Walking to school

Nick wanted to walk to the bus stop today with his backpack

He did it the whole way to Katheryn's bus stop.
He is getting stronger with his crutches.

I don't think he is as strong/stable as he was when he took his first steps. But that is something we are working on. A part of me thinks he might never be able to do this again. I had hoped after the surgery we would be back to that point quickly. But we aren't.
And if he doesn't get back to taking independent steps it will make me sad, but it isn't the end of the world. He is stronger with his crutches. Especially with the higher braces on (which I don't hate as much as I used to). And on the weekends we take the tops of his braces and he is still able to walk with his crutches, but he is a little floppier.

Oops, I just hijacked a post about walking to school...

Last week while we were waiting for Katheryn's bus Nick wanted to get out of his chair and practice standing. When the bus pulled up I could hear a lot of the kids in the bus cheering for Nick (a bunch of kids in his class are on Katheryn's bus). And Katheryn got off and yelled "He does that at home!"
Nick was so proud of himself.
And if that is what he wants to do, then go for it boy!

Today he wanted to walk and run to the bus. So he did.

Yesterday coming home he wanted to be in his chair and his crutches.
I thought it was weird, but whatever. But then I realized that Katheryn and Nick were playing sledge hockey, and Nick was pushing himself in his 'sledge' while Katheryn was the coach

 They went the whole way from Jenn's to our house like that.
Now it just needs to translate on the ice!

It’s not you, it’s me…

Read this first. My Association wants to Change... about how the Spina Bifida and Hydrocephalus Association wanted to change to Hydrocephalus Canada...

It's not you, it's me...

That is how it feels. Like I have been dumped. Actually worse, like my son, my family has been dumped. Because of spina bifida.

Because it is not a ‘hot’ disability anymore?

Because there are people more important?

Because supporting him is too costly, or doesn't make enough money?

Because, because, because!

I am so upset. And angry.

The motion that I wrote about last month was passed. So my organization, the Spina Bifida and Hydrocephalus Association of Ontario, will transition into Hydrocephalus Canada. With a national, hydrocephalus focus.

And that is it then.

This is an organization I stood with for the last 8 years. A relationship I cared for. Either as I received their Current Magazine, sold their calendars, fundraised for them, utilized their resources and connected with individuals, but also as Nick was on their website multiple times, in their resources, Current Magazine and invited to speak. It was a relationship that I cared about, and I felt that it was a relationship that cared about our family.

• It was also a relationship in the form of a representative who is at almost every single spina bifida clinic, meeting new families being there for a chat and really is the person I picture representing the association. Shauna, as the face of spina bifida, for us and so many families in Toronto, will continue to be a permanent part of my spina bifida community, separate from the direction of the organization she has represented for us.

As the Spina Bifida and Hydrocephalus Association of Ontario converts into the Hydrocephalus Canada there is a gaping hole regarding spina bifida families in Ontario. This is an organization that has existed to help families with spina bifida and hydrocephalus for 40 years.

I’m having difficulty getting over the break up. I had thought more provisions would have been made regarding those left behind. The spina bifida community. A plan for them, for us. A new connection with the Canadian Spina Bifida and Hydrocephalus Association (Hydrocephalus again… at a national level… ). Or even a discussion regarding support for the spina bifida community. I just have a promise that they will continue to support who they are supporting now.

But I am just a member, with just 1 vote.

The Spina Bifida Association of Canada is an umbrella group (with a really horrible website… half of the links don’t work). Even after I contacted them for more information about support in Ontario, I was told to call someone else and given their phone number. So there isn’t any big support waiting there.

I’ve attended yearly general meetings, supported their initiatives, participated in their fundraising. I have been recognized by the organization for the support, and have talked at their golf tournament even about the organization. I have been able to connect with individuals with spina bifida and show Nick he isn’t alone.

We had our 7^th annual SWWR last year, and had just set a date for our 8^th fundraising event. All to support SB&H.

Looking through my blog for the things I have done is just making me angry.

No, I didn’t do any of those things just for them. I did it for Nick. To show what spina bifida looks like, to raise awareness and to fundraise last. And yes I can continue to do that. But it will be different. I liked doing the walks, and last year we didn’t walk, because Nick had just had surgery.

The walk was an event I organized for a reason, and we fundraised for a reason. Otherwise why do we even bother. Why take a day out to walk, who cares, it is just me wanting to drum up support. Well, there are lots of things to support and without the organization we won’t do it. And fundraising. There are many, organizations to fundraise for, organizations that have helped us.

Sick Kids, Grandview, Easter Seals, March of Dimes, Holland Bloorview. All of these organizations have made changes in Nickolas’ life. But I don’t fundraise for them. Or do I stop fundraising for them and fundraise for us. For a door into the house, for specialized camps, specialized lessons, hippotherapy, different toys and aids to help move around.

But no, I have stood by the Spina Bifida and Hydrocephalus Association of Ontario because they represented us. Spina Bifida and the unique challenges and questions and life experiences that come with this complex condition.

