, Gerber… what’s your next step? I'm looking forward to this conversation.



 

 



 

For One Who Is Exhausted, a Blessing

BY JOHN O'DONOHUE

When the rhythm of the heart becomes hectic,
Time takes on the strain until it breaks;
Then all the unattended stress falls in
On the mind like an endless, increasing weight.

The light in the mind becomes dim.
Things you could take in your stride before
Now become laborsome events of will.

Weariness invades your spirit.
Gravity begins falling inside you,
Dragging down every bone.

The tide you never valued has gone out.
And you are marooned on unsure ground.
Something within you has closed down;
And you cannot push yourself back to life.

You have been forced to enter empty time.
The desire that drove you has relinquished.
There is nothing else to do now but rest
And patiently learn to receive the self
You have forsaken in the race of days.

At first your thinking will darken
And sadness take over like listless weather.
The flow of unwept tears will frighten you.

You have traveled too fast over false ground;
Now your soul has come to take you back.

Take refuge in your senses, open up
To all the small miracles you rushed through.

Become inclined to watch the way of rain
When it falls slow and free.

Imitate the habit of twilight,
Taking time to open the well of color
That fostered the brightness of day.

Draw alongside the silence of stone
Until its calmness can claim you.
Be excessively gentle with yourself.

Stay clear of those vexed in spirit.
Learn to linger around someone of ease
Who feels they have all the time in the world.

Gradually, you will return to yourself,
Having learned a new respect for your heart
And the joy that dwells far within slow time.

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from onbeing.org

                  same kid, seven years later (photo credit - Elma Regnerus and Emily Pot)    

Maybe it's because I'm turning 45 this year - and I always thought 45 was old. Maybe it's because I was once again asked by a sales clerk about using my senior discount with my purchases. Maybe it's because sometimes my phone is easier to read when I take my glasses off. Whatever the case, lately, I feel old.

(Disclaimer: This is not to say being senior isn't great. I love seniors; I'm related to a lot of great seniors. I am just not ready to be that official of a grown up.)

I remember my mother-in-law telling me she looked forward to growing up but getting old was hard. Our bodies sag, stretch, and weaken in all the wrong places. My mother-in-law was right, as most MILs are.

Last week, I watched (and now recommend) the CBC doc The Caregivers Club. It's stories from relatives caring for someone with dementia. There were many familiar experiences in that doc, as I could relate as a caregiver of Rachel and Janneke. 

Sometimes, I wonder how long I will have the stamina and strength to properly and safely care for my girls. I wonder what our life will look like a few years from now when our older two are more independent - and Rachel and Janneke are just as dependent. Admittedly, I am envious when I see my peers and their neurotypical families. 

When the body aches bring heart aches, laughter is a must. The other day, when I was mistaken for a senior, I was sent a clip from the usually-too-edgy-for-me-but-this-one-was-quite-funny Baroness Von Sketch show. Never mind the gulping of wine, it's the laughter over the clerk's attempt to explain the wrinkles on the face. My favourite part is when the clerk gestures with the hand, "You can see the journey."

here's to joy in the journey,


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The following previously published in Christian Courier

Happy New Year! For new CC readers, this column is an expression of our family’s experience with faith and disability. My husband Ralph and I have four daughters: Emily and Sophia are neurotypical teenagers, passionate about everything (except for maybe drying the dishes), Rachel is 11 years old, and Janneke is eight. Rachel and Janneke are considered medically fragile with complex care issues. Each day is a step forward into our new normal while reconciling our angst over this complicated life with God’s sovereign purpose and love. 

In their schools, Rachel and Janneke have individualized education plans (IEPs). The IEP goals, created or renewed each school year, are specific to the girls’ needs and tailored to their strengths and weaknesses. Figuring out what goals are possible and what goals are beyond their reach when no one really knows the extent of their capabilities is daunting. 

I reference those IEPs because it’s January, the time of year when many people are determined to make individualized goals (resolutions!) for the new year. The most common relate to health – including but not limited to fitness and weight loss. 

Falling short
January seems to hold much hope for these aspirations, but often January’s determination becomes March’s frustration becomes August’s surrender becomes late December’s return to resolve once again. Statistics suggest less than 10 percent of us actually achieve and hold those resolutions.

Often, resolutions convey what we believe to be ideal, whether we reach that goal or not. Not only does that ideal reflect how we see ourselves, it also filters into how we see others – and what we believe to be normal in our culture. 

