A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Monday, March 31, 2014

More Summer Camp!

We have been wanting to continue with conductive education for a long time. But differing commitments always prevented us.
But I have kept in contact with the conductors (the instructors and therapists).

When the summer camp schedule came out I was really hoping that we could fit it in. At first glance it looked like we wouldn't be able to make it. And we signed the kids up for regular camp.

But after talking with them about going for part of the camp, and talking with my parents to see about transportation, we were in!

I am so happy that this year we are going to be sending Nick for part of the camp. 10 days of all day camp of conductive education.
Pushing him and being creative, learning how to be independent and being aware of what he can do.

I'm so excited about those days.
Yes it's camp and fun, but it's also therapy.

Nick has also had the opportunity to star in a March of Dimes ad!

I have also found that Nick is a conductive education mascot through another helpful site too! http://www.threetobe.org/our-initiatives/academy-of-conductive-education/

Tuesday, March 25, 2014

Summer Camp and Options

We have such a fantastic time at Easter Seals camp last year that we were very excited to apply for the family camp again this year.
Even talking two other families in trying to get a group of people to go to the same camp. So we applied for Easter Seals camp very soon and just had to wait to see if we had been accepted or not.

 Because the Easter Seals camp is a family camp so it meant that Katheryn and Nickolas got to both be at camp together, both participate in camp activities together, with the same people and just be together. And they also had us there so that we could be support while they could also still have independence.

Unfortunately we found out that Nickolas did not get accepted into Easter Seals Camp for this year. It was disappointing for us. But we also had the opportunity to go one year and there were other families who haven't had that chance. It just lets another family have as much fun as we had.

So now we have to figure out what we're going to do for some kind of camp this year.
Katheryn went to zoo camp in 2012 for the first time, and Nick went to Conductive education camp through the March of Dimes during different times in the summer.
Conductive Education camp was an option that I've been looking into, but shift work and a daily trip into Toronto are also concerns. But Nickolas would be getting some intensive therapy we've been missing for a couple of years.

I went to a Special Needs Recreation Fair last month to see what was available in Durham. A lot of the camps were for kids older than Nick, or with non-physical special needs. So we didn't have a lot of choices. What I was really looking for was some kind of summer sports program (i.e. soccer) that Nick could do in the evening every week. But they didn't have anything like that.

But I did get some ideas of what was out there for day camps. And things that I needed to consider.

Do we send both children to the same camp where Nick may not have the support that he needs. Especially for the catheterization, but that they would be together and they would be doing the same thing and they would be with their peers.

Or do we send Nicholas to Grandview camp where it would not be an issue. He would have fun but he would not be able to be with Katheryn, because she doesn't receive service at Grandview anymore.

I looked at what was offered by the city of Oshawa for kids who were 4 and 6. But even if there is only 18 months between them there were not a lot of camps that would be appropriate for both of them to attend (most of them were age 6+).
There was only one choice that would be appropriate for a 4 and a 6 year old. So we would send them to two separate camps. And if they are already separated we might as well use Grandview camp for Nick's support.

So we signed Katheryn up for Dance Camp, for kids 6 and up and I'm sure that she will have a fantastic time. Nick will go to Grandview camp,  he will have fun and it is will be at the same location as his school. It will help for the two months of not having any school.

I'm a little bit disappointed that they won't actually be at camp together. But it is the same decision we made for school. We won't have to worry about if Nick is having fun or if he is the only one with a physical challenge, I won't have to worry about catheterization and mobility. But I still hate the thought of separating them, even if it is just for one more year.

So this is our plan for camp I have signed them up they're ready to go and for one week in the summer time they will have a lot of fun and for the rest of the time... Still have a lot of fun

Sunday, March 23, 2014

More books

I posted last month about some new books we were reading. I have some other ones to add to the list as well.
Nickolas is in a "I can't" stage, and it really bothers me that he is already thinking he can't do stuff. I can tell him he can, but I thought that reading some stories at night about characters who think they can't could be another way to give him confidence in his ability to do new things.

The Dot is a book I heard about from another lady who was looking at books in the bookstore. It is about a little girl who says that she can't draw. When she makes a dot, and signs it she finds that she really can.
My Silly Feet is about a little girl who wants to race, but she has 'silly feet' and is afraid people will laugh at her. Then she reads about Terry Fox and wants to be brave like him.

Giraffes Can't Dance was a book that was recommended a couple of years ago/about a giraffe who sees everyone else in the jungle dancing, but doesn't think he can because he will look funny.
 I was at a book store looking for a new chapter book for Katheryn (she is soo ready for a big book! She just breezes through all the ones she brings home from school).
And a hockey book caught my eye. With the Olympics and Paralympics over not that long ago Nickolas has been interested in hockey.
This book is all about hockey and hockey plays and tips and tricks for playing hockey. There are 6 books in the series about Puckster who is captain of his hockey team, made up of friends. But what caught my eye was that one of the players plays sledge hockey.
Puckster and The Hockey Sweater is the first in the book and it starts at the outdoor rink and clearing off snow and practicing and raising money to buy hockey sweaters. Everyone player is involved in the book. Manny the moose uses a sledge to play hockey and shovel snow, he uses a wheelchair or sits with everyone else when they aren't playing. There isn't anything special about Manny other than he is a defenceman.
We have 3 of the 6 Puckster books (#1,2,6) I hadn't realized they were numbered... and I have ordered the other 3. It is all Canadian
Nick loves these books.
I haven't talked about Manny the Moose any differently from any of the other characters, Nick likes him because he is a moose just like Tyrone (the Backyardigan).

