The title of this post might seem like a metaphor.
But it is not.
What I mean is DO NOT physically lift your legs and step over my son and his walker to get by him.
Might seem like common sense right?
If not common sense, then a reasonable expectation of a polite society?
You don't push people out of the way, you don't kick puppies and you don't step over a child who is using his walker in a doorway, or anywhere for that matter.
Yeah he's about 3 feet tall, he's kind of quiet and he pulls around a red walker, but he is very good at maneuvering it in doorways and in the parking lot. And you can take an extra second out of your time to let him go by.
Let me be clear.
You DO NOT step over him
In the last weeks I saw 2 people do this to Nick.
One was a teenager and Nick was trying to get out a door and his walker was at an angle as he was going through the door. This teenager just stepped right over him and the walker in the doorway. OK, teenagers are rude, it was a one-off. Kyle and I talked about (and felt really old discussing teenagers these days)
The second one was an old man. Nick was walking through a parking lot and was going beside our car, this old man (who I thought had parked beside us and was going to his car) went into the space between our cars and then just stepped over Nick and his walker and kept going.
I was too far away to do anything but fume. And fume, and think about it, and get mad. And now decide that we need to do something.
Some people are rude, some people don't have any common sense, and some people are not aware of what is going on around them (and don't care).
But this is different.
This is putting my child in danger. When you step over a child who is pulling a walker that keeps him upright you are putting him in danger. What if his moves the walker, what if your foot gets caught on part of the walker, then you lose your balance and you fall on my son, and he falls down. And gets hurt, or gets scared, or looses confidence in his ability to walk with his walker.
This is the size of the walker these people are stepping over
I don't really care if you are 15 years old or 95 years old. You DO NOT step over a child, he has every right to be in the space that he is in. If he is in that space, then you are not.
So we sat down and talked about what happened. Nick noticed both occurrences, but didn't really think anything about it. I told him that what these people did was wrong and it was dangerous to him. If anyone does this again to tell them (loudly) to stop.
We will also keep an eye out if this happens again and actually stop and tell these people that this is not right.
I think some large spikes at the back of the walker might be the next step to get the point across...
We had a therapist meeting with all of the T's at Campbell's (OT/PT/ST). It is an opportunity for Kyle and I to get together with everyone (including social work) to discuss what has been going on through the year and plan for the future.
The meeting went well, but he has made such huge progress in all areas that I wanted to focus on each of them. One of the hugest gains is not necessarily in his ability but is in his attitude towards therapy. It also gives us different perspective from the information we receive at the spina bifida clinic at Bloorview (and it makes me miss PT Kim and her experience).
To realize how far Nick has come in physiotherapy, I wanted to take a trip down memory lane regarding where we have been in our journey.
This is a little boy who has been doing physiotherapy since he was 4 months old. And not really liking it... at all
This was the child that some physiotherapy sessions I really wondered if we were doing the right thing by pushing him so hard. And we saw progress (slowly)
But it came... when he wanted it too.
(I just realized there is about 3 months between these pictures (Feb 2011/May 2011) and he's wearing the same pants!)
We had some sessions where he screamed and cried for the entire hour! And not just once, every... single... time. And we followed through, and didn't give up. I pushed for what I thought needed to be pushed for, even if he didn't really want it.
And his walker is a prime example (July 2011)
It took a lot of trial and error to find something that worked for him (this is walker #4 that we trialed in January 2012).
I've continued to help to push Nick through different mobility aids. I think we went through 3 1/2 years of therapy with tears shed at every single session. His stubbornness shining through.
And I have seen Nick realize what his ability and mobility is. With this realization came a change in his level of stubbornness. His energy spent working against us changed.
I have seen Nick transition to actually wanting to do things by himself. And realizing that he can.
This summer, balance and standing has become a game with him. Nick wants to practice his balance all by himself, to show off what he can do. To want to walk and push himself. Phsyiotherapy has moved away from goals and directives that I want, to goals and directive that Nick wants. And the change has happened.
"Look at me" (July 2014)
That doesn't mean we haven't continued to push him. Looking for ways to challenge him and work within our way of life. We've gone through using canes, which we started July 2013. Nick even walked during the graduation ceremony with his quad canes last June 2014.
Which of course meant that is was time to challenge him again
And again with some crutches that I bought in August 2013. And hadn't used with any success for over a year.
But Physiotherapy at Campbell's have really listened to me this year and have been working with him with the crutches. Really working with him, or I should say he has really been working with them.
So lets go back to our meeting this week. His physiotherapist Corrie, said what a pleasure he is to work with.
What?! This is the same kid? The one we've just been talking about? No crying, or fighting or being subborn? Actually doing new things?! Wow. I would never have believed years ago that the child who just turned his face red and couldn't catch his breath from crying so hard during physio would be a pleasure to work with.
And I am so beyond happy!
With this new kid they can challenge him without the fight. And he can really show off and learn what he is capable of.
They have moved onto the crutches. (Not the best picture I know).
A fall spent working with the crutches let Nick work hard on something. And then show off what he could do.
This past Christmas concert (that I missed and couldn't get the time off for) was the opportunity to showcase how all of the kids were progressing. Not just all of the kids but Nick especially. They changed the Christmas concert around to show off Nick and his crutches!
A group of kids (I think their Wild-Wheelers group) came in during the sing along of Rudolf the Red-nosed Reindeer. Nick was the last one in during the song...
