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Watch what you say; you never know who maybe listening.

Awhile back I forward on a wonderful post by a another mother of a precious little girl named, Rowenna. The blog talked about not referring to children with the diagnosis of Down Syndrome as “Downs Child” or “Down Child” or any other way where the diagnosis is the child and not something the child has.

Simply put, you wouldn’t call a child with chicken pox “Chicken Pox Kid”, an over weight woman as “Obese Woman” or a boy with cerebral palsy “CP boy”. These diagnosis don’t make the individual. The individual HAS the diagnosis.

That being said, after posting this particular blog, I received a comment from a friend of mine from Mabel’s Labels who mentioned a situation she was in where a mom of a child with Down Syndrome was head counting her kids and said “now, where’s my little downsy? oh, there he is”… ARE YOU KIDDING ME?!?!?!?

My friend commented that she was very taken back. She has experience with autism and made the comment that she has never heard anyone use the “hey, where’s my little autistic” phrase.

My biggest frustration with having a child with Down Syndrome is society’s genuine ignorance to these individuals, their capabilities and inturn how to change these perceptions. To have a parent call her child that in a public forum makes me sick to my stomach.

Person first. Diagnosis last. It’s not complicated; just common everyday respect.

This past weekend I had the privilege of meeting another family of a child with Down Syndrome while out celebrating Canada Day in true Club 21 style at the Goderich Canada Day Parade.
Please understand, this family is very supportive and excepting of their child and his diagnosis but still some family members are using inappropriate language. Referring to having “one of those kids” or “Downs kids” etc.
I have two big problems when I find myself in these situations. First, I get so hung up on the language they are using that I can’t hear the actual conversation. Even though I know they are trying to support our kids, their choice of words is so insulting and segregating that it negates all that they are trying to say. Second, I don’t know how to begin to correct their error without insulting them because again I realize in this case there is no ill intent. Give me a blog to vent on, fine. Let me rant on twitter, great. But put me face to face in a situation that’s supposed to be fun and positive and I clam up.

Teaching “People First Language” is great and very important but how do you have that conversation in a face to face situation without insulting the uneducated speaker?

And for all those parents who should know better, I challenge you to choose your words carefully. You never know who may be listening.

How do I pick? …HostelBookers #7 Supershots Challenge

Leave it to a friend to remind you to take some time to reminisce as well as get you back on track with something that is important in your life yet you always put off for another day.

Last night I received a tweet from @tweepwife (www.lifecache.ca) challenging me to search through the thousands of photography files that have built up on my hard drive and participate in the HostelBookers 7 Super Shots.

What I found through the search was that I love my photos and sharing with others should be something that I dedicate more of my time to. What I also determined was narrowing the choices to only seven was hard!

So I limited my choices to those taken in past the 18 months and this is what I’ve decided to share as I walk down memory lane….

1. A photo that… Takes my breath away

This photo is a moment I captured when my father-in-laws barn burnt down. It takes my breath away for a few reasons. First the colours & composition just worked. It showed the viewer exactly the intensity that those of us present felt at that moment. You can feel the heat, power and allure that a fire of this magnitude creates. The living body a fire becomes is breath taking and every time I see this picture, I am reminded of that fact.

2. A photo that… makes me laugh or smile

The moments I cherish most as a parent are those I see the true love and devotion my kids have for one another. When they give each other a hug of support or take the time to sit and read together. Or, as in this photo, when they take each others hands and together run into the world full of hope, love and excitement. Catching these moments on film are few and far between but when I do, it allows me to relive that feeling of pride as I sit back and smile in reflection.

3. A photo that… makes me dream

What makes me dream isn’t the actual photo but the subject it highlights. For those of you who know my family, one of our goals is to change the way the world sees my daughter. To change the preconceived notions surrounding Down Syndrome and all individuals our society deems “less” in some way. Everyday I see the beautiful smile, bright eyes and determination in the face of my ladybug and I remind myself that together will meet all of her challenges head on. We will build her up and make all her dreams come true. We will strip away the labels and show society that she and all of her friends have something to share with this world. That is our dream.

