to persist.

My theory is that when you are driving ninety miles per hour, you stay ahead of much of the pain. But pull into a rest stop, and disappointment catches up and parks beside you. Disappointment in others. Disappointment in yourself. Others’ disappointment in you. People you cared about who moved out of your life. Sadness over unmet expectations. And weariness. Sometimes you don’t realize how tired you’ve become until you stop moving.

So writes Jeff Manion in his book, Dream Big, Think Small. His particular piece on recovery has struck a chord with me - as has this quote:

After major events or an unbroken string of demanding challenges, the soul pleads for repair.

He’s a pastor - and you don’t need to be in his congregation to “get” the reality of his words.

This idea of the soul pleading for repair is… well, so familiar.

Manion writes of the importance of seeking out restorative practices for our souls. Ideally, we ought to consider what can bring renewal before we are completely undone. Maybe this is a pipe dream for some who are already spent and trying to claw their way out of the hole of exhaustion.

Manion shares how in preparing to run a marathon, one must also plan the post-marathon work. Because if there is no plan, the body will just give in to what feels right…. for example, one might want to collapse into a hot tub and just sleep after running such a long distance. But, the body actually needs a cold soak and stretching first.

I don’t run marathons. But I do know the feeling of wanting to unwind with what seems an easy fix at the end of a long day (which sometimes feels like a marathon). Maybe for some of us, endlessly scrolling through social media seems “deserved” but is it?…. Does it truly fill the soul, or are we being deceived (and further exhausted) by what is pictured? Or maybe the scrolling only shows more stories of injustice, sorrow, inequity…squashing any seeds of hope that maybe things might get easier or better.

I don’t know if I necessarily have a resolution or a word or a mantra or a goal, but my hope is to persist at hearing my soul’s pleas, to figure out what I ought to do vs what I want to do when it comes to rest and renewal.

onward.

on restarts and new beginnings.

Happy New Year. And all the best with that.

(Not so new, parts of this post were published previously here.)

In their schools, Rachel and Janneke have individualized education plans (IEP). 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.

action shot of Janneke’s IEP meeting

action shot of Janneke’s IEP meeting

I reference those IEPs because it’s almost 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% 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 is The Ideal?

What happens when we don’t fulfill our resolutions? Does that change how we see ourselves? Does that 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 wonder if, over time, we both intentionally and inadvertently develop an excessive admiration for an ideal and for a standard of normal, isolating those who don’t fit from those who fit.

Though obvious, we must be reminded: How we see disability… how we see LIFE impacts how we see ourselves and how we see each other.

Disability is a factor in the cult of normalcy.
— Thomas Reynolds, A Vulnerable Communion

(photo credit for thumbnail: Emily Pot)

on longing and hope.

Hope deferred makes the heart sick,
but a longing fulfilled is a tree of life. 
— Proverbs 13:12

I thought I could write something deep and meaningful about longing and hope. But the thoughts aren’t sorting themselves today. I’m tangled up in the emotions that come when I hear stories sorrow and angst, stories of children and families impacted by loss, disability, mental health, poverty, and isolation. I know that hope can breed resilience, providing meaning to keep going. But sometimes, hope deferred makes the heart so very sick.

So may we see each other, help each other - and hope WITH each other.

My hope is that 2019 brings a stronger sense of community and belonging for all. And instead of writing something, I’m sharing a beautiful video that is worth watching more than once.

https://fundacionian.org.ar/the-short-film/

(photo credit for Pot blog thumbnail: Jennifer Elizabeth Photography)


companioning.

IMG-5391.JPG

It’s the idea of coming alongside someone in their journey. Dr. Alan Wolfelt refers to it as the practice of entering the wilderness of the soul with another human. The word literally refers to “with bread”… makes me think of the fellowship experienced when we sit down for a meal. Which seems rare these days, given the drive-thrus and coffees-to-go.

Years ago, when my friend Kevin and I would return to university after a weekend at our respective homes, we’d often be driving into the sunset. To help pass the time for the long drive, we came up with this game where one of us would start by pointing out the “land” in the clouds; we’d take turns pointing out the outline of the land and the water that suddenly seemed so real, highlighted by the sun’s rays and the cloud formations. The imaginative exercise of driving towards that faraway wilderness would take over serious conversation - or any conversation.

There’s something pretty sweet about keeping quiet company. And that quiet company can be a gift to someone who’s on a difficult journey.