Through this we were able to connect with other families, and had the backing of an organization as we showed what spina bifida looks like.

Now, it just feels like we weren’t good enough, strong enough, worthy enough to continue to support. As the organization now focuses only on Hydrocephalus.

I don’t care about hydrocephalus.

I know that is anger talking. But seriously, I don’t care about it. It doesn’t impact day to day.

The hydrocephalus was caused by spina bifida, so while I care very deeply about Nick’s shunt and the impact the shunt and hydrocephalus has on his brain and education, I don’t see it as hydrocephalus, I see it as spina bifida. Just another spina bifida thing. Like the bladder, bowel, chiari, braces, surgeries. All part of the spina bifida.

So hydrocephalus is important, but I have no interest right now with a purely Hydrocephalus Association.

So that is where I am, with Hydrocephalus Canada.
Dumped.

Skating!

We finally got on the ice and skating!

This has been a very long way in coming.
Every winter I try to get the kids on the ice. But both kids. And that has been the hold up.
4 years ago Katheryn got bob skates for Christmas and I had hoped we could make a rink in the backyard. Because Nick wanted to do whatever Katheryn is doing.

So the next year I heard about a skate horse, being designed by the March of Dimes. They contacted me after reading my blog about skating. But after some back and forth I wasn't able to get one to trial. The following year I tried again, but again we just couldn't connect.
So then it just sat on the back burner for a while. Looking at some lessons, but nothing ever came from it.

Well, this year Nick started sledge hockey. And it became about helping Katheryn learn to skate.
Again, I looked at lessons. But they never panned out (we limit to 2 activities and Katheryn is still doing martial arts and brownies).

Then for Christmas we all got ice skates! I was so excited (and nervous... I haven't skated in 13 years). I researched where to skate at the cottage, indoor and outdoor. I got Katheryn some skating aids called Skateez (like training wheels for skates). We borrowed the sledge and we were all ready for a family skate at the cottage!
And then I got sick and we couldn't go.
We tried again during on a weekday, but it didn't work out.

So I was very excited, when in the last week of February, we got on the ice!

Katheryn was so nervous. This was how she did the first round around the rink. A death-grip with 2 hands on the edge.

This was how Nick did the rink. Just gliding, nice. He knew what he was doing!
Of course he got lots of looks and smiles and he skated around the rink no problem!

I had thought/hoped that the Skateez would be enough support. But at the rink they had pylons that they used for support. So Katheryn used that to go around the rink and eventually felt comfortable letting go of the edge. (They didn't have any skate aids to borrow/rent, and they are too small anyways)

Kyle didn't want to go on the ice (it's been a good 20 years for him), but I found it was easy enough to get back out on the ice and skate.
Family selfie on the ice!

Here are my 2 skaters!

Katheryn started getting more and more brave

 

 

And Katheryn got more comfortable going around the ice with her pylon.

 

 She did fall a couple of times, but got right back up!

I think it was a great afternoon! We were on the ice for an hour and a half. Hopefully we'll get out at least a couple more times before the end of the season.

Fun shirts

I like buying things online. If someone posts a picture of a shirt or a link, I will very often go and track down the link. Especially if it is something fun, funny or awareness related.

I do this all the time for the kids clothes (and have been told I have the most interesting awareness clothing), and sometimes for myself (what is more fun that a shirt with a wookie on it?)

So when I friend posted about these shirts with superheroes on wheelchairs I had to check it out.

The company is called Adaptive Apparel www.adaptiveapparel.org/ and they have so many different super heroes (and villians) to choose from.

Nick thought it was so cool and wanted all of them!

He ended up picking Batman.

And Katheryn really wanted one too, and picked Wonder Woman.

 It took about 4 weeks for them to come, and cost $25 USD, and shipped was another $3 (and with a 15% off code - 15OFF - if it still works. With a lot of choice for colours and sizes and even type of clothing.

The kids were so, so excited when the package came. They couldn't even wait until the next day, they tore off their shirts and put these on. And then even asked for pictures!

I agree that it is a cool shirt. (The dark blue doesn't show off the batman, but Nick got what he wanted). It is about normalizing the unique and different, being proud and display yourself to the world (from their website).

My association wants to change

There are some proposed changes coming to my association. The Spina Bifida and Hydrocephalus Association of Ontario.

To focus on Hydrocephalus and take the opportunity that is there to really step up and fill the need for a national Hydrocephalus Association of Canada.

There was a phone conference last night that I participated in, to get more information. And this is what I learned. (I took notes). I am mixing up the order of some of the points, for what I hope is flow is clarity. (Only members were notified of the conference call, but there wasn't anything in the call that said that those who participated couldn't discuss what we learned). There is going to be a vote of members at the end of the month, and only members are allowed to vote.

I found this picture of change, and thought it would appropriate...

The proposed change is to expand into a national Canadian Hydrocephalus association (and have a corresponding name change).