4. A photo that… makes me think

To appreciate the true magnitude of this image, click to enlarge

Our family had the opportunity to travel to Washington DC last year. During our tour of the area we showed our children many monuments and buildings of significance. My son found the Korean War Monument most preeminent but for me Arlington Cemetery gave me the greatest pause. The vastidity was overwhelming and I spent much time thinking of the individuals & families who suffer as a result of the hatred within our world.

5. A photo that… makes my mouth water

Last summer we visited Nashville for a conference about Social Media & Agriculture hosted by AgChat. Before we departed this lovely city we took some time to visit the local farmers market. The colours, the smells, the freshness of the produce touched every sense as we walked through the stalls. This is just one of the numerous images from that day that, as farmers, we felt showcased the value of agriculture as well as tempted ones taste buds to reach out and grab a bite!

6. A photo that… tells a story

This is a photo that I’ve shared online before but that captures a very precious story for our family. My husband was raised on a dairy farm. He spent his whole life around cows and as a family we had hope to raise our children the same way. Unfortunately, that dream will not come to fruition as the dairy portion of his family’s farm was retired last July. Prior to that our kids spent many hours in the barn helping with chores and acting as the “Welcoming Committee” to new arrivals. Having this moment with our girls and a brand new “steaming” calf captured on film is priceless and is a token for them to remember being a part of their family’s history.

And finally my last pic for this challenge.
7. A photo that… I am most proud of (My National Geographic shot)

First, I need to clarify… I don’t necessarily believe this is the photo “I’m most proud of” but I could see it in a National Geographic spread. I wanted to include this image in this challenge because it’s different than the others I’ve shared and, in my opinion, the movement, colour and composition are bang on. I was thrilled with this shot and wished at the time I had a magazine to share it with. This photo was taken on our Floridian vacation in one of the perfectly lit Sea World Aquariums. Jellyfish always seem to draw me in with their fluid movements and gracefulness and this picture captures that for me. I find these exotic creatures fill me a calmness few other things in this hectic world can and I’m grateful to have this photo to remind me of that feeling.

As I bring this post to a close I would like to thank @tweepwife for getting me back to my blog and my photography. This challenge reminded me that I have passions of my own and I need to take the time to embrace them again. To fill my soul so that I may fill others.

And now, I spread this challenge to others. – I have choosen seven bloggers (instead of the requested five) to give it their best shots in the HostelBookers 7 Super Shots:

My choosen Agriculture reps include…
@JPlovesCOTTON from http://janiceperson.com
@kmrivard from http://kellymrivard.com
@AR_ranchhand from http://agricultureproud.com

My choosen Down Syndrome reps include…
@CarrieWChildren from http://www.carriewithchildren.com/about-carrie-with-children
@DownSideUp from http://www.downssideup.com/

And two extras who I would like to represent Huron County with the brightest lights…
@sarahnadian from http://atransparentlife.com/
Melissa Wormington (who’s not on twitter but who’s blog should be seen by many!) from http://melissawormington.blogspot.ca

Go to it girls and guy! Show the world what you’ve shot!

Jen

Jan 5 – Smiles for Daddy

My husband was away this day and the kids wanted me to send him some pictures for many different reasons.
Little Bear wanted Daddy to see her pompoms.

Our Ladybug wanted to send hugs.

and Peanut, he thought it would be fun to pose with his bear.

So for this day, you get three glimpses into our silly world!

New Glasses!

Summer Fun!

Canada Day Parade!

Yesterday I was thrilled to be apart of the first ever Club 21 Canada Day Parade Float!

With the help of a tractor & wagon from one of our farm families, some strategically placed Canadian flags and a few not so subtle Down Syndrome Awareness signs, we loaded up some of our kids and families and joined the festivities as we made our way around the Square in Goderich for the annual Canada Day Parade!

The float was a great success and more importantly, we all had a fantastic time!

Our Canada Day Float

A Bear and a Ladybug waving to the crowd.

Our message to the crowd... "don't DIS my ABILITY!"

and "more ALIKE than DIFFERENT"

Brought to you by Club 21 - Huron County!

HAPPY CANADA DAY from Club 21 – Huron County!

Happy Canada Day!

Proud Canadians!

From my family to yours, Happy Canada Day Weekend. We hope you’re enjoying the sun.

