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.

Spreading Awareness

June is Spina Bifida awareness month in Canada.

I had some co-workers suggest putting together something quick to educate everyone about spina bifida.
So this is what I put together.
5 minutes to balance education and the scary medical information, with what that actually looks like.


Yes spina bifida has diagrams and long words and scary pictures.

But what is really important is the sound of laughter and the look on your child's face when they look at you, and the sound of their voice they tell you they love you.

Symbolic

There is a new icon out there.

We have all seen this symbol.

 

Everyone knows what this symbol means.
They might call it by different names and terminology. You (might) say handicap sign, I say accessible sign. 

What does the above icon say to you. Everyone knows it, has seen it before and may never have thought twice about what it actually says to you. It is a very stagnant picture, passive. Someone sitting there to be moved and helped by others.

Now what does it say to you when you look at the icon below?
Does it say handicapped? Is it passive?



 

This icon was a project that was developed to transform that international and traditional symbol of access. It started as a research study at Gordon College in the US, and has been in the news recently. There is a site called The Accessible Icon Project to raise awareness and promote this new version of a traditional icon.

A lot of thought went into the icon. How/Why is every part of the symbol the way it is?
The head position, the arm angle, the wheels all to promote forward motion and activity. The idea that it is accessibility that is the issue and the purpose of this symbol; and not that it is because the wheelchair user (or the person who has the placard and uses it) has a disability/challenge.

Take a look at the website (if you are interested). They sell stickers to go over traditional parking lot signs as well as stencils for the  parking lot. I think it's a fantastic idea and would like to bring it to my own neighborhood and workplace!

Long weekend fun!

It was a fun weekend for everyone

Including the furry-family

But I think everyone was tired - except for the kids

 They kept going and going and going

Stopping for a quick refuel - and yes Nick would have eventually made it through the whole bowl.

Hopefully this is the sign of the fun to come this summer!