The human soul doesn’t want to be advised or fixed.... It simply wants to be witnessed — to be seen, heard and companioned exactly as it is. When we make that kind of deep bow to the soul of a suffering person, our respect reinforces the soul’s healing resources.
— Parker Palmer

Here’s more from Palmer: The Gift of Presence, The Perils of Advice

And from Yahoo: Valuable gifts for a caregiver (that cannot be purchased)

from a twitter feed of a physician at Johns Hopkins hospital: I believe in you.

And this clever piece that takes the concept of companioning and adds a challenge:










Winter and Wheels

I grew up loving snow, sledding, and cross-country skiing (ok, loved it as a kid, hated it as a teen, but grew to love it again). Living in Huron County meant we were almost guaranteed a week’s worth of snow days (canceled school). I remember playing outside in the snow for as long as possible after supper, particularly after a fresh snowfall. One year, my dad helped us construct a snow fort, complete with supported roof. Its beams? Hockey sticks, of course.

As a parent, I loved seeing the excitement for snow in the early years with Emily and Sophia, complete with their rosy cheeks, frosty mittens, runny noses, and huge smiles. Mind you, now that they are in their dormant season of screen, homework, and school, there are fewer impromptu snowmen on my front lawn. No longer excited to sled down Dad’s driveway pile of snow on their Krazy Karpets, the girls are usually keen to plan a trip to Holiday Valley (NY) to downhill ski or snowboard.

Unfortunately, it is not so fun to accept the limitations snow has for Rachel and Janneke. We try to take them outside to catch a few snowflakes and take in the fresh air. It is more than challenging to go for a walk or keep warm; the memories are more often made through the windows.

IMG_0356 5.JPG

I know our girls are privileged to have caregivers push them; those who have to maneuver the sidewalks and city transit with slush, sleet and bus juice take this winter battle to a whole new level.

So, here’s to reminding all of us about clearing our sidewalks, looking out for each other and making sure pathways are clear. And here’s to being creative with problem-solving!





Power of the Peer

Janneke is enjoying Grade 4 and relishing in the attention of her curious classmates, many of whom are both interested and hesitant to be alongside her. They are growing accustomed to her random hollers and her drool; they love to read to her, sit with her, push her, and help her learn. In fact, there’s a schedule of taking turns since the demand to be with Janneke is so high.

The same situation happened when Rachel joined her classmates three years ago. I did not take their desire to help for granted; as time passes, the gap between my kids and their peers widens, and their attention is slowly drawn elsewhere.

The power of the peer cannot be taken for granted. If we talk about creating accessible schools and inclusive education, it HAS to start with creating a culture of belonging among the kids and staff. You can have the most beautiful physically accessible building, but it will not be truly accessible unless the people inside are welcoming and accepting.

I do not underestimate the power of the peer. Jack, one of Janneke’s classmates, has somehow connected with Janneke through reading - and gotten her to point at animals as he reads. This is a brand new skill, and it is one that she doesn’t willingly do with too many people. I won’t pretend to understand why suddenly this has suddenly appeared with Jack, but I love it. It speaks to hope for what she might do with more time spent among her peers, more opportunity to try new things. I also love the affirmation from Jack (and the casual wiping-off of drool as he turns the page).


Looking for ideas on harnessing the power of the peer? Check out these links:

http://campsontracks.com/: I know, it sounds like camp - and it does involved the camp program, but it is also applicable and available for schools!

https://vkc.mc.vanderbilt.edu/assets/files/resources/psiPeermedstrategies.pdf: This includes work from a professor I deeply respect and appreciate, Dr. Erik Carter.

http://blog.brookespublishing.com/second-post-back-practical-tips-for-peer-supports/: easy resources for application from Maryland

https://clcnetwork.org/for-schools/standard/: Even if you aren’t in a faith community school, I think you’d appreciate the perspective and direction of this document. Click the link and download the document.

http://www.learningforallab.ca/peer-interactions/peer-supports/: a helpful resource from Alberta






Earlier this week, I had the opportunity to attend, present at and support the annual Empowered Kids Ontario (formerly Ontario Association of Children’s Rehabilitation Services) conference in Toronto. It’s attended by clinicians, physicians, leadership, and families - all looking for connections, new ideas, and best practice for children who live with disability.

I’m also new to the Board of Directors for EKO, and I am excited about the opportunity to support and serve in the days ahead.

At the same time, I need to be honest about the tension that sits within me. I know I am not the advocate for all families - nor do I pretend to be. I know I can’t represent all families; I am a white female who lives with the privilege of community that catches me when I fall, and I am in a traditional relationship with my husband (of 20+ years!) whose mantra is: “We’re in this together.”