Sunday, March 16, 2014

Backyardigans Live!

Nickolas still loves the Backyardigans.
So when I found that there was a live show coming to the Toronto area I was immediately online to buy tickets.
While Nick was not very impressed with the paper tickets he received as a Christmas party, he was very excited when the day finally came.
Our tickets were pretty close to the stage.
Nickolas was all ready for the Backyardigans. Wearing his Tyrone shirt, with his Tyrone toy (we left the ears at home) but he also came in with his Tyrone hat.
He got a lot of complements about that hat!
Katheryn is not as impressed with Backyardigans as her brother, but she was still excited to be at a show.
When the show started Nick was just transfixed! We were allowed to take pictures as long as there was no flash. There was singing and dancing and a story line.
All of the songs were from a variety of shows, but fit what was happening in the story. And it wasn't always the right Backyardigan singing the song. (Nick was very indignant when Austin started singing a song that Uniqua was supposed to be singing)
The show lasted about 90 minutes (including a 20 minute intermission).
During the second act, the Backyardigans were in jail and Nick kept holding onto my head and saying "it's time to go now" until the end of the show.
But when we asked him what his favorite part was? He said it was when they were in jail!
All 4 of us had fun!
And of course Nick came home with some souvenirs.
There was some very frustrating aspects (to me, Nick didn't notice) of this trip related to accessibility. But I think I will wait for another post to talk about that.

Saturday, March 8, 2014


The Paralympics started yesterday.
It is getting extensive media coverage on CBC, and I have my PVR all set up!

I have been thinking about how to approach the Paralympics. Do I say, "ooh lets watch all these athletes with disabilities and see how great they are". Or do I say "wow, lets watch the olympics"

I really don't want it to be about the differences. I want it to be about what we are watching.

We talked about the Olympics and favorite sports, all kinds of things that Katheryn could do.
Because no matter how much Nickolas cries and wants to put on ice skates, it is not an appropriate sport. And it breaks my heart to tell Nick that he can't do something. I hate the word can't.

So we look at how he can do what he wants to do.

And the Paralympics show us all of the things that Nickolas has open to him. Every single athlete has a story to share in which they were told they could do anything they wanted, they could show that their different ability did not hold them back.

So we are going to be cheering for our sledge-hockey team. Watch it as a hockey game. Not as an adapted sport, not as a sport to do instead of regular-hockey. Just hockey, with a puck, a net and some ice.


And in my head I want Nick to start sledge hockey when he's old enough. But as a sport that is available for him. Not a different sport, not a special sport, just a sport that is available to do.

Go Canada Go!

Friday, March 7, 2014

Getting around in snowy Canada

We live in Canada.
It snows.

This year may have given us more snow than we've had in a long time, but snow is expected in the winter.

The snow might look really nice and it might be nice to have a snowy winter, but three month snow and snow and snow and get a little tired. If you also add a child who doesn't like the cold and uses a wheelchair and a walker that is difficult navigate in the snow... Then it takes a lot of fun of the winter the end up staying home a lot more than you thought that you would.
Nick doesn't like sitting on the snow or staying still, he gets cold

The picture of Nick inside breaks my  heart a little... But he wanted to go inside, he DOES NOT like the cold. He just wanted his sister to come inside as well.

Even if it hasn't snowed for a couple of days, and thinking of going for a walk outside (even to get to a destination and not drive). This is what you find

Not in front of all the houses, but in front of enough of them. So to walk to the bus-stop (at the top of our street) or go and pick up out mail with Nick, means that we would walk on the road, or drive. Or in the case of going on a short trip with the daycare group - calling a cab (Thanks Jen).
Playing in our backyard? Snow is too deep for any kind of wheels, he can walk with us holding him, or crawl through the snow, or be pulled in a sled.

I know it sounds like I'm complaining. I am.
I really don't mind the snow and the cold. But if I'm working on Nick being independent in whatever form he wants, then the snow does not make it easy.
This is how Nick spends most of his time playing in the snow with us. Sitting down (no wonder he gets cold)

But all the snow comes with accessibility issues.
Parking spots with snow in them (or snow covering the accessible spot so you can't get a chair beside the door), ramps covered in snow or entrances to the ramp not shoveled. Even without snow, there is still ice to worry about. Either the ice that will make Nick slip, or I will slip carrying Nick (always a possibility because I am a klutz).

A lot of our activities have been planned and driven to. We drive to daycare and back every day this winter, even if it is one street over.

There was a quote I heard (that I can't find anywhere) about a father who said he looked out his window every morning to see if his daughter (in a wheelchair) could go outside or not.

It kind of feels like I'm using the snow as an excuse. There are winter things Nick can do. I only need to watch the Paralympics for inspiration. I just need to put the extra effort into finding what works for him.
I'm not really sure what the purpose of this blog post is. Complain about all the snow? Wish for spring and summer? It's March, the snow has to melt sometime right?

He's quiet?!

A lot people tell me how quiet Nickolas is...
How he doesn't raise his voice...

So I took this video to show that he actually does have a life and he does know how to use it.