School Letter to student/parents

For the last 3 years I've been making pamphlets to send to school with Nick. Usually it has been to his teachers and last year I made one for the students as well. To help answer some questions and normalize the equipment Nick uses.

When I was looking over Nick's pamphlet for this year I realized that it has a bunch of information that is helpful for the teachers, but not really stuff his classmates need to know. So instead we wrote a letter, with some pictures.

Hi classmate,

My name is Nickolas, you can also call me “Nick” and I am in your class with Ms L.
I am 6 years old and in Grade 2. I love playing Avengers and Star Wars and may recruit you into a game! My favorite characters are Captain America and Darth Vader. I love playing at recess and my favorite subject is gym. I may be quiet at first, but once we get to know each other I like playing different games. I like wrestling and playing sledge hockey this summer!

I was also born with spina bifida and hydrocephalus. But that hasn’t stopped me!

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When I was born I had a hole in my back. This is called spina bifida. My spine was open and the nerves in my back were damaged. These nerves can’t tell my body how to move and what I feel.

I had surgery to close the hole when I was 1 day old. Even though my back is fixed (and I have a large scar) the nerves to my legs and feet are still damaged. I can’t feel the back of my legs or the bottom of my feet very well and have weak muscles in my legs.

I also have hydrocephalus which means I have extra water (fluid) in my brain. I have a tube, called a shunt, which takes the water from my brain and puts it in my belly. You can’t see this tube, but I have a cool scar and a bump in my hair, but you can hardly see it. I also have a latex allergy, which means that I can’t be around any latex balloons or I can get sick.

¶¶¶

You may have noticed that I use extra equipment to help me move around the school. I wear braces on my legs to support my ankles. They have Avengers on them! I also use blue Crutches, I need extra space so that I can put the crutches on the ground. I can walk and even run with my crutches. Please don’t try to squeeze around me, because I may lose my balance and fall.

I also use a red Walker that I pull behind me. Please don’t push or pull at the walker because I might fall. I can run and play at recess and gym class with my walker. I also use an orange Wheelchair that I use on class trips and on my bus. I can push myself, but if you want to help push me, please ask me first.

I have an older sister named Katheryn who is in Grade 3 at XX. I also have 2 big black dogs named Rory and Chuva. They are very friendly. My parents are named Amanda and Kyle and my mom writes a blog about spina bifida and our family.

I am excited to meet new classmates and spend the year with you!

From Nickolas and Family



Nick has the same teacher as last year, but only 2 students are the same as last year. He is in another split class, this time being the older grade.
I think it will be a good year for him!

Speaking about Our Life

Growing up I never thought I would enjoy talking to a classroom full of people. I hated public speaking, and in elementary school I would do anything not to have to talk in class. It didn’t really get better in high school or through my various degrees.

But put me in front of a class and let me talk about our life with spina bifida. I don’t even need my notes! Or PowerPoint slide full of informational and very cute pictures.

I’m lucky that I have this opportunity. (I hope everyone knows Milo - my ninja seal)

My mother works for Centennial College in the RPN program (where I have also had a placement – and where I might eventually want to work when I’m sick of hospital life). But through this connection I have been offered various opportunities to talk to classes about spina bifida. I’ve talked to PSW and RPN classes as well as OT/PT assistant classes.

And I love it!

I’d do one (or two) every semester if I could. I’d talk to different schools, different classes. Anyone who is interested.

I also ask if anyone has heard about spina bifida before, or knows someone who has it. I say it is the leading permanent birth defect in North America. I say that it is what folic acid helps to prevent (very quickly followed by not 100%, but it helps to decrease).

I start of talking about our D-day, how we were told the diagnosis. Then Nick’s birth. I talk about what spina bifida is, as well as hydrocephalus, Chiari, all those other pesky diagnoses. I talk about the surgeries (closure and shunt) what the lesion level might mean to walking, our team, our equipment, what walking aids there are and what we are using. I talk about our family and where we are now.

I answer questions. I hope I’m not too medical or scary. That’s why I like pictures so much.

I always have Nick with me; sometimes I have Katheryn with me as well.

I hope the students get something out of it. I hope that if one of them gets a similar D-day (or knows someone) they will think of how great Nick and we are doing and not be afraid.

So even with my busy schedule I always make time for these classes. I have ideas to approach other schools – or maybe even my own hospital/doctors about talking. If anyone is interested – please don’t hesitate to contact me
I wish I had a picture here to put with me and Nick talking in front of a class – maybe next time I’ll get someone to take one.

Mommy the Educator

I find myself in a great position to get some valuable information out about spina bifida.
And I LOVE it!

