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!

Tuesday, April 10, 2012

A story of a wheelchair

  Nickolas got his set of wheels this week.

It is orange, and is brand new. It has brakes that work, spolk covers, higher sides so Nick doesn’t’ slouch and stroller handles. It also has cable ties or something for riding in the bus (I'm not quite there yet - but we're still looking at 2 years before we get there).

Nickolas wasn't too sure about what was going on at first.

I personally thought it was so cool to see with without the wheels on!
The orange looks more red in the picture. But the colour is great!

Nickolas and I had a whole conversation about his new wheelchair.
I told him that we were picking up his new orange wheelchair.
"No blue"
"No orange"
Reaching down to touch the blue loaner chair "No blue"
"Well, tough honey, your new chair is orange"
(But your walker can be blue)

A little bit of blackberry distraction while they made some final adjustments.

Nickolas quickly found the joy in bouncing hi wheelchair off of his father.

Mommy, I'm going to get your next!

And we were done.
On our way home with Nick's very own wheelchair!

I was so excited!
Kyle was so exicted that it had a tall stroller handle that was easier on his back!
I never thought I would be this excited with our very own wheelchair.

On the day of Katheryn's party we decided to bring it into the house to show everyone how he is using it.
Nick ha rediscovered his Build a Bear in the wheelchair - he's always moving it in and out and wanted to play with it while he was in his chair.

The weekend was so busy (Easter, birthdays, birthday parties and family dinners) we didn’t get a chance to take the chair out anywhere. So I was OK with it being in the house quickly during the party.
We didn’t go anywhere Sunday (stayed at home with easter eggs and chocolate) and both Nickolas and Katheryn wanted to roll around in the chair.

Kyle and I talked about letting Katheryn use the chair. I didn't want her to see it as a toy, Kyle thought it would be a good idea for Nickolas to see Katheryn in the chair, that it was fun to use and how to use it, that it will move without anyone elses help.

Kyle's reasoning won out - he was right (yes that is now in the permanent blog record).

I’m not sure how I feel about having the chair in the house.
OK I lied. I do know how I feel about having the wheelchair in the house. It is one thing to have Nickolas at 2 years old be in a wheelchair when we are out in public – it’s a stroller replacement, it is his tool for independence, when we are out of the house.

In the house he is looking at independence another way. We are working on his walking, using his walker. I don’t want him using his wheelchair instead of walking with his walker, or even holding our hands.

Even though Nickolas using the wheelchair in the house gives me a heavy heart, I can see how it has provided an opportunity for Nickolas to get to know his chair. In a way that he can’t when we are out and aobut and have tasks to do. When we don’t have the time for him to explore. And when I am right there.

In the house he has freedom, in the house he has time and opportunity to explore his abilities in the chair. It doesn’t hurt when it gives Nickolas a vantage point that he hasn’t had before. The opportunity to get into more trouble.

He enjoys it.
I hope not too much, because that sucker went back into the car this morning.
But I love to see the look on his face as he realzies the full potential of what being in a wheelchair gives to him.


  1. Hmm, interesting. I wouldn't have thought to not let him use the wheelchair in the house, that seems a bit backward. It's a way to facilitate his learning/exploration/curiosity on a different level, so I would probably want him to have access to it in his home, not just out in public.

    I'll have to think about that more. My 7th child has SB among other things and he'll need a wheelchair for sure, but he's only 3 months old, so it's a ways off. I'll definitely need to think about it more - thanks!

  2. Nice wheels, Nickolas! And I love your build-a-bear! I can relate so much to your post, Amanda. My boys got their chairs at 18 months (they're 3 now), and they love being in them and have gotten pretty good with them. I have trouble with the wheelchairs at home, though -- one, there isn't enough open space for both to maneuver; two, we have carpet in the bedrooms for now; three, because they need to be in their standers or crawling to build strength; and four, our dining table hits them at eye level, not ideal. So, I leave the chairs at school. I know there will come a point where we can't pick them up and move them around easily OR that they just insist on having their wheelchairs, but until then, we try to strike a balance.

  3. Great color!! And what a beautiful smile he has!

  4. King doesn't use his wheelchair in the house at all. It is too big (hence, moving!) and it's hard for him to get around. He does amazing in his Bumbobile, which is a lot smaller and lighter. He can get over carpet just fine in it, but the big wheels are heavier and bigger so carpets become a challenge. I know that when he's older, he'll be a million times stronger and he'll be just fine wherever. When we first got it, he did have a go around the house and like you said, it was cool for him to get that new vantage point. But he prefers to crawl or have his bumbo (which he just pops himself out of when he's bored of it!) which give him more true independence. Too much of life for a 2yo is still so much lower than chair height.

    I'm rambling! YAY NICK!! The wheels look awesome. :)

    And I am equally torn on the others-touching-the-chair issue. I'm training the girls/friends that when he's in it HANDS OFF bc pushing it is like pushing him - a total no-no. But I'm kind of okay with other kids sitting in it when he's not as long as they don't treat it like a toy. It's good to let them see it's not taboo or scary, I think? But not a toy.

  5. Great post. A good timing for me to read it, when i have just started my blog a couple of days before. Keep sharing the tips :)
    Fighter C Wheelchair
    Keep Posting:)