What happens when we don’t fulfill our resolutions? Does that change how we see ourselves? Does it change how we see others? What are we communicating when we are forever (and in vain) striving for some ideal?

American writer Nicholas Carr references the less-than-authentic self within the context of social media. He writes, “We project an idealized version of the self, formed for social consumption, and the reflection we receive, continually updated, reveals how the image was actually interpreted by society. We . . . then adjust the projection in response to the reflection, in hopes of bringing the reflection closer to the projected ideal.” 

Ideal vs real
As a mom to two medically-fragile daughters and two neurotypical daughters, I am aware of what is projected as ideal developmental milestones. I’m also aware that when we view disability only through the lens of a medical model, we see disability as a problem that doesn’t meet milestones and has a preconceived trajectory requiring treatment. The disability needs to be fixed. 

I prefer the social model of disability that says limitations can also lead to possibilities. There are legitimate concerns, but therapy can support a new normal, acknowledging that often there is no “fix.” Understanding disability in a social context means that goals can be made and attained together because we don’t measure with an impossible ideal; we measure according to what is observed and what exists in the realm between possibilities and limitations for each unique person within the context of community.

I’m currently reading A Vulnerable Communion by Thomas Reynolds. One of the first phrases that caught my eye in his book was disability is a factor in the cult of normalcy. Humans can develop an excessive admiration for an ideal and for a standard of normal, isolating those who don’t fit from those who fit. 

“The basic argument of [his] book is this: Wholeness is not the product of self sufficiency or independence, but rather of the genuinely inclusive communion that results from sharing our humanity with one another in light of the grace of God. To exist as a finite creature is to be contingent and vulnerable. This means we are beings that face limitations and are capable of suffering from a range of impairments. There is a profound theological implication here. It is precisely such vulnerability that God embraces in Christ, entering fully into the frailty of the human condition, even unto a tragic death. Jesus is Emmanuel, God with us.”

Peace to you and yours for 2018.   

Hello, New Year.

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The year has started somewhat quietly for our family. We continue to maintain some kind of happy status quo with our health - which means we visit the doc, but we don’t stay over. Em and Soph have been down the NY hills a few times with skis and snowboard alongside Ralph, thanks to some crazy early snowfalls.

I suppose I could try to wax eloquence and create some wonderful resolutions for 2018.

I’m resolving to resolve later.

For now, I’m reading You are Not So Smart by David McRaney (https://youarenotsosmart.com/) - thanks, Keith Dow, for the suggestion.

The website refers to the book as a celebration of self delusion (!). I’ve yet to finish the book (or the website), but it has already made me wonder... So far, I’ve landed on three things:

The ideal: More than half of our new year’s resolutions will be about weight loss, diet and exercise.  What does that say about how we see ourselves - and what we believe to be ideal or normal?  How does our vision of the ideal shape how we see others - and how we treat others?

What we measure counts; what we snap (photograph) matters: It’s tempting to get pulled into the current of newsfeeds and post pictures of our food, family and fun every day. Like that old saying- if a tree falls in the forest and no one is around to hear it, does it make a sound?...

If we don’t take a picture, did it really happen?!

I think it goes without writing (but I’m writing it) that photos in our social media quickly influence our concept of the ideal (and our friends), both consciously and subconsciously. I didn’t realize how many things and trips and events I was missing until I joined Facebook.

You are enough: I’m sorry if you’ve already written this on a post-it and stuck it on your bathroom mirror. I’m not suggesting you take it down. I'm not referring to never measuring up; I'm wondering about how you are not enough on your own. You see, we need each other.

As much as more money or more stuff or self-help might seem to fix a lot of our problems, our perspective on said problems changes when we can (or get to) share the load. Crappy things happen every day to a lot of people.  Truth: We are able to engineer resilience through connections - which inspires hope.  And I’m not talking about adding more Facebook friends; this is about finding or being one of a few people that knows when to just be and when to bring a lasagna.  Do you have a kvetching circle? Can you be in someone’s kvetching circle?

This year, among many things, there is a provincial election. As a mom to four kids, two neurotypical teenagers and two complex care kids, I am watching to see what attention is given in the election platforms to our kids. Equity in services for paediatric rehab and mental health services is important to me.

I know the government cannot successfully create a you-must-care-about-others mandate, but it can create policies that empower and influence communities to care about kids and families, however they grow and wherever they go. More on that another time. 

