For the parents of kids w/TM. I had TM when I was 5. I still have
bladder/bowel problems and trouble walking (I use a chair at work and to go
shopping and such -- anytime I would have to walk long distances). When it
happened to me, no one really knew what was going on. It sounds like that
has changed somewhat as far as diagnosis is concerned, but not really a
whole lot as far as treatment. One of you mentioned your son would be
swimming and horseback riding. Those are both excellent. I did them both
and still swim. I don't have access to a horse anymore, but may try to get
back into it again. I also canoe and for those with good upper body
strength and control and poor lower body strength, that's great exercise
and a great confidence builder. Similar to horseback riding in some ways,
as far as self-esteem building is concerned: You're controlling something
large and unwieldy and a lot of people who don't have your problems can't
do it.
I'd also like to say if any of you parents have kids who are going through
particularly trying times especially during grade school, junior high and
high school -- with the other kids, with body image, with just plain
growing pains compounded by TM -- I would be happy to talk to them, write
or email them. Sometimes it's very hard to talk to your parents about
what's happening, even though they've gone through the whole thing with
you. Kids with TM, like all others, reach a point where they want to be
autonomous and having to depend on the 'rents for things outside the norm
makes it harder. I know there are some other folks, some of them kids, on
this list who have made similar offers. I also talked to my Mom about it
and she said she'd be happy to talk to or write parents who are struggling
through the other end of that equation. It's got to be hard when your kid
is hurting and doesn't want to talk to you about it. My Mom and I went
through some real battles before we got to be friends and that was one of
the biggest obstacles. I can tell you a little bit about what your kids
are feeling, but I can't get inside their skin any better than you can. My
Mom understands firsthand just how hard it is on you. I would love the
chance to help a kid to be able to express some of the anger and pain that
he or she needs to come to terms with just growing up w/TM. Please feel
free to contact me at this email address. Mom doesn't have email, but I can
get her in touch with you or send files for her. I do know that having a
friend to talk to at the right moment can be invaluable.
Ellen Wilson
ellenwilson(AT)mindspring.com