Challenges of a different child

When people see our family most people look at our daughter and comment on how well she’s doing and how we are an such an amazing family  for helping her over come her challenges. Funny enough, my ladybug’s diagnosis of Down Syndrome offers up less ‘challenges’ than most assume. Yes, she takes a little extra time to reach some goals but her own determination gets her through that, not necessary anything I do.

My son, on the other hand, offers me up challenges but his are coming from a whole other direction.

He is smart. I’m not saying he’s a genius or anything like that (I hate parents that make that uneducated deduction.) but he is very smart. I mean some times the ideas and thoughts that come out of his head leave me wondering where exactly he came from. Don’t get me wrong, I married a very intelligent guy and I like to think that I can hold my own in the smarts department but our son is on a whole other level.

He’s seven, reading books that were made for 12-18 year olds. He taught himself (using an iPad program) to play chess in January and the first week of April got third place at a regional tournament. He hears or reads about something that catches his interest and follows through by researching the topic to death or until something more interesting comes along.

This past February we went to Washington as part of a two-week family vacation that took us to Ottawa, Washington, Orlando, and home again – as well as all points in between. When we got home I expected all the discussion to revolve around our one day at Disney’s Magic Kingdom (and for my girls it definitely was) but for my son, he wanted to learn more about the Korean War. Yes, the Korean War. And let me tell you, he was none to impressed with the fact that his school library had nothing to offer him on the subject.

He loves to help ‘save the world’. He loves David Suzuki. Plastic water bottles have been banned from our house. He wants to do litter patrol up and down our roads. He gave up his birthday party to raise money for Japan’s earthquake survivors.

But that’s how he works. Learning about history. Building robots that work (no Lego here folks). Teaching himself Chess. Saving the world – one cause at a time.

The challenge isn’t who he is but keeping him engaged. School bores him. Books that interest and challenge him but are age appropriate are hard to find. He just turned seven three weeks ago! And all the novels are violent, scary and nightmare inducing. He brought a book home from school last week, “Blood and Iron – Building the Railway”, it’s a diary of young Chinese worker who was brought to Canada to help build the railway in 1882. It’s a true story. It’s History. It’s scary, upsetting and gory! With this book I can’t tell him “it isn’t true, it’s a story out of someone’s imagination, it’s nothing that could ever really happen.” Problem is that he wants to learn about history and the world but the books that are age appropriate don’t give him enough.

At school our little ladybug gets a specialized program designed to help her succeed despite her ‘challenges’ but in grade one my advanced child is told to wait. In grade FOUR he’ll be evaluated and a special program can be implemented.

My problem is getting him to go to school until then.

Labels…

They start at the moment you enter this world.

  • Boy! Girl!
  • Apgar 6. Apgar 10.
  • Big. Small.
  • Strong. Weak
  • Breastfeed. Bottle fed.

None of that seems so bad. No big names that are going to rule your world or decide who you’re going to be. Right?!?!

Well ok, if you’re in China the value of a boy is much higher than that of a girl and of course you always want a STRONG healthy baby…and who’s kidding who, of course you’re looking for that perfect Apgar 10 and well, breastfeeding is “better for the baby”…..So a STRONG BOY with an apgar score of 10, who nurses well from its mother is ideal, Right?!?!

Truth be told, any of the above would be acceptable. Loved. Cherished. Welcomed by society.

But then the labels continue…

  • Smart. Slow.
  • Beautiful. Ugly.
  • Athlete. Nerd.
  • Fit. Fat.
  • Rich. Poor.    (….I could go on for days!)

And we put big value on these labels. Kids are bullied. People are passed over for jobs. Society gossips, whispers and judges. Look at any of the tabloids every week. Our ‘judgement’ is all over the covers. But what gives us the right? Because it’s not the ‘norm’?  Some pretty ‘normal’ people have done some pretty horrible things in our world. Hitler was considered a normal child. I’m sure Jeffrey Dahmer was the baby his father hoped for but that ‘perfect’ label didn’t last long.

 

So let’s take a baby who is a good size, strong, nurses well and is thriving. Didn’t score perfect on the Apgar but after a couple of days is picture perfect…

Now, what if you added Down Syndrome or Autism as a label to this child?  He or she is healthy. Nothing is wrong. A typical child.

Does his/her value instantly become less?

