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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.

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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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beLeaf it.

yes. the Toronto Maple Leafs popped into Niagara Children's Centre.

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Whether or not you think that's a big deal, it happened - and it seemed to be a big deal to those gathered at the Centre this afternoon, albeit more for the adults than the kids. 

Why is it a big deal when a well-known sports team or individual stops by a place like Niagara Children's Centre? There may be a few who roll their eyes and mutter something about a token photo op. 

Photo op or not, it is awesome to see attention brought to the Centre and the kids, attention that doesn't include medical teams or therapeutic intervention. This kind of attention speaks to a piece of normality that so many Centre parents wish to glimpse in their otherwise not-so-normal life. This kind of attention tugs on the jersey of the fan who doesn't usually think about disability or a children's treatment centre.

If you've ever heard a parent or family member speak about Niagara Children's Centre, many of us say the same thing: We never knew this place existed until we needed it. 

So when the Leafs come, it's a bit of a spotlight on this place for the rest of the community to see and consider supporting. Places like Niagara Children's Centre need community dollars alongside the allocated Ministry funds to help kids. The waitlists for services persist and the needs continue to grow. It's pretty cool that the Leafs are opening up their training sessions this weekend in exchange for donations to the Centre.  Go ahead and take some pictures.

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Janneke seemed indifferent to all the fuss today, but that's to be expected. Watching hockey on the TV is another matter; she and Rachel love the back-and-forth motion of the game on the screen. It has soothed Janneke from many crying spells, much to Ralph's amusement.

Now it's Friday night, and the family is settling in from a busy week. Janneke has a nice Carlton teddy bear to keep her company in her bed, and Rachel is happy to watch her night light. The rest of us are chillaxing, thankful for time to breathe and rest. 

And this bib's never being washed. just saying.

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peace for your night.

Dear Everybody... Is Anyone Listening?

It can be difficult to know exactly how to talk about disability. I know that some people would rather avoid the conversation for fear of offending. And then there are those who don't know differently.  When my Oma would ask about my girls, she would lovingly but ignorantly refer to Rachel and Janneke as retarded... because that was the language of her day.

Retarded has become an ugly word. It hurts.  Mind you, I did not berate my aging grandmother for her outdated vernacular because one doesn't berate their aging grandmother for her outdated vernacular. And she has since passed away.

But, there's no excuse for the rest of us. We can learn and grow a new language and perspective.

Recently, Holland-Bloorview Kids Rehabilitation Hospital launched a public awareness campaign called Dear Everybody. The idea is to start conversations, challenge assumptions and end stigma related to disability and life. 

Give this a read and a view. Print out a few statements and hang them up. Start the awkward conversation. You might be surprised by the amazing outcome.

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It's funny how we think of September as a beginning. Many of us are hard-wired to think of this time of year as the start of school and all things routine.  If you are like me, you crave the rhythm of routine.  I think that's a polite way of saying I am a bit anal retentive. It's all how you spin the word. The other day I heard someone on the radio say we ought to engage in more inner subjective experience. He meant, quite simply, we ought to spend more time daydreaming. Inner subjective experiences, or daydreaming, allow us the space and time to be creative and inventive. Or so they say.

So my latest inner subjective experience reflected on our summer.

We started the summer by saying goodbye to our teachers and friends with the end of school routine. For Rachel and Janneke, this has been a pretty smooth transition from school to being home full-time. Soon after school's end, Ralph, Em and Soph had a chance to visit Ottawa for the national festivities on July 1.  They had a great vantage point for seeing and hearing inspiring speakers, singers, and performers. 


Ralph and I had a chance to visit Switzerland and Holland. It is a production for us to go away locally for one night, so this was quite the complicated event to plan. We had wonderful help with Christina and Kaitlyn, as well as nursing staff, and the kids were in one piece when we returned. It was wonderful to hike the Alps, bike along the North Sea, walk through Amsterdam and visit the Moes homestead in Diever. A wonderful memory.


We did try to camp again. We are thankful for the same old souls who camp with us, but we are not certain we will take Rachel and Janneke camping again. Our summer also included a few visits to the hospital to learn more and better support Rachel through her growth and development, specifically as it relates to the increased levels of pain she is living with. Given that pain and concern, we were thankful to end our summer with a visit to a private residence on Lake Erie that included plenty of space for Janneke to scoot around and a heated pool where Rachel was incredibly happy.  And just before summer's end, I took Em and Soph for a quick camping adventure at the good ole' Pinery.


So we move into our routine, seeking harmony with the different activities and responsibilities that weave into our weeks. Kids are back in school, and Luna is back to sleeping on the couch.

Part of my time will be spent learning more and writing more about Community and Belonging, particularly as they relate to families and students with special needs. Much of my focus will be Christian (independent) schools, as that is what I've been asked to help support. One thing is clear, there are many amazing schools in our province, publicly-funded and independently-funded, and I hope to one day see equity in services for families caring for children with special needs, as they choose a school that best fits their child's needs. This means learning to understand our government ministries and learning to understand our smaller communities as they move and work within our larger communities. 

It seems, more than ever, that we ought to be looking at what we have in common - not what divides us. At times, the local and global news is mesmerizing, sad and challenging.. so much so that it seems silly to blog about one's summer. Yet, I know that we ought to keep going  - and encourage each other along the way. 

So.. cheers to summer. And wishing you the best as you start your own routines, rhythms or inner subjective experiences. We are in this together. 

peace. spot

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to begin again

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a poem for this school year's eve:

 

What Doctors Took Seven Years to Discover

He sits cross-legged on the sofa.

In his lap, a library book about Amazing Alphie,

a little computer wired 

differently from all the others. Yelled at.

Laughed at. Saves the day.

A tear slides down my boy's lip,

but his eyes are calm. I'm Alphie, he says.

Relieved this feeling finally has a name.

Angeline Schellenberg, poet                           

 

For those involved with a new school year: Wishing you and yours peace, patience, love, acceptance, and good humour. Look for the glimpses of growth and celebrate the small stuff.