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. 

The Boy in the Moon. And other thoughts.

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I hear parents of other handicapped kids saying all the time, 'I wouldn't change my child,' " Johanna said one night. We were lying in bed, talking as we fell asleep. "They say, 'I wouldn't trade him for anything.' But I would. I would trade Walker, if I could push a button, for the most ordinary kid who got Cs in school. I would trade him in an instant. I wouldn't trade him for my sake, for our sake. But I would trade for his sake. I think Walker has a very, very hard life.

This, from the book The Boy in the Moon by Ian Brown, Canadian author and journalist (Globe and Mail). Brown's book is about his perspective on loving and caring for his son Walker, born with cardio-facio-cutaneous syndrome.

Need a summer read? Read that book.

This past Saturday, Ralph and I attended the play based on the book, performed at the Crow's Theatre. Including the irritating pre-performance of us sitting in traffic and the dramatic post-performance of us fighting about this-and-that, the outing was a real-to-life experience. At times, it felt as if the actors portraying Ian Brown's family were actually in our livingroom, replaying parts of our story. Held on a stage with minimal props and beautifully orchestrated light and sound, the play included excerpts from the book, and, at appropriate moments, photos of Walker were transposed on the back wall.

There's so much in Brown's writings that resonates with my own experience. It was the first book I read about loving and caring for a child with special needs that felt real. It was freeing to know there was another parent who struggles to find meaning and hope - and swears in the middle of the night when they are wrestling with an active kid and a feeding tube. In particular, I loved reading about his conversations with Jean Vanier. 

The more we meet the handicapped on their own ground, rather than our own, Mr. Vanier says, the more we evolve. We begin in fear of their appearance and behaviour; move on through pity; pass through the stage where we help them and respect them, but still see them as lesser beings; until finally we experience "wonderment and thanksgiving," and "discover that, by becoming close to disabled people and entering an authentic relationship with them, they transform us. They help us to move from the personal desire for success and power to a desire to be with those who are weak and help them to be just as they are, knowing that we receive as much or even more than we give."

The most beautiful sound during the play? The sniffling soft sobs of the audience. 

When I heard the runny noses being blown and glanced around to see tears being wiped off the faces, I wanted to sing out something like Hallelujah. As crazy as that might seem, my hard heart was cheered. 

There are so many stories still waiting to be told. When their power is harnessed, my hope is that we see a movement of radical compassion - not based on pity or on tears of sympathy, not based on what is familiar or comfortable, but on a desire to see and know a stronger diverse community with all parts flourishing.

peace. spot

(quotes taken from The Boy in the Moon)

Need another story - with pictures? Peek at this trailer: 

whaddyathinking?

This week, I met with Janneke's SLP (speech/language pathologist). Janneke is nonverbal, meaning she doesn't use spoken word (or sign), but as we watch her grow and develop, we catch glimpses of how she is interacting with her world. At school, they are offering her choices with picture cards; as she studies the pictures, they observe her eye gaze to determine her preference. The hope is that her eyes will rest longer on the card she prefers. This method isn't always successful, but it's one idea we are trying. 

Our consultation time revolved around the idea of building Janneke's receptive vocabulary. Receptive vocabulary refers to the words that Janneke can internalize and understand. This is not to be confused with her expressive vocabulary - which is difficult to determine since she is nonverbal and not signing. Expressive vocabulary refers to the output, the word spoken or communicated. These words might not actually be understood by the speaker, but they are the ones that can be expressed.

It's possible that one might express a word without fully comprehending its meaning. 


Sometimes I use big words I don’t always fully understand
in an effort to make myself sound more photosynthesis.
— the Internet (which is a very expressive space and difficult to cite) @itsWillyFerrell

I remember as a child reading big words from the dictionary in my dad's office and then trying them out on my aunts and uncles at Oma's house. Judging from the laughter in my memory, I'm pretty sure I didn't get the word right. 

It's not as funny when grown ups use words without understanding their meaning or the implications of expressing. S. Covey writes, "Most people do not listen with the intent to understand; they listen with the intent to reply." 

Though there are a few moments when I'm pretty sure Rachel would offer a sassy comeback if she could, there are more moments when I can only guess at what both girls are taking in as everyone talks, shouts, and laughs around them. What are they hearing? 