As a parent, you always hope for the ‘perfect, healthy child’ – I guess my question now is how did ‘PERFECT’ become ‘THE SAME’ as everyone else? I look at my daughter today and wonder why was I so devastated when we learn she has Down Syndrome? She’s perfect the way she is. Why would I want her any different? Why did I believe like the greater society that her value is less because of that label?!

I recently learned about Carly, a young girl with Autism, who’s helping to change the face of her ‘Label’. Anyone looking at her would assume she has nothing to contribute to society. That she can’t think for herself. That she has no intelligence. They would think this because of her label and her outward appearance. They would think this and they would be very wrong!

Carly is very smart. She is very capable and she is finding a way to give society a rare glimpse into the body, feelings and senses of an individual with Autism. She is telling the world that just because she has this LABEL and experiences our world differently than the majority, doesn’t make her wrong. Doesn’t make her value less. In fact I believe it makes her that much more valuable!  Just like Amiera.

So who exactly is putting the value on these labels? And, how do we change it?

I sometimes wonder if, in all our intelligence, we’ve missed the point of these wonderful individuals and their labels. I believe, somewhere, there’s a higher presence trying to show us we aren’t the superior beings we believe ourselves to be. We have flaws and if we look at these angels for their value, they can show us a better way to see the world.

Did you really just say that to ME ?!?!?!

So as you all know this blog thing is a new endeavour and I’ve had huge amount of topics that I’ve been trying to “prioritize” in order to decide on what to write next.

And then I started talking to “her”. You know the mom who always has an opinion, who “knows” all the “you should know too” information, the one who’s kids are out of control but who thinks they’re perfect and your child really should learn from them. Ya. “HER“.

Well, this mom, mentioned that she read my first blog post and thought “it’s a great idea”. “I’m sure someone will love hearing your opinions” – with a not so subtle pat on the shoulder and a forced smile to my friend who was standing with us. But then the subject changed ever so slightly so she could offer her “advice” on posting pictures of my kids online. “I hope you’re not going to do that!” was her “question”.

Honestly, it’s been a serious question that has passed though my endless list of things to consider while starting this project, but seeing that I’m a photographer and MOST of my favourite pictures are of my kids I have decided to post some at some point. So I told her that. The conversation went from just that “a conversation” to a full out slap down lecture. She had an opinion on my priorities, my children’s safety and whether my husband knows about my decision because “maybe he needs to be informed”.

REALLY?!?!

You’re going to question my priorities, my children’s well being and the state of my marriage all in a 5 minute conversation?!?!  Uh, ya, NO!

But I can be a polite person. I can bite my tongue …to a point.

So I explained the value of introducing our family to “the world”. We want to show that despite all our challenges we are a “typical family”. I can write all the words in the world but people relate to pictures and I want to engage them. Oh, and yes, my husband knows.

And then… as if the first five minutes hadn’t brought me close enough to the edge….

IT happened…

She looked at Amiera (my little ladybug) and said “oh, well I’m sure it would be safe enough to just put HER picture online but I’d still be worried about your other two.”

ARE YOU KIDDING ME!! DID YOU REALLY JUST SAY THAT TO ME?!?

For those of you who don’t know, Amiera is my five year old daughter and when she was born we were told she has Down Syndrome. I am the founder of our local Down Syndrome Support Group ~ Club 21 – Huron County and I work hard to promote awareness about the diagnosis and how these wonderful people impact our world – FOR THE BETTER!

Now, when she said “I’m sure it would be safe for HER picture”, I just about lost it!

Like, she’s safe because “no one would want her?”

Or she’s safe because “she’s not very cute?”

Or maybe because

“YOU’RE A COMPLETE IDIOT & YOU WOULDN’T WANT HER , SO THEREFORE SHE MUST BE SAFE?!?!?”

Ya, these are the people I face. These are the people my daughter faces. These are the people thousands of others have to deal with on a daily basis.

These are the people I want to teach about Down Syndrome.

Funny thing is, as mad and unforgiving I am, if Amiera understood, she would forgive her “ignorance” in a heartbeat.

That’s just how she is. I’m still learning.

PS: If you are “HER” and for some unknown reason you haven’t already figured it out, you’re opinions are not wanted or required. Thank you.