hi, Sherry, my name is Timothy. I bet it's driving you mad having to
worry about this situation.

I will be 23 this thursday, and I also have Spina Bifida (I can walk,
too). I know the scary words "alone at school" all too well. I
remember in my kindergarten class, the assistant teacher would send
me the nurses office to change the undergarment (Goodnites) several
times during the day. My supply was kept in the nurses offices, or
sometimes i kept it in my bookbag. As the years progressed, the
teachers i had didn't do that, but rather let me leave the classroom
at anytime to do what i had to do.

Having said that, accidents did happen. When they did, that's when
my classmates began the heckling and teasing (i.e. calling me "diaper
boy"). To make things a little worse, when i started my growth
spurts, the bones and tendons in my feet didn't grow correctly. I
started to limp, and ultimately, my achilles were so tight that i was
on tiptoe all the time. And remained like that for years because my
parents had the attitude that i was tough enough to overcome, so i
never went to specialists (which is dire if you have SB).

By the way, up to this point, I had lived in the Philippines, Japan,
California, and Hawaii because of my military father.

Okay, time passes. My dad retires, and we move to NC (where i live
now). Let me tell you about high school. My dad put me through
Catholic schools since 7th grade. The catholic high school i went to
comprised of children of wealthy backgrounds. That alone made things
easier on me. Catholic school kids typically are more sympathetic,
but most pretty much understood that things happen to people. They
would ask about why I walked incorrectly, but the indoor plumbing
issue never arose. I like to think no one knew, but I'm satisfied
with the fact that it never came up. I kept my supply in my bookbag
(2 a day was enough), and I had access to the teachers' single
restroom facilities. It worked out well.

Since I've graduated, I now have a job in sales, which is still
tricky, but i've started the process of completeing what my parents
never started. I had major ortho. surgery on my feet, have one more
in september, and I'm in the process of scheduling a an ileostomy
bladder surgery for incontinence.

So, a word of advice from an adult who has been through the pains of
SB, just make sure his supply is hidden, and make sure if it needs
refreshing, refresh it. take care.
Timothy






--- In sbaofnc@yahoogroups.com, "Sherry Thurman" <thurman@...> wrote:
>
> Well the time is near my son John will be going to Kindergarten!
The good thing is I will be teaching at the same school that he will
be at. I need advice! He is not cathed and he wears diapers /
goodnites. I have been working on a bowel program and he has been
consistent on most days. Do you allow him to go to the restroom with
the class and manage on his own and if he needs to be changed he can
come and get me or do I just set a schedule for him to use the
private bathroom and I meet him there? What have others done who
have children that are not cathed yet? I don't want him to be
dependent on me, but I want him to feel comfortable as he starts
school. Background info: He walks with braces but has good balance
and can pull down clothes and pull them up etc. He had not been
telling be when he has to use the bathroom or when he has a bowel
movement. I get upset because I think he plays me because he may not
be able to feel it, but he should be able to smell! Has other
parents experienced this and if so when did your child tell you they
were wet or had a bowel movement? I feel so fortunate to be able to
be at the same school to ensure he is well taken care of but I don't
want to hold him back. I have never treated him differently! Also,
do any of you have a toileting plan or a medical plan in place for
your child? If so could you share?
>
> Sherry
> Mom to John will be 5 on 7/28. Lesion S1, walking, running, not
cathed, shunt. Leann 9 bright and loves her brother, also mothers
him!
>
> [Non-text portions of this message have been removed]
>