So,

Whether you are growing older, slimmer, wider, taller, or wiser, let’s resolve:  To say tell me more instead of I know how you feel. To say help me understand instead of the same happened to my great-aunt Martha. To say can we talk? instead of clicking *sad face emoji*.

My hope for 2018? That we don’t let the ideal distract us from accepting what is real. That our new yet-to-be-experienced memories outnumber our Facebook and Instagram photos. That we work harder to connect with each other, seeking out those on the periphery of “normal” - and find common ground to stand on. I appreciate Rabbi Lord Jonathan Sacks’ words, “It’s the people not like us who make us grow.”

Last week, we tried a family picture. We actually took 30 with the self-timer -and yes, the number of photos outnumbers the number of minutes we thought this was fun to do.  What you see is about as good as we could get it. We had a tough time trying to get Luna to cooperate, and Rachel was as impressed as..well, she wasn’t impressed.

But, it’s us. And here’s to another year.

peace - to you and yours, spot


Because I forgot to say it last week: Merry Christmas.

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This was Sunday morning, in our church's main office. While the pastor expounded nearby within earshot, Janneke delighted in the light shining on her face, divided evenly through the wooden slats. 


Not how it’s supposed to be,

the chorus that rings consistently

in my mind and on my lips

when what was carefully planned….rips

and tears into pieces that feel scattered

 

until the chorus becomes the thread 

that somehow weaves hope in fear’s stead

and pulls the pieces into place -

while learning to be content with the mystery


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Janneke is in her fourth year at a Section 68 school authority, funded and legislated by the Ministry of Education. There are six of these schools in Ontario, affiliated with the local children's treatment centre, and students are selected through assessment and referral. The schools are not large in number; their focus is a specialized program that integrates education with therapy on a daily basis. It's a great place to be and grow.

Recently, I had a chance to visit Janneke in her classroom. The time frame I was given allowed me to observe Morning Meeting.  This is one of the first parts of their school day; it involves the students (that day, there were six) sitting in their wheelchairs in a semi-circle around the teacher. The EAs sit alongside or behind the students to support them throughout the meeting time. Much of the communication feedback is created through the recorded message button. The teacher will ask a question, and the student will activate the message with either their hand, arm or head. The message is pre-recorded by the staff to support the nonverbal response. For example, the teacher will say, "Good morning, Janneke." Janneke is invited to respond by pushing her message which might say "good morning" in response. 

While sitting alongside Janneke, I couldn't ignore the profound sense of awe and sorrow I was experiencing. I felt sad that we could not have that immediate feedback that we take for granted in verbal conversations, but at the same time, I was in awe of what was communicated without words. As the teacher worked with students on responding to roll call and welcoming by name, there were mischievous grins and impatient hands and stubborn wills.

Mischievous grins were seen when students took their time to activate their message button. Impatient hands were seen when students wanted to tell their message and move on into the next activity. Stubborn wills were seen when students (Janneke) refused to activate their message buttons. How typical. 

I wish these moments could be witnessed by more of us. Watching the staff interact patiently and lovingly with the students was a reminder to me to pause and be present. So often, we move quickly through our day, hurriedly offering a good morning to our colleagues, as we run by with our coffee. "Time is money, time is progress, time is fleeting, time is of the essence"...  but sometimes, our urge to rush can hinder sweet moments of joy.

peace.

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Dylan and Janneke with their teacher in morning meeting.

previously published in Christian Courier and reposted here:

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giving thanks

After the births of our two medically-fragile daughters, Rachel (2006) and Janneke (2009), our family tried to find a new rhythm of normalcy. In those first few years, juggling four little girls, two typically developing and two with severe disabilities, was complicated; the joy was often overshadowed by anxiety. I wanted to help our older daughters, Emily and Sophia, find a way to articulate how they felt about being big sisters to little sisters with special needs. Both girls were emerging readers and writers, so we started a family journal.

We would initiate the process by asking, “What makes you (insert emotion)?” Looking back now on those entries, it is both funny and fascinating to read the girls’ thoughts.

One particular thankful note stands out: "I like my sisters with special needs because they can’t walk around and grab stuff off my shelves". Spoken like a true sibling.

scripting our thanks

Now, it’s that time of year when Canadians and Americans celebrate Thanksgiving, and I think back to my childhood crafts, the “I am thankful for…” cards we made in school. It was so simple to sit and list things like mom, dad, my dog Buddy, and food.

