Friday, October 23, 2015

inspiration vs. normal

So I am excited about something that others have been sharing this week. Though People magazine is probably my least favourite read, one of their articles went viral this week.  Here's the article via NPR for your perusal.

No, the People article is not about some other movie star or TV has-been. It's about a TV show that has been a favourite here... and I suspect in many of your homes for more than one generation.  Sesame Street has introduced a new character with Autism.  And with that introduction, they have also created resources to help parents and others.

No one person or organization is perfect, but I love that Sesame Street is trying. And they've been working at inclusion long before it became a sexy word. Back in the late 70s/early 80s, one of their writers, Emily Perl Kingsley (also happens to be the author of the poem Welcome to Holland), wrote her son Jason into the scenes as a regular guest. Her son also happened to have Down Syndrome.

Also trending this week - do I sound official? - is an article connected with Changing the Face of Beauty, an organization intent on promoting equal representation of people with disabilities in advertising and media worldwide.  Recently, Target (one of the companies willing to embrace this vision) featured a young model wearing an Elsa costume. The model just happened to also have braces and arm crutches.  However you feel about Target or Halloween, the visual presentation is pretty cool.  And one mom's response to the ad is worth reading.

Each day, we can be bombarded with images that challenge or motivate or guilt us into how we should live, act and perceive. Facebook and other social media can easily be used to distort truth or help us create a facade of reality.

So this idea of Sesame Street and Target working at authentic inclusion is encouraging to a family like mine, a family that wouldn't be considered normal by some.

Because it would seem that exclusion is a learned behaviour - and not just from magazines and the media.  More than once, I have experienced the well-meaning parent shushing their child and pulling them away from my kids - when all the child wanted to do was look at Rachel and Janneke and understand. Recently, this happened at IKEA with Rachel, and I felt discouraged and irritated. I wanted to approach the families and introduce my kid to their kid.

What I mean is that I'm not looking for my kids to be your inspiration, i.e. you need to make friends with my kid because she's disabled... I simply want to expand that definition of normal. As someone once said, normal is just a setting on the dryer.

a normal way to sleep - for Janneke

Because sometimes, I get uncomfortable with the excitement of inclusion being mainstream.  And I know that for a few families, everyday inclusion is sometimes too overwhelming.  When we talked about bringing Rachel into her community school, many said how great the experience would be for other children.  I agreed. But we also wanted to be confident the experience of inclusion would be great for Rachel. I have no desire to put my kid in the foreground of the photo to show you how cool Beacon is because they have a kid in a wheelchair.

Instead, I desire to see the kids in her school and the kids in her life simply accept and know that all kids are cool, created to be amazing in their own way and in the way of their Creator God. I believe He has purpose in disability - not to inspire but to challenge all of us to make the world better.

This is not meant to blow off or ignore the caregiver struggling to help their child or the person who is living with a painful disability.  The young Elsa from the Target ad with braces and arm crutches doesn't show us the harder parts of living with limits. If I don't believe there's purpose in the disability, somewhere, somehow, then there isn't anything left to hang on to.  That belief in purpose might only be one small thread at times... but it is there.

And hopefully, the more the stories are shared, 'grammed, tweeted, fbooked, blogged, told, chatted, the more our definition of normal changes, and our response to these struggles and to the needs will increase. That those listening and watching, from large companies and their advertisers to the people shopping at IKEA to the guy sitting next to you and yours in a restaurant, will not be so much inspired as motivated to help.

captured these three among many who were gathered around Rachel at recess earlier this week


Sunday, October 18, 2015

position and posture

Hey again.

Grandpa popped by and showed the girls what a slide projector is. As soon as the fan turned on, the sound brought me back to high school geography class with Mr. Meester and his slides of limestone on the Niagara escarpment. Yep, this was the original slide show, kids.

October is birthday month here. Sophia and Ralph had their birthdays this past week, and Emily has hers coming this week.  In between and around are the birthdays of almost half our extended family. That's a lot of cake and ice cream. Or mini tarts.

It's also election month - tomorrow Canada gets to vote in a federal election. We. get. to. vote. Wow. Want to catch a glimpse of not having that freedom? Watch Selma for starters.  Or learn about the 1960 decision here in Canada made by Diefenbaker.  

I am amazed at how much is written, said, and shared about this Canadian election. And the advice about who I should vote for, and who I shouldn't vote for abounds.  People talk about the phrase "Canadian nice" - well, the recent voting ads are anything but.  


This- all at the same time I am working with the seating clinic at the children's centre to tune up and repair the girls' wheelchairs. While measuring and examining the chairs, we talk a lot about position and posture.

Which leads me to think about the election.

I guess I hope whatever position you take tomorrow, whatever vote you make, that your posture on Tuesday and beyond is one that surpasses party lines. A posture that is bent on caring and showing compassion for the vulnerable, hurt, lost and less able.  A posture that emphasizes community and harmony -that we agree to disagree.

Because we will probably always disagree about something. Agreeing to disagree means we stop shaming and pointing fingers about the choices people make, and instead, we find common ground to foster a stronger community. And we don't stop advocating for a better life for each other.

Rachel enjoying some tactile therapy time


Monday, October 12, 2015

Happy trying-to-live-thankful-and-be-giving

Hey, Happy Canadian Thanksgiving.

Hi. It's been 71 days since we popped up a post. Have you missed reading this? (Maybe don't answer that. Laugh a little.)  Over the last 71 days, it's been busy finding harmony with family and work and life. There have been moments when I thought about blogging, but my heart wasn't committed.

I've wondered why we blog. It started as updates when Janneke was born, that time so long ago when we were knee-deep in sorrow, numb as we digested embracing another daughter with complex needs. That was over 6 years ago.

It's challenging to accurately encapsulate the myriad of emotions and thoughts that run through this house and this marriage as we take on each day.   As it is in many homes.  We are keenly aware of how persistent the temptation exists to stay frustrated with what isn't... what isn't the way we want it to be. Mental, emotional, and spiritual health are important to us, but they often suffer when we are trying to cope.

Maybe more can be typed about that in another post.

That being said, there are some good things happening this fall.

Rachel started at Beacon in September. And it's working. So well.

"psst... Kalan, did you do your homework last night?"

these students inspired the student body to raise money for a swing at school for Rachel

My favourite part about Rachel's experience so far? The response of the kids in school. Choruses of "Hi, Rachel" can be heard as she enters and exits the building. Kids have assigned themselves roles - protector on the playground, so the balls don't hit her chair, heavy-lifter in the hallway, carrying the beanbag chair to chapel and assemblies, and the countless check-ins of "Have you hooked her feed up properly?" "I think she needs to stretch her legs" and "How are you feeling today, Rachel?".

Em started high school. She loves it.  She sorta loves the bus ride. No more waking up last minute and walking over to class.

with Aunt Grace visiting from Minnesota

Janneke is still at the Children's Centre School, but she hasn't been well enough to attend many days. I think she has attended 10 since the start of the year. From one infection to another cold, she hasn't been super healthy. She is also sensitive to sounds; our little hermit would prefer a class of 1 kid.

Soph is in another year of school, but I suspect she'd rather be paddleboarding. She'll manage.

Ralph and I are sifting and sorting through the days. Some days are well done, and other days feel half baked.

But we are conscious of the growth that comes with each season and stage in living and parenting. We know these days shouldn't be wasted, won't be wasted.

We hope this week has good things for you and yours.


we do find Instagram easier for posting... you are welcome to follow our story there too.