When I watch Janneke and Rachel quietly take in their world each day, I wonder how big their receptive vocabulary is.  There's nothing to suggest that it's as limited as their physical capabilities.  So we talk with Rachel and Janneke - and tell others the same - as if they could respond, hoping to build their receptive intelligence. And then we (try to) patiently wait for their expressive response. 

Always learning.

peace, spot


Back to this blog idea.

The look and location has changed; instead of finding us @thepotfamilyblogspot, we are now @ sara-pot.squarespace.com. This change has come for several reasons, one being that Blogger was getting more frustrating to use, and the other that I am cautiously but deliberating seeking ways to share our story. 

It's intimidating changing our location from the family name to my own name. It seems a bit, well, self-absorbed.  

Yet, given my work with writing and speaking, we needed a spot (ha!) to send inquiries. 

So, this is the new look. 

Happy Birthday, Rachel... and back to the blog.

It’s been awhile. Blogging took a back seat since last August. Last summer was tough. With both girls developing sepsis suddenly (Janneke in July and Rachel in August), we needed a break from a few things.

That doesn’t mean I wasn’t writing. 

For whatever reason, I found blogging to be extra challenging after the summer. Maybe it’s because I sometimes wonder if blogging is too personal. Or blogging becomes self-promoting - “whoohoo, look at our family.”

Yet.

I am aware of the power of story.

Flannery O’Connor is associated with the quote: A story is a way to say something that can’t be said any other way.

I guess that is part of the why we keep writing -and now blogging- again.

Eleven years ago today, we welcomed Rachel Joy into our family. Eleven years, we took our first steps in this journey of new normals, feeding tubes and wheelchairs. It’s been eleven years of searching for a rhythm we can call familiar.

In preparing for my recent address on resilience, one article came to my attention - and I haven’t forgotten it. Published in the Journal of Family Studies, Welcome to Holland: characteristics of resilient families raising children with severe disabilities (Knestrict and Kuchey 2009) looked at 17 different families.

In addition to finding a positive relationship between healthy socioeconomic status and resilience, “The study also found that having the time and the ability to reflect was a key to reconfiguration, which is seen as crucial in the development of resilience” (Knestrict & Kuchey).

This part stood out as soon as I read it: having time and the ability to reflect.

These are often elusive gifts to many families who are living with disability. I am thankful for the nursing support and respite we have; I truly see them as gifts that allow me to exhale. 

Perhaps that was what the gap from August to now with blogging was - time for reflecting. Let’s call it that.

The authors go on to describe that resilient families were ones who created a routine, albeit unique and foreign to others, and from this routine came a rhythm, a framework that the whole family leaned on.

I love the expression of rhythm. When I taught poetry, we explained rhythm as a literary device that includes long and short patterns through stressed and unstressed syllables. It is a measured motion that creates identifiable patterns.

I’m going to draw a parallel here: This rhythm in our life is a process of trying to include all the ups and downs, all the loose ends and sorted pieces, and create something familiar. And we do feel as if we are constantly in motion. The hope is that our motion is mostly measured - and less chaotic.

Does this make us resilient? That seems somewhat presumptuous. I feel as if resilience is a describing word for the epilogue of a book: And they were a resilient family that withstood adversity and hardship. The end.

We’re not at the end of our story.  In the meantime, we are forever seeking ways to thrive - not just survive - but that takes tremendous energy, time, and confidence (financial, emotional, spiritual) to move forward.

Recently, I heard a song that has stayed with me. It’s by Moe Clark, and I am drawn to the line I find grace in the simple things. In searching for routine-that-turns-into-rhythm, I have to remind myself to look for the simple things, to be content with the small steps.

And in those small steps, I want show the importance of doing this life together. I want to help other families find rhythm too. 

We are thankful for Rachel’s eleven years. We are thankful for the joy she brings. We are thankful for her smile, for her awkward-but-perfect elbow hug, and for her foot rubbing. She exudes a profound love that we can’t quite articulate in a word, so we continue to tell the story.

It’s not all roses here, and I don’t want to tie this up with a pretty bow; it is a story that ain’t over.  

peace,  

spot


(So, it does sort of look like things have changed with this website - a sort of “whoohoo, look at me.” I’d love your feedback.)