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!

Friday, September 9, 2016

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!
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!

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