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.

Paralympics

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.

http://www.paralympic.ca/sledge-hockey

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!

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.

School News

Nicholas has a fantastic time in his Campbell school.
He has best friend, he has a girlfriend, he has a boyfriend. He talks about his friends all day, everyday. He wants to invite friends over, to the cottage, in the summer... Whatever we are doing he wants to have his friends along.
When he's home from school he talks about his bus drive. What his bus driver did, what they saw, what songs they sang.
We have beans so happy about his experience at school.

 

It is not just the social aspect of the school. Nick is learning so much!
He can read books (with a lot of encouragement), he writes name, he spells his name (all the time). He wants to use his walker (but not his wheelchair - which he mainly just uses on the bus) and move. He wants to be independent.  In the house there isn't a lot of room for his walker, so Nickolas has be improvising, pushing a chair around the house.

He sings songs, he plays and learns and talks about what he learns.
He needs to work on his letters, so we got him a tablet. When I talked with his OT they said we need to work on his pencil grip, so we bought a big crayon for his tablet. Works great!

Campbell's school has been a great experience for him (and us) I haven't been worried about what he is doing in school, what resources he has and what support he needs.

In January we reapplied for Senior Kindergarten at Campbell's, but we also had to register him for his home school. So I got all of the papers to fill out, and put them in my bag... for a couple of weeks. I always meant to fill them out, but I had already missed the original deadline, so I kept delaying. Hoping we would get accepted into Campbell's again, and wouldn't need to register him.

Luckily we found out he's going back to Campbell's! Now I have another year of breathing room. Another year of therapy in school and school routine and learning in a small environment before he is in the 'real world'

One year before worrying about large class sizes, how he will move around the classroom and through the halls. One year to figure out and get him out of diapers, and catheterizing and EA's. Wondering and worrying about how accessible the playground is, what we need to inform the teachers, how to optimize his learning. One more year to figure out therapies and appointments and what we need and when.

School is going great! Nick is having a great time and learning so much!