I don’t say that to apologize for it, but I say it because it is part of what I struggle with when someone asks me to speak, write or present. I love Sue Robins’ post:

Always, always consider: how can I bring other voices along with me? How can I use my power to create opportunities to share at the podium or around the boardroom table? How do I inform myself by actively seeking out and listening to people who are different than me?

Raising a child who lives with disability makes the ordinary complicated and the norm… well, there’s no such word. Though there are common diagnoses, there are no common children - and each child and family experiences disability with a unique set of circumstances.

Given that, I do think there is a common through line that moves among many of our families and children - one of grief and loss. Though there may not be a physical death, we have to change or bury the dreams and plans that don’t fit with our new reality. Some call this ambiguous loss, and its haunting can take root in our ability to cope, to make decisions and to nurture relationships.

This, in a nutshell, is why parent advocacy is not something to be taken lightly.

As we look for those who have yet to be heard, we also have to find a way to work together with organizations, systems, families and government. It’s hard when hope can be glimpsed but not grasped, when equipments, services and resources are either unavailable or denied. But it is even harder to find a way through alone. I’ve read more than once that “more money will fix this.” I don’t believe funding is the sole fix. We need to foster a provincial culture of belonging - where funding is part of the picture, but so is community, acceptance, collaboration and creativity.

So.. I look forward to possibilities and refuse to give up believing that there is good ahead.

If you are one of those [patient engagement] voices and you are not actively creating space for people who are different from you, then you are part of the problem. (Sue Robins)


for September 5, 2018

photo credit: Jennifer Elizabeth Photography

photo credit: Jennifer Elizabeth Photography

*was published earlier: http://www.christiancourier.ca/columns-op-ed/entry/cheers-to-a-new-year

This school year marks a change for our family. It is our youngest daughter Janneke’s first year in her community school; she is entering Grade 4 at Beacon Christian School in St. Catharines. Prior to this year, she attended Niagara Children’s Centre School, a small school connected with our local children’s treatment (rehabilitation) centre, Niagara Children’s Centre. The school authority is one of six schools in the province of Ontario mandated by the Education Act and is part of Ontario’s Ministry of Education.

Intentional support

Niagara Children's Centre School is unique. It welcomes and works with children who have exceptional needs; the students are specifically chosen to attend the school, and the program is intentional, providing intensive support with the students' progress. Rachel and Janneke each had four great years there, with one of those years overlapping - making it a total of seven amazing years.

 Unlike other schools that desire to educate for a number of years (preschool-8; K-12), this school is meant to be a temporary stop in the journey of learning. Some children are in the school for one year, and other children remain for several years. The tears of the departing families on the last day are clear indicators of the fear and concern parents have for their children who will be transitioning into a larger school setting. Some of our community schools are well-equipped to welcome children of diverse needs, and some schools are not so prepared.

A question to be answered

I am often asked what Rachel and Janneke actually do in school, particularly as it relates to the 3 r’s: reading, ‘riting, and ‘rithmetic. How do my non-verbal, severely disabled, cognitively-delayed children do school?

I believe the answer to this question is found in how we view education. If we see education as a measured pursuit of academic excellence with independent and economically-skilled youth as the outcome, then children like mine do not belong. The space is limited to the survival of the fittest.

If we see education as a lifelong journey with our school experience providing a unique opportunity to live and learn in community, to cultivate interdependence rather than independence, then children like mine belong. The space is safe, generous and welcoming.

Thriving however they grow

Creating communities of belonging in our schools is a good thing. I love the variety of public and private community schools in my region. I wish for all these schools to be accessible to families with special needs and for these schools to find ways to collaborate when it comes to kids with special needs. Helping kids thrive however they grow and wherever they go is a very good idea - and it is also a very biblical idea.

Part of the transition for Janneke from her old school to Beacon Christian included a class visit this past June. Janneke’s soon-to-be classmates from Beacon came to Niagara Children’s Centre School to learn more about Janneke. When the students filed into her classroom, Janneke immediately started moving through the school in her walker, and the students chose to follow her. As they told me later, "Mrs. Pot, she's a great tour guide! She showed us her whole school!"

Where everyone knows your name

I am trusting that the next step for Janneke at Beacon Christian will be a good fit. Though I can only guess at what she might be thinking and processing, I know she knew Niagara Children’s Centre School to be a safe place where she belonged. She loved exploring the school in her walker, and she had many schoolmates call out her name in the hallway every day.