As an adult, I probably spend more time asking and less time thanking, frustrated over the things or circumstances I’ve received but don’t appreciate. I do want to live thankfully, even when I am in a place not of my choosing, but it is not easy. Giving thanks seems tiresome when much of the day is spent giving up time, sleep, energy, and plans.  Yet, with the smallest details in my day, I want to see and be grateful for the threads in God’s tapestry of grace and mercy.

(This sounds poetic, the tapestry part. Maybe I’m trying too hard to dress up my gratitude? Maybe I ought to consider my kid’s perspective and be a bit more direct.)

lessons in thanksgiving

I am thankful I am needed. As much as Rachel and Janneke appear powerless, their dependency on me empowers me to do what I can to help them. I am also reminded of how I can’t do life on my own. When I clean up their bodies and dress them each day, I am discouraged they require so much care, but at the same time, I am conscious of how we need each other and ought to provide for each other. Caring for others and living in community is messy but necessary.

I am thankful to be introduced to many unique people through Rachel and Janneke. Over the years, our many appointments have introduced us to different care providers. We’ve met some strange people, like the specialist who said our girls would be like the Munchkins from the Wizard of Oz.  I’ve also met a doctor who cares so much for our girls that if I find myself washing my hands in the sink next to her in a public bathroom, she will lean against the hand dryer and start a conversation about the girls.

Having girls who don’t fit a well-known diagnosis or developmental pattern puts them (and our family as their advocate) on the periphery of normal. It’s in this space we’ve met others who also want to be welcomed and accepted. I am thankful for those sometimes awkward but incredible conversations in elevators and waiting rooms.

living gratefully

I don’t want to wrap up my gratitude with an orange harvest ribbon and sprinkle some pumpkin spice. I am learning that some of the most incredible growth in my heart and mind comes after some of the darkest and difficult feels-like-forever experiences. My hope is to see thankfulness as deeper feeling of appreciation for God’s handiwork, for the small things I didn’t ask for but need everyday, for the tough stuff that is life-changing, and the surprises that cultivate a greater perspective of community.

Wishing you a grace-filled season of gratitude.

spot

 

 

These days, I've been listening to The Current on CBC. I love listening to radio whenever I can - whether it's CBC or NPR, etc. Recently, The Current featured three episodes on the topic of students with special needs and Ontario's education systems. It's been fascinating, sad, challenging, and inspiring to hear parents and professionals share their stories. 

I think no one should have to do life alone.

I think we all ought to be able to belong to something - not to nothing. And those somethings ought to work together.

I think broken relationships lead to broken trust lead to broken systems lead to broken people.

“One of the marvelous things about community is that it enables us to welcome and help people in a way we couldn’t as individuals. When we pool our strength and share the work and responsibility, we can welcome many people, even those in deep distress, and perhaps help them find self-confidence and inner healing.” Jean Vanier

 

Tonight, I've been thinking about the feedback and stories from the CBC program. And I think about those who live with or care for children with invisible disabilities.

I've been told that I have it easier with my kids being in wheelchairs, that the chairs and visible abnormalities validate them as being disabled.

I understand the heart behind that comment. It is exhausting for the parent to advocate over and over for their child who "appears normal" but is dealing with sensory overload, complex brain development due to trauma, ADHD, autism, twice gifted ... the list is long.

I wonder if one of the hardest parts is feeling the unspoken vibe from other parents that their child's behaviour is due to insufficient parenting, that they feel judged based on their child's "outbursts." I wonder if one of the hardest parts comes from having to explain over and over that their child's behaviour is often an adaptation related to the disability, not an intentional choice to disobey. 

So here's a poem for tonight's thoughts: 

 

My Front Row Seat

          Why didn't you warn me there was something very wrong with

           your son? - kindergarten teacher

In Dad's tie, hair slicked, you stand taller

than fear, take centre stage, shoulder to shoulder

with boys you can name and girls

you may or may not have noticed

yet - your eighth grade teacher gives you the thumbs up

and voices from our past pile up inside me

(the worst case ... not able ... no reason to believe

... locked room where he'll be safe),

but thin words can't fill my mind

like your eyes meeting mine: 

you wink and say

your first line

-Angeline Schellenberg

The true measure of any society can be found in how it treats its more vulnerable members. M. Gandhi

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