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.

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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!

School Transition

Our 2 years at Campbell's Children's School is coming to a close.
I am so incredibly thankful that we were able to have our time at Campbell's with the support and therapies and inclusion.
Nick is not the kid with the disability and the wheelchair and other equipment in the class. The one that is different. Nick is the same as all of his other classmates, there are many classmates with equipment and wheelchairs or walkers. They have a group called Wild Wheelers every week!

His class only has 10 kids, 1 teacher and 2 EA's. So there is a lot of support.
And I don't have a lot of concern when Nick is in school.

So we had a transition meeting with Campbell's and Nick's home school.
The school board, CCAC (which is community nursing), the principal of the new school and the special education teacher (called a SERT) where there to learn about Nickolas and his needs. Nick's therapists (speech, physio and occupational) as well as his class teacher were there to tell everyone about Nick's needs and experiences.

I was ready with my updated pamphlet for everyone. And printed out enough copies for everyone to have.

School Pamphlet - 2015 - Confident

And then everyone had an opportunity to talk. It was good for us to learn where Nick is as well.

I had my whole binder all ready and prepared, and also had resources from the spina bifida and hydrocephalus association for educators. 

Speech therapy will not be a problem, he will be discharged from them in June (as he ages out) and she doesn't think he needs to continue. Which is good, because the waiting list is 2 years (so that means 2 years without therapy, unless we pay for it privately).

We talked about his needs for the classroom, and what kind of equipment he will have. That is all OT, so we will have an OT assessment and recommendations. Nick will have his computer and his walker that will go to the school. He also uses a stander, which we don't have at home, so I'm not sure if this is his or not for school or just a loaner.

Nick will need enough room to move around the room.

The SERT teacher and principal also needed to know about what kind of help he would need. This is for EA requests. The EAs are part of the school and not assigned to any individual child. Morning, recesses, lunch and home time would all be times he would need extra help getting shoes/boots on and ready to go outside. Transferring between stander he will definitely need help, but I don't think he will need help to get in and out of his wheelchair to walker.

It's hard, because we want to plan for needs he will have for the school year. And like a lot of stuff when you are applying for government things you want to be harshly realistic. There is a lot of support that he currently gets at Campbell's and we need to remember that he will now be 1 kid in 30, instead of currently 1 in 10 (with 2 EAs), but all of those 10 have special needs.

It is so hard to know what we don't know.

I'm worried that we are missing stuff (and even now I can't remember half of the things that we talked about) so we are trying to have another organization (Resources for Exceptional Children) come to school meetings to help to support us and help us with the system. I'm hoping that at an upcoming PA Day for Nick we can go to the new school and explore a bit. Nick already knows their yard (including the accessibility issues with the yard) from Katheryn's Sparks nights.

I think there is going to be an OT assessment to try to address some of the issues; like only one independently accessible exit, and one other door but a pretty inaccessible yard door, which has a ramp with a step up and a door that opens over the ramp. They will also look at the classroom and other (?bathroom) issues we might come across.

I am so glad that we have Campbell's because they pretty much are able to talk to all of the issues and Kyle and I were just there for the ride. And they will continue to be there for a resource for us and the school as needed.

Both Nick and Katheryn are excited to be together next year!

School Pamphlet

I updated Nick's school passport/pamphlet for the year. I just updated the one we did last year. It was a challenge to talk about the MACE without freaking anyone out. And add the bathroom issues without being TMI.

I plan to update it every year with new pictures and information. Of course on the front is all fun things about Nick. Then when you open it up it has the medical stuff (what is spina bifida, scars and hydrocephalus and shunt malfunction. Also latex allergy and common latex items in school, finally the bathroom issues.) On the inside is mobility with pictures, AFOs, canes, walker and wheelchair. on the back is more about Nick. What he enjoys how he has fun. Followed by how he may need help. At the back is about our family and contact information.

(And I just realized no blog address)

Please feel free to use this if you want to copy it for your own child.

School Pamphlet - Sept 2014 - OnLINE

A countdown to school...

Camp is done, so now comes the next big event - we can only be excited for one thing at a time.

Now it is the first day of school

 

So I pulled out all of the material we got in June and thought I should probably start reading it.

 

We got the picture book for Nick to look at.
To start to get a little more excited about school

I hadn't actually realized that Nick thought that I (or Daddy or Jennifer) was going to school with him. And he's been getting upset when we tell him that we aren't going with him.
We talk about the bus, the new friends, the teacher (her picture is in the book)

We have a parent/teacher interview next week and then the following Monday school is in!

There is a whole binder full of stuff that I should probably look more closely at (I see labour day reading in my future)

And there is a dozen  pages or so for me to fill out

And I'll include my school passport as well



A lot of this post is a review of information I already posted. But now we are in the final countdown and this is actually happening.

In 13 days

I think I'm ready. I'm not sure how to get Nick more ready.
I hope he adjusts well.
I guess we'll see.

13 days.