 This coming school year will include a lot of watch-and-wait and let’s-try-this and see-if-this-works. Admittedly, I am nervous about the classmates’ reaction to Janneke’s drool and loud hollers. I remind myself that it didn’t take long before Rachel’s peers adjusted and then were quick to defend Rachel’s unique abilities to visitors. My hope is that Janneke will confidently explore the hallways of her new school, that students will know her by name, and will feel safe and welcomed.

 For she is not on her own, but she belongs….


A chapter ends.

Today was Janneke's last day at school -her last day before summer and her last day of school with Niagara Children's Centre School. (Why yes, those are three medals on her tray: Friendship, Creativity, and Math.)

Though I can only guess at what she might be thinking and processing, I know she knew the school to be a safe place where she belonged. She loved exploring the school in her walker, and she had many schoolmates call out her name in the hallway every day. 

Niagara Children's Centre School is unique. It welcomes and works with children who have exceptional needs; the students are specifically chosen to attend the school, and the program is intentional, providing intensive support with the students' progress. 

I've learned a lot having both girls enrolled in that school. Rachel and Janneke each had four great years there, with one of those years overlapping - making it a total of seven amazing years. Here's a glimpse of my parent experience:

  • There are many great schools out there. This is one of many. We need to celebrate the great schools that exist - and tell others our stories. 
  • I love staff that sweat kindness and love, even when there appears little progress to report for the IEP. Janneke belonged there, and they missed her when she was absent.
  • This school is unique in that it chooses to intentionally support our children with their needs and prepare them for their community schools. It's meant to be a temporary stop in the journey of learning. Some children are in the school for one year, and other children remain for several years. Many parents of children in this school would love for their children to remain - and not move to a community school. The tears of the departing families on the last day are clear indicators of the fear and concern parents have for their children who will be transitioning into a larger school setting. Some of our community schools are well-equipped to welcome children of diverse needs, and some schools are not so prepared.
  • This school fit my kids for this chapter of their lives, and I am trusting that the next step for Janneke will be another good fit. Rachel had a successful transition from her years at the Centre school into her community school (Beacon Christian), so we are hoping the same for Janneke.
  • Creating communities of belonging in our schools is a good thing. I love the variety of community schools in my region - public, Catholic, French Catholic, Christian, Muslim, Jewish, Montessori... to name a few. I wish for all these schools to be accessible to families with special needs and for these schools to find ways to collaborate when it comes to kids with special needs. Helping kids thrive however they grow and wherever they go is a very good thing. 
  • My favourite moments have been seeing the schoolmates interact with each other in the hallway. I love the tenderness they have for Janneke (and in the past with Rachel). I love it when the school shows a slideshow of photos at an assembly, and the whole room hollers out names, as faces are recognized. When a crowd of students includes verbal and nonverbal children, the annunciation may be lost, but the cheer for each other is very clear.

As the year ends, I will leave last week's experience as the last word: When Janneke's new schoolmates (Beacon's Grade 3) came to visit her at the Centre school, she was in fine form. Janneke immediately started moving through the school in her walker, and the students chose to follow her. As they told me later, "Mrs. Pot, she's a great tour guide! She showed us her whole school!" Though I wondered if they would have questions about Janneke's disability or her unique mannerisms, they seemed most concerned that she would have a summer break like they do. 

We will wait to see what September holds. I am so thankful we had the experience of belonging at the Centre school, and we will shape those awesome memories into courage moving forward.

Janneke at school this morning... our own little one-glove wonder. Music cues her spirit in a very special way.

I am especially thankful for this dancing video today.

Because it was last night that Janneke decided not to sleep. Like many other nights, she chose to roll around in her bed, laughing and hollering instead. She was not unwell; she was happy and simply not tired. 

This wouldn't be a problem if she was in her own room, in her own house. Much to Rachel's chagrin, Janneke shares her space with her sister - and the house with her family. This means when Janneke is hollering and laughing, Rachel and I are also awake, albeit not hollering and laughing. 

The night shift challenges my sense of humour and ability to cope. Once the light of dawn creeps into the room, I can laugh about my atypical loveable kid and have another cup of coffee. But not in the middle of the night. It's not funny then. 

It amazes me that Rachel, in her nonverbal way, expresses her frustration with Janneke during these nights. The banging of Rachel's hand on the bed and the groans emit a silent swear word, directed at her sister.  How typical.

Hoping for a better rest tonight. For all of us.