There is an identified need in Canada for a National Hydrocephalus Association. And the SB&H are in a position to fill that need. SB&H stressed that the proposed change will not impact any services that individuals with spina bifida currently receive, and if anything it will provide the opportunity to increase services to members.

• There is a national Spina Bifida and Hydrocephalus Association of Canada but I am not that familiar with it. Beyond finding it inferior to our Ontario Association. But I might have to look at it more in the future.
• My understanding is that they concentrate more on the spina bifida and less on the hydrocephalus.
• They are connected to individual provincial groups, but not with SB&H
• So I am not sure (and of course SB&H can't say what another group would do) if they would be able to fill any hole left by our organization concentrating on hydrocephalus only.

They said that they have been approached by clinicians who state that there is a need for a national hydrocephalus association.


Another reason is financial. There is the need to look for alternative financial opportunities and look at sustainability solutions for the association to be able to continue to provide services to their members in the long term.

They discussed that there is a decrease in the incidence of spina bifida (a topic that inspired my previous blog post - Incidence of Spina Bifida and What's the Point). But the incidence of Hydrocephalus is increasing, including congenital hydrocephalus (born with), acquired hydrocephalus (caused by something, often as a child), and Normal Pressure Hydrocephalus (adult). So it would make sense to increase focus on the disease that is increasing.

• They did not say that they would focus less on spina bifida, just more on hydrocephalus

During the phone conference they stressed that the proposed change is to increase services to members and expand the mandate of the organization.

They also said that nothing online (http://www.sbhao.on.ca/ or http://www.folicacid.ca/) would change.

So that is what I learned in the phone conference.

At the general meeting in September, which I try to go to every year, they mentioned this. At the time I didn't really realize that it would be changing my organization. I thought that it would be something separate while still maintaining the Spina Bifida and Hydrocephalus Association of Ontario, but helping to develop a separate Canadian Hydrocephalus Association.

But for my organization to take out the spina bifida part of their name (their identity?) I find it hurtful and frustrating. We identify the most with the spina bifida aspect, and less with the hydrocephalus aspect. Yes Nick has a shunt and hydrocephalus but it is the spina bifida part that affects our lives. (And maybe the hydrocephalus part too, but it is really all rolled into one).

For us, it isn't 2 different things it all means the same thing. Or else how many diagnosis can one diagnosis have (ie spina bifida which leads to hydrocephalus, also chiari malformation, neurogenic bladder, neurogenic bowel, non-verbal learning disability, ADHD ect).

No, we identify with spina bifida and the rest is just part of the package (but not necessarily everything)

And I know that in the planning stage you can say that you won't effect any spina bifida services. But when your name doesn't have spina bifida in it, then how soon before that starts to fade away...

How can you change your name and your mandate, but still provide services to a diagnosis that you no longer identify with.

A concern that I brought up, is for new parents and newly diagnosed. Where will they go to for information?

They won't go to the folic acid website. They are past that, this has already happened.

And they wouldn't go to a hydrocephalus only website or information, that is not a given yet, that is not the focus. You can only focus on one diagnosis at a time, and hydrocephalus isn't it

• Or at least it wasn't for me, 80% hydrocephalus rate means 20% won't have hydrocephalus, and Nick's didn't develop until he was 3 weeks old)

As a member of the SB&H association, I have the right to vote on the proposed change. This is my  association and my vote will be counted.

At the moment I am not sure how I will vote.

From my letter I received, the proposed change is: SB&H is recommending changes to its by-laws to facilitate the transition to a new national organization with a focus on hydrocephalus.

There is a meeting and vote on Feb 26th, and the ability to assign a proxy to vote on your behalf.

But I still don't know.

I know change is sometimes necessary, sometimes positive, and no one proposes a change that is purposefully negative.

But for all of the promises and talk that this will be positive, will increase services and not effect the spina bifida families. I think that it will eventually. I think that it will create a slope that will gradually take away from spina bifida (not on purpose), but because the mandate is for hydrocephalus and that needs to be the focus.

So that is what I worry about. I worry that it will take away from (and if not take away, then focus less on) awareness of spina bifida and take away from support and information for new parents. And while there isn't a focus on impacting that termination rate (47%), there will never be.

And that hurts me. That number still haunts me and I feel it is 47% of parents who miss out on belly laughs and smiling faces and being told "I love you so much", all because of fear and negativity and the fact that no one has a crystal ball.

• And I know that this is my bias.
• And it isn't even a mandate of my current organization, but to me, allowing me to raise awareness and show what spina bifida looks like, I am making a step to inform the next 47%. So when a parent receives a diagnosis they can say "Oh, I know what that is, I can do this, just like Nickolas' parents" (I heard similar words when I told my then-manager, "Oh, just like Charmaine" an adult with spina bifida I have worked with, and have gotten to know.)

That is what I want from my organization. The platform to say "this is what spina bifida looks like" and I worry I will lose that with a Hydrocephalus-only focus.

 And in case you need a reminder.
This is what spina bifida (and hydrocephalus, and chiari malformation, and neurogenic bladder and bowel) looks like!