Coming to terms

Terminology is a weird thing.

Just a couple of words can change the picture that you have in your head about what is going on.

Handicapped
Disabled
Spina Bifida Child

I'm sure there are a ton of terms I can add to this list. But I thought I'd keep it short.
What do these terms all have in common?
What picture does it produce in your head?

What about the more PC terms. The ones we are supposed to be using. The ones everyone is supposed to be using, but sometimes old terminology slips in - because what is the difference?
Let me tell you, there is a big difference.

Accessible
Physically Challenged
Child (born) with spina bifida

What picture do these words produce?

Are these better? Worse?
Words won't change what is happening in our lives, but they can just produce that different picture. That different way of thinking.

That last one is a pet peeve of mine. Spina bifida Child - I don't think so. It does not define my child, it does not rule our life. But yes, my child was born with spina bifida. I know alot of people who still say spina bifida child (and I'm sure I was one of them in the beginning), and I know it is used in articles and online resources all the time.

I probably wouldn't have even noticed until I was the mother saying my child was born with spina bifida.

That being said I do say that I am a spina bifida mommy. Probably because saying that I am a mother who has a child who was born with spina bifida is just so much longer than saying SB Mom.

I recently read a blog with a guest writer who discussed the term physically challenged. I wasn't quite sure how I liked that term. Then I started thinking more about it.
Challenged means there is, well, a challenge. To work for, to overcome, but not be defined by. Challenges are to be faced head-on. I challenge you! I started liking this term so much better.
Alot better than dis-ability, like Nickolas does not have the ability to do whatever. End of story.

Special needs is another term that I'm a little wishy-washy about. It's pretty vague and brings to mind images that aren't necessarily true.
And handicapped just brings to mind old people and metal bracing and sick people. Again, that word capped, as in you have reached your limit. Do not pass go.

Handi-caple just rubs me the wrong way. It just reminds me of handicapped with a politically correct twist.

So that is my two-cents about me coming to terms.

What's new?

Last family day we had some big accomplishments - STANDING!

I will always, always have a special place in my heart for this holiday!

This family day we are a little lower-keyed. Just so much has happened in the past year! We were just beginning to stand then, now we are walking with the walker (or holding hands), wheeling with a chair (calmly), climbing up stairs..

... and our newest accomplishment (and something I had as a goal for physio) climbing down stairs!

I'm not too sure if this is a good thing or not.

Yes it is. I know it is.
Nick can climb up those stairs like it's nothing. I turn around and he's upstairs getting into trouble with his sister. Then she comes downstairs for something, and there he is at the top of the stairs crying for help.
So we've worked on giving him the knowledge and ability to get down the stairs himself.
The slow way.

He's already learned the fast way - and got a black eye and some scared parents in the process.
He'll still start to go down head first, and then we have to remind him to turn around and go down bum first. I imagine it is difficult for him. He can't see, can't feel when his foot is on the step and yet he still does it.

His language is also our greatest challenge.
Sometimes I think Nick is joking and other times I wonder.
Does he know his colours? Is he screwing with me?
He still calls everything blue. Does he thinking everything is the colour blue?
No means yes. What about counting?
We've been working on counting 1-10, sometimes I think he gets it. Other times I'm not sure. Again, he gets stuck on some numbers. Calls everything four, six. And smiles that little smile of his!

But like looking back at last family day. And look at us now, I need to look back at 6 months ago, even 3 months ago! Nick wasn't saying anything last summer. He was making the motions with the supportive walker. Not even close to taking independent steps!
And no words. No mommy, (Or ma, as he's saying now).

So this family day I want to sit back and watch my family be together. And be amazed at just where we are now.
Tomorrow I can worry about something else!

My favorite kind of Valentine!

More Zoo!

The Toronto zoo is one of my favorite places to take the kids.

We have a season pass, and I could fill my blog with all the trips to the zoo!
I always think that I won't take very many pictures this time around. And then I end up just click, click, clicking, and  somehow I took 140 pictures!

I like taking pictures of the animals
I love taking pictures of the kids
And I really love taking pictures of the awe of the kids looking at the animals.

This time around we went for something special.

The new baby polar bear

It was pretty cute, but Nick had a hard time getting close to it in his wheelchair. And people crowded around the area to get close. Katheryn was more interested in the movie about the polar bear that was playing in the tv nearby anways. But the bear was pretty cute!

The animals were pretty active. The polar bears and wolves were actually running around.
So we got to see alot of action when we were going through our polar bear route.

We always start with the polar bears, and then go through our regular routine: Polar bear, pizza, penguins.

The pizza and penguins are at the top of a hill.
So we even get our exercise!

The pizza revives everyone enough to be silly!
(I LOVE this picture)

And Katheryn gets a chance to climb on some rocks. Climbing is her favorite!

Photo op time!

It was too cold outside for the penguins so they were inside. But Katheryn and Nick didn't really care.
They pressed themselves up right against the glass to get as close as they could.

See those 2 penuins looking at the wall.

When I wasn't taking pictures the light was flashing off the lens and projecting against the wall. And like cats with a lazer pointer...
The penguins kept watching the wall and chasing the light (I didn't realize I was doing it). I couldn't figure out why the 2 penguins were looking at the wall like that.
Kyle told me what they were doing.
But we did more than just look at the animals.

Katheryn loves racing.
Everywhere it is race, race, race, race, race.
She used to be a bad sport. If she won it was 'go me, go me' (complete with dancing).
We tried to teach her that she doesn't win every time. She used to get really upset if she lost.
Now she says 'we both won'.
Nice open paths, not that many people. Perfect place for races!


We went to an exhibit we usually miss. I haven't actually been in the Rainforest exhibit in years (I acutally forgot it was there, we usually do a loop that just misses it). It had animals that the kids haven't seen before!
With Gorilla's!!

And turtles that you can press your nose right up against!

The fish were a favorite. And of course an oppurtunity to practice standing.

How can you not love that look of awe in those eyes.
Watching all of those fish swim around, so close you can almost touch them!

I remember when we first got the spina bifida diagnosis. I remember all of the thoughts and worries that went through my head. That are so silly now, but were real at the time.

Like will Nick be able to swim in the lake? Will he be able to play with Katheryn? Will they have fun together?

Spina bifida is always close to the surface - but sometimes it is thoughts like this. The joy I see when I look at my kids. The love, the laughter, the jouney together.

OK enough of that kind of talk, back to the zoo.
I think we get a couple of looks becasue Nick is in a wheelchair. And I used to think that I would care. But I'm too busy watching Nick explore like he was never able to in a stroller. To push and move himself right where he wants to go!

These little guys (lemurs) come so close!
They scared Nick at first, becasue he didn't realize that there was glass there.

On the way out we stopped for a quick photo!
(Katheryn just wanted to get home.)

And Nick had  alot of fun rolling super fast (with daddy) down the hill!

At the end of the day we had an adventure girl who had alot of fun! and was really good at letting mommy snap alot of pictures.

And one very sleepy little boy!

That was one fun, family adventure!

Can I have a word? Or 3 or 4?

Who needs speech therapy?!
We're doing all the work at home!
It's only been 10 days since I took the last video and already I can notice the difference between how Nick talks then and now!

And in case you don't get what he's saying...
He has started to play a game, he hides his hand and says "where is it?" then when it uncovers "there it is".
Nick is also using 3+ words in a sentence!
And he really loves talking. I could take videos all day, every day!

It just gives Nick an opportunity to clown around some more!