"I'm not a baby"

I overhead a conversation between Katheryn and Nickolas this morning.

Nick was saying "I'm not a baby, I'm a big boy"
And Katheryn is saying "I am a big girl, you are a little boy"
And there was crying and pushing and parental intervention.

I was talking to Katheryn about it afterwards. "Katheryn, why are you saying that Nick is a little boy. Both of you are the same size?"
"Well, I walk and Nick crawls, that is why he is a little boy and I'm bigger."

So this is it. A conversation.
Not the conversation because we have talked about spina bifida and what it means a lot of different times. It should not be a new concept for either of the kids.
But we have heard it about diapers and we have heard it about crawling.
I don't want Katheryn to feel that she is getting in trouble for saying it, I don't want Nick to feel that we aren't standing up for him. I want both of my kids to feel that we are just explaining something to them. Like why you don't go to school on Saturday. Why broccoli really is yummy with cheese. Or where to put the extra pirate if you run out of hands...

We've ready books, we've sat down together and talked, we've had spontaneous talks and I've answered questions, if they have them, until either kid get distracted.

I'm not sure if I'm doing it right. I'm not sure if Katheryn feels that she gets in trouble and then has to hear a lecture about Nickolas. I hope that isn't what I'm doing.

So today we sat in the bathroom - where we have a number of our conversations - while Nick is on the potty, and talked about why Nick is not a little boy, he is big just like Katheryn.

 This is how our conversation went:

A: "Katheryn, you are Nick are both the same size, why are you calling him a little boy?"
K: "Because he doesn't walk, and crawls on the floor", I pull Katheryn into my lap so she can listen to me
A: "But Nick walks with his walker. That is walking. Do you remember we talked about when Nick was born he had a boo-boo on his back"
N: "I did?!" (he says this every time we talk about it)
A: "And because he was born with the boo boo he needs extra help walking, and has his walker"
N: "Yeah!" (from the peanut gallery)
K: "OK, but I don't need help walking"
A: "No, you didn't have a boo boo on your back when you were born. But Nick did and so he has to work harder for things."
N: "I had a boo boo on my back"
A: "Yes Nick, and your boo boo was fixed"
N: "At the hopp-ital. Did you fix it?"
A: "No,  a very special doctor fixed it when you were born"
A: "Do you remember what it is called, spina bifida"
K: "OK, can I brush my teeth now?"

And that was it.
Until the next time.

I'm not sure how the conversation went, or how much will stick. Katheryn has watched the video that I made for spina bifida awareness month and saw the diagram of the baby with the lesion and asked if that is what Nickolas had when he was born. I'm not sure if it grossed her out, or helped her to understand.

Monkey

We have a climbing monkey on our hands!

Nickolas has found a new favorite place to play.

He is so proud of himself!

He has wanted to be up on the back of the couch for a long time. But we have told him that if he can't get up himself there, he can't go up.

So now that he can climb up onto the top of the couch by himself, he would spend all day up there if he could.

 



 

He hasn't gotten crazy enough to jump down yet. But I'm sure we will see it.

I suppose if we were going to tell the kids not to climb on the couch, we should have started a while ago...





 

Getting ready for school

 We had our meet the school day!

We got a bunch of papers and a whole binder for us to all get ready for school

 

 

And not only was it a school binder, with all of the information. But it was actually made for each kid. Or at least the cover was.



 

And inside there was a bunch of information.
All neatly organized!

I will admit that I haven't actually read the material. That is what September 1st is for, right?!
There is a section for parents, reports, therapy programs, pictures, tip sheets and a whole portion for 'All about me'
These are just some of the pages from that section.

Sending your child to school, I worry that they are away from me, on their own and potentially (because you aren't there and never know) with someone who just sees them as a number, part of their day, their job.
But for the entire time we were there, and looking over the material we received, I just didn't get that.
And I'm not worried about sending Nick to school in September.

There is a little booklet that is all about Campbells, with pictures of everyone. This is my teacher... my physiotherapist... my occupational therapist... ect, these are the people that help in my class... With pictures of everyone and names.
(Perfect for a mommy that is horrible with names)

We also got to see what the classroom looks like

At first Nick was very shy and wouldn't say anything.

His teacher and some of the assistants were there and kept talking to him and he sat there with his mouth shut.

They talked about parts of the class, including the half circle desk, where they sit and talking and do crafts and eat lunch.

 

Well Nick walks right over in his walker, then cruises along until he is in the middle. Asks daddy for a chair and says "Where is the food?"

 

 

 

And his shy-ness was over.

He even got to draw a little bit before it was time to go.

 

 

Campbell's is actually in Grandview children's centre, so Nick is used to walking the halls. But he hadn't been in any of the classrooms before. I think they only have 4 classrooms. 

 

 I missed the first 20 minutes, but they had a presentation and went over some stuff (Kyle was there, I hope he paid attention) and each kid got a name tag with a coloured dot on it.
So as we went around the school, other kids had name tags on it with stickers, and the kids with the yellow stickers were going to be in Nick's class with him.

It also gave us the opportunity to meet other parents.

