I enjoy

This is my family!

Doing things myself, playing with other kids,

playing with action figures and dressing up. I
love singing; my favorite song is O Canada. I
love telling stories, reading books and the
water. I take swimming lessons and go to
Beavers. I enjoy going to school.

I have a big sister named Katheryn, she is one

grade older than me. She is my best friend.

I may be shy at first, but once I get

comfortable I become a social butterfly or
ninja turtle. I like to move around and
explore once I am comfortable in a new
place, I can climb onto things and into a
chair. I like running in my walker, and I will
use objects around me to balance.

My mommys name is Amanda and my

daddys name is Kyle. My mommy likes to write
about our family in a blog
www.riddingfamily.blogspot.com
I also have a big dog named Sammie

Sometimes I need help

Getting ready to go outside. I am working
on getting myself ready and need extra
time. I am working to zip up my coat, I can
take off my shoes and my braces by myself.
I know my numbers, letters and some sight
words. I need extra time and effort to write
words, and I have a laptop (at school and
home) to help me to get my words out. I still
work on my writing and drawing.
I get overwhelmed if Im not sure about an
answer, and need encouragement and time.
I will often need extra processing time to
give you an answer to a question.
I have a physiotherapist and occupational
therapist that help me move and work.

When my mommy and daddy are working I go

to daycare and Jennifer looks after me.

Some important contact information:

Home: XXX-XXX-XXXX
Mom (Amanda)
cell: XXX-XXX-XXXX
XXX@hotmail.com
Dad (Kyle)
cell: XXX-XXX-XXXX
XXX@yahoo.ca

I want to get a Ninja Turtle when I grow up

I am 5 years old, my birthday is November 13.
You can call me Nick or Nickolas.
I am very happy and love making people
laugh. I have an active imagination and love
to sing, dance and play. I love the colour
orange. I am excited to go to school with my
sister in September
I was also born with spina bifida and
hydrocephalus. But that hasnt stopped me!

When I was born

I had a hole in my back. This is called spina
bifida. My spine was open and my nerves
were damaged. These nerves cant tell my
body how to move and what I feel.
I had surgery to close the hole when I was 24
hours old. Even though my back is fixed (and
I have a large scar) the nerves are still
damaged.
The damaged nerves go to my legs, feet and
bottom. I cant feel the back of my legs or the
bottom of my feet very well. I also have
weak muscles in my legs and ankles. Nerves
are also damaged that go to my bladder and
bowels, so I need extra help in the bathroom.

I have a Latex Allergy. This is very

common with kids who are born
with spina bifida. There are a lot
of things that have latex in them. It
is important that I stay away from latex
balloons because the latex in them can cause
me to have an allergic reaction, especially if
they pop. Many things contain latex, like
rubber bands, rubber gloves, erasers and
band-aids. My parents can give me items that
are latex-free.

Because I cant feel part of my legs I have to

pay attention to my skin. If you notice I have
any red marks on my legs or feet please let
my parents know.

Because of spina bifida I also have

something called hydrocephalus.

This means that when I was a baby I had too

much spinal fluid (water) in my head. To
keep this from damaging my brain I had
surgery to put a little tube called a shunt into
my brain that takes the extra fluid and puts it
into my belly.
I have a semi-circle scar above my right
temple and a bump in my hairline that is my
shunt.
Sometimes the tube can become blocked or
stop working. If this happens I will be
unusually tired, or irritable, vomit and my
eyes might look funny. If this happens I may
need to have emergency surgery to fix my
shunt. If you are worried please let my
parents know right away.

I have a special way to go to the bathroom.

My nerves dont tell when I have to go to the
bathroom and I cant pee on my own. To help
me pee I use a little tube that goes into my
bladder to empty it. It is called a catheter and
lets me empty my bladder at a regular time. I
will have to do this at school, usually around
lunch time. Someone needs to do this for me
I also have a hole in my belly button called a
MACE this helps me to poop at night. This
makes my belly button look red, which is
normal. If I have any leaking from this, please
cover it with gauze and tape.
I wear a pad in my underwear in case I have
accidents. I dont have control of when I pee
or poop and I dont know if I have gone.

Helping me move
I wear plastic braces on my legs to help support
my weak ankles. I wear AFOs (ankle foot
orthotics) on my legs. They fit under my pants
and into my shoes
To help me walk I have my
red Walker. I pull it behind
me. This gives me the support
I need so that I can walk. It
can go forward and backward..
I need extra space to move
around the room. If I need help I will ask for help,
but please dont let anyone push or pull me, I
might lose my balance and fall down. I cannot
go up or down any steps in my walker.
I use Canes
and Crutches
to move
around short
distances.
I can also move around a room
holding onto things. I will crawl or walk on my
knees to get where I want to go.
I have a physiotherapist and occupational
therapist who help and work with me.
If I need to go long distances I
also have an orange
Wheelchair. It lets me play
and keep up with other kids
without using too much
energy. I move my wheelchair
myself. I use my wheelchair
when I am going on the bus.