And he really showed off! My parents went to video tape everything for me. For the video I took out the background noise, and the other kids
THIS is all I need to know about how Nick is doing!
He is doing something different, working and trying. He has come a long way!
This has come at a time when physiotherapy has become a challenge for me as well. The hope that I had years ago that Nick would be a functional walker (without assistance) has disappeared as he has been identified as having L3 function by PT at Bloorview. I have written a number of times about my feelings about this label.
I have been feeling that physiotherapy has all been very negative for us for a while. And to take the time to look at how far we have been and where we are right now has helped to put everything into persepctive.
Physio at Bloorview during out clinic visits have revolved around hips and glutes and extenders and stuff like that. I try to get it, I really, really do. I have the charts and the muscle groups and the rating scales. But I really need the reports to understand it all. And while we are trying to look into the future to try to plan. And while Physiotherapy expectations play a huge role in that, it isn't what physiotherapy is about.
Physiotherapy at Campbell's has been all about hope and work and showing off how far we have come, working towards a goal.
When it was time to come up with our Halloween costume this year, Nick was very specific about what he wanted to be this year.
Ninja Turtles!
And also that he wanted to go trick-or-treating in his walker.
So then came the planning.
And of course it had to be some kind of waterproof alternative that I could paint and stick together.
We had all of these floor mats available, The bottom side provided a smoother surface that I can paint. The mats fit together, can be taped and glued, cut and painted. And waterproof!
The shellraiser (the new-age turtle van) is actually a subway car. So we needed some subway doors and windows.
The windows are actually boarded up. So I got some wood-looking foam that I glued in place over the windows. And the green roof is taped in place.
The design is the show combined with the toys to get an idea of what I should
The back of the shellraiser has blue rockets and some kind of red bumper at the back. The Shellraiser sign is on the back too. And the back of the walker helps to keep it in place.
After putting it together I wanted to make sure I got the grafitti right. I practiced on some spare pieces to use my spray paint right, because I only had the one chance.
Purple, red, orange and blue graffitti, and of course 'Turtle Power' on one side, and 'TMNT' on the other side. I outlined the words to make it stand out more. We added a marshmallow shooter gun, and a roller-bumper in the front.
Nick-angelo loves it!
If you know Ninja Turtles and Michaelangelo in specific you may know that he is the party dude that also yells out "Cowabunga", in the 80's show, and "Booyagasha" in the current show. Nick likes both of them, so I added something in the front of the shellraiser to make it look more like a van/subway care.
We have had a plan for Halloween since the summer.
Nickolas has had a very specific request.
He wants to be Tyrone from the Backyardigans
So my mind started thinking about what I wanted to do.
First I prices out off-the-rack costumes.
I didn't like them
So I looked for how to make them.
Got my pieces back in July
But now it is 1 week to Halloween, and I have to put these plans into action.
We have 2 costumes to make.
A walker backyard, and a wheelchair backyard, with Tyrone in the middle.
I needed to make sure I had the right inspiration.
I made some quick drawings to see how it would show up.
It's very important for everything to be waterproof.
I don't want to do something in paper and then have it all dissolve in the rain/snow, or not use it because it would.
I added 2 other houses for the walker (yellow and purple) which aren't in the original picture
So I have plastic plates to use for the walker-houses (draft versions above)
Then foam for the houses for the larger wheelchair-houses.
I'm going to put it all together this weekend.
I am a little nervous that it is going to flop...
Katheryn is going to be a super-hero, and her costume is all done.
I was going to add some embellishments to her, but I pulled it out yesterday and I think I might just make it worse. But I'll do something for her... Maybe some wrist cuffs?
We have a family filled Easter planned for this year. Katheryn and Nickolas are both a good age to enjoy it!
Friday was spent with Kyle's family.
We started with some good ole-fashioned egg decorating!
Both kids concentrated so hard in putting the right stickers on, and Nick wanted to make sure that there was no egg left behind
And then it was eating time
There was lots of fun for the day. Like decorating some cookies (while mommy hid eggs around the backyard).
I can't tell if Nick looks younger or older in this picture?
It took us forever to get Nick smiling - he loves to squint and smile at the same time, or hold his smile up!
The the Hunting began!
The girls (at least Katheryn) tore through the area, taking all the eggs in her path. Like an egg-tornado!
I was behind her saying, no Katheryn, leave the easy ones for the boys! Go farther back!
I eventually came to my senses and realized that it was important for both kids to have fun, and not just help Nickolas to find eggs. And Nick had help to find the super-low, and the super-high eggs that tornado-Katheryn missed.
All kids got to fill their basket with eggs, and have fun!
And we had a group of very happy hunters!
I even got them to both look at me and smile at the same time!
(Notice Nick's squinty-eye smile)
One of the that came out of the NDT classes was that Nickolas is leaning forward in his walker. And we don't want him to lean, we want him to stand up straight when he walks.
On my ever growing list of things to follow up on...
Have the walker adjusted so that he stands farther up, so that he doesn't have to reach farther forward.
Luckily when we were at the bike fair yesterday we got Bill from Durham Medical to make the adjustments (no problem, he had all the tools there - AND he made the adjustments to Nick's wheelchair as well!)
So much better!
Nick is doing great standing up straight. His favorite thing to do is to balance against the couch, the tilt forward so he is standing all by himself!
7 seconds!
Who knew that this doll house would have been so great at getting Nickolas standing, and playing together with his sister.
Katheryn of course is working on her balance as well!
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