Kind of. The kids come by their shyness honestly, we are not the most out spoken and social people. We didn't approach other parents, just kind of stayed within our own bubble. But did meet some very nice and outgoing parents.

 

 

 The thing that I cared most about was the bus.

How will it work, what time is pick-up. Get Nick on the bus and excited that he is going to be taking a school bus!

 

 

They had a lift, which was loud and bothered Nick a bit. And so I carried/walked with Nick up the bus so he could sit and look around. He did really well going up the steps himself and lifting his feet. But once we got on the bus, he was kind of blah about it.

I guess it's a bus just sitting in the parking lot. Not very exciting.

 

 

 

I didn't realize, but probably should have realized a couple of different things about the bus. 

He can't take his walker on the lift, it is only for wheelchairs. And he isn't 40lbs yet and would have to be in a carseat on the bus if he isn't in his chair.

We have the pick-up all organized about where, and found out probably when, but was told that by September the time will probably change.

And we have to think a little about what will be going to school with him.

 

I had thought he would primarily be using his walker to go to school, play at school, walk around school. Pretty much use the walker the entire day. And on days that they are going for neighborhood walks or some kind of trip he would have his wheelchair sent to school with him.

But now it looks like he needs his wheelchair on the bus.

So he'll be going in his wheelchair and taking his walker every day to and from school.

At least for the start of school (they said they try to get school-equipment so that he doesn't have to travel with his walker).

 

I guess that is one of the things that will work itself out (or not).

But so far I feel that we are pretty ready for school.

 

(Except I forgot to ask about cathing the whole time we were there - who/how/when). I guess I'll have to call to make sure that is set up.

 

3 months or so before school starts.

I'm a little nervous. But feel very prepared.

Wanting to ride

Nickolas wants to ride a bike.
He wants to be a big boy and do big boy things.

Katheryn likes riding her bike to get the mail when I get home.
She is so excited to get on her bike, and Nickolas gets excited to.

But he doesn't have a bike. Not really.

When I said he didn't have a bike, he got so upset.
Screw up your face, tears streaming and pathetically asking why...
And that was just me!
But seriously, he just broke my heart.

We brought him one time in his chair, trying to encourage him to move himself around in his chair more effectively. He still wanted a bike.

We pulled out the toddler bike he has had for the last 2 years.
He doesn't really fit in it.
It has plastic wheels

It's difficult for me to steer
He isn't able to actually pedal to move, he is fighting to keep his feet on the pedals to begin with.
He actually did keep his feet on the pedals significantly longer than I had expected.
But we spent more time readjusting his feet than enjoying the 'bike ride'.
It comes with a seat belt that kept him from falling off. But we had to readjust Nick's hips a bunch of times because he lost his balance and was off-centred.

The toddler bike is not working for us.
But Nick is riding a bike.
I thought about taping his feet onto the pedals.

Or trying to make a holder for his foot with the tape.

It didn't work. It lasted about half way to the mailbox.

Nickolas is happy about it.
He is happy the be riding a bike like  a big boy.
He is happy to be outside and playing with the other kids.
He doesn't know he's in a  baby bike.
But I know.

I want him to be in something that is appropriate.

We were very excited when we went to the bike fair in March.
Then we were on a break from physiotherapy, we weren't quite sure what we could look at for funding, and what we could afford. We asked social work for help and they gave us a list, we asked physiotherapy for help and we got a list and a letter to submit. But I'm pretty sure the only organization we qualify for, we used for conductive education last year.
And we kept putting it off. It's not like it is thousands of dollars, we could probably scrounge around our accounts for the $600 for the bike. It's just that it is $600 for a bike. And it was still rainy and cold and not bike weather.
But now it is, and we don't have a bike.
I feel like a horrible mom that we made the effort and then fizzled and didn't follow through.

I haven't stopped looking for the things that would make riding a bike easier. in April the fatwheels company came back  into business. ($99 for the wheels, $30 for shipping to Canada - shaves $80 off the original price). But we have done lots of online shopping and looking, but haven't actually done anything about it.

It has to move to the top of my to-do list!

Our Fourth SWWR

I can't believe that this will be the 4th time we have had a group of family and friends come out to walk with us. To take the time to show their support, and to care, really care about raising awareness about spina bifida.

Our walk this week is going to be Sunday June 23rd and will repeat our walk from last year along the Oshawa Lakeshore.

Pamphlet - SWRR 2013 by Amanda Ridding

Over the last 4 years we have gathered for a weekend in June, in rain and shine, hot and cold. But we have gathered and we have walked. Even years that walking was not an option for everyone, they still came out to cheer us on. To cheer Nick on.
And Nick's Cheering Squad is still going strong.

2012

 

2011

2010

So this year we are going forward with another Spirit Wheel Walk Run.
If you are interested in support us this year you can make online donations at

http://www.canadahelps.org/CharityProfilePage.aspx?CharityID=s10136

Click on 'donate now'
Enter donation amount
Choose the 'Fund/Designation'
Pick SWWR- Nick's Cheering Squad (Ridding Family) from the list.

Thank you!
If you are interested in joining us this year, we will be meeting at the beach of Lakeview Park, Oshawa. Picnic to follow.