I just returned to work last week, I work as an obstetrical nurse in a labour and delivery unit. Being back at work I have everyone asking me how Nickolas is doing. I wanted to be able to say more than just "great". Which he is donig. Every milestone is dependant on walking that I wanted to be really sure that I didn't talk about what he wasn't doing. Nickolas was very nice and started to army crawl, so I could talk about what he was doing.
I had a couple of people (who didn't know about the SB) ask if he was walking yet. "No, not yet, it'll still be a while, he was born with spina bifida". Then I get the sad face, and 'I'm sorry', I am much more able to say "Don't be, he is such a happy baby he doesn't care if he has spina bifida." And Nickolas will walk, just not yet.

A couple of times I find myself educating other health professionals. And having them learn something. I only hope that the next time any of the obstetricians I work with have someone who's baby is diagnosed with spina bifida they will think of Nickolas while they give out their predictions about quality of life.

But I've had other opportunities to educate as well.
I got to speak at a college to a group of PSW and RPN's about our life with spina bifida. I explained about spina bifida and all of the stuff that goes with it. Most of the material I got from my other blog http://www.aboutspinabifida.blogspot.com/ and then just talked about it. About our life and how things were, our day to day, the fact that Nickolas has all of these diagnosis' but he is still healthy and our lives have changed but not drastically.
Everyone was very interested (of course - attendance was mandatory) and they asked alot of questions. I was very happy that I had the opportunity. AND we all wore our REDEFINING SPINA BIFIDA shirts.

They also got the see the kids in action. The good thing about being a guest speaker is that certain things are overlooked. Like having a 2 year old running around the classroom, and doing half of the class with a 1 year old in your arms. But this is my life, hectic but enjoying ourselves.

When mom's away...

I returned to work this week. To celebrate mommy's return to the workforce, Nickolas decided to accomplish some work of his own!

Army crawling!!!

Way to go Nick!

(you don't have to listen - it's just background talking in the video)

  

So I stay home with him for the whole year! Then the one day I'm not there! BANG! What a show-off! At least I don't have any concerns about him adjusting! I adjusted very well also. Back to 12 hour shifts and commuting (yuck!), but also to being a nurse and having co-workers, adult time and some outside responsibility. It helps that I love what I do - labour and delivery. I can also appreciate the time I have at home more.

To top off our busy week, yesterday I went to the college and talked to 2 classes of PSW students about our life with spina bifida. Complete with a little education, alot of personal experiences, 2 children who were there in person and lots of pictures. I took alot of info from my education modules that I did in June (spina bifida awareness month in Canada and moved to a separate blog) I think it was a very good success.

Our Redefining spina bifida t-shirts came in, and that was what Nickolas, Katheryn and I wore to the class. When we are talking about spina bifida and how we coped and went through so far in our journey I don't know what is more fitting than:

Strength

Courage

Endurance

Fear

Patience

Love

Trust

Hope

June is SPINA BIFIDA AWARENESS month

Hi everyone,
It is my first spina bifida awareness month. Anyone in Ontario may have noticed that at liquor stores there is a tin by the cash register asking for donations and awareness of the importance of folic acid. I had vaguely noticed these before but never really paid that much attention to it. Well now I do.
Folic acid [sorry Jill I have to mention it] is believed to decrease the chance of spina bifida occuring (not always - as I was taking prenatal vitamins when I got pregnant). And the folic acid initiative has been shown to statistically decrease the incidence of neural tube defects.

This time last year I only had a vague idea of what spina bifida was, and was pretty much limited to checking babies backs in their assessment and someone I met during my clinical placement, who was living in her own home with 3 kids and needed help to get around. Well that has changed and I hope that it has changed for many people that Nickolas and I have had contact with. My hope is that spina bifida will become a household name similar to other (and less common) birth defects such as Downs Syndrome and Cystic Fibrosis.

Yes spina bifida is the most common birth defect in North America (about 1 in 1000 births) and that does not even consider those babies that are terminated. But spina bifida is not very well known among the general public - think about your first thoughts about spina bifida.

So I'm going to take this month as an excuse to try to make spina bifida a household name. The main focus of the month is going to be preparing for my Spirit Wheel Walk Run, June 19. This is an event that was created by the Spina Bifida and Hydrocephalus Association of Ontario, but that is actually run by individual families. My event is a walk along the Pickering Lakeshore for 3 hours with Nickolas' Loved Ones - our family and friends.
To prepare I have talked to family and friends, made up a personal pamphlet with information as well as a poster that I posted at work (and apparently was not clear that it was about me and Nickolas). But here is the final stretch. Not only to do I want to raise funds, I want to create awareness. I want to shout from the rooftops - My Son has Spina Bifida and it is only One Aspect of Who He Is. He is a wonderful, happy child who will have difficulties in life (yes everyone does). He is what Spina Bifida Looks Like.

Education and awareness is my goal for this month. I'm hoping to put some educational material on here this month - as well as my up-to-date, what-is-going-ons. I've moved this to it's own blog at http://www.aboutspinabifida.blogspot.com/ which is also a link on the side of this page.

I'm going to try to post the pamphlet I made up - it's a pdf file. And of course all my wonderful pics of my cutie-pies!