Re: Child advocate to help CMT kids

[Guest guest]

,

Isn't amazing how people automatically think that our kids aren't

getting enough exercise? They are never around to see the

consequences of over exertion.

If this school year starts off as badly as last year ended, I will

also be finding an advocate for and I work in the school

system where he goes to school. I actually had to fight for

Hospital Homebound for the last semester of the school year, even

though it was suggested by both the pediatrician and the

neurologist. Ah yes, the joys of CMT.

[Guest guest]

,

It's funny how the schools " think " they have so much say in what children with

disabilities need. As parents we need to stand up to the schools. The law is on

our side but the schools would prefer we didn't know the law so they can save

money to give themselves raises.

[Guest guest]

Hey -

Amen to that! Just once, once I would love it if a teacher or an

administrator actually said " Hey Mom - what can we do to help

be the best he can be? "

I think part of deciding whether or not to tell the schools what's

going on is how far the CMT has progressed....we were originally

told that should be status quo with his toe walking until he

was in his 30's or 40's. No one could predict how fast his CMT

progressed. When a student can't hold a pencil to take notes, or

keeps being chided for sloppy work, or is forced to stand outside

for lunch recess with no place to rest it's time to remind, and

resoundingly thump on the insensitivity of the schools at least in

my opinion. I also understand how sensitive teenagers are though,

and I agree that it's a really hard thing to determine who knows

what.

[Guest guest]

Hi all

We had our 4 yr old evaluated by the public schools even though he

is enrolled in a private preschool. They said he was borderline in

need of services for Physical and/or Occupational Therapy. Since he

was borderline they opted to not provide services. We have since

been getting him therapy at a local rehab hospital, and they are

great. Although the co-pays are really adding up, I am convinced

that their facilities are superior to the public schools. It still

irritates me that he got denied services though. They wanted to re-

evaluate him when he enters kindergarden, they suspected he would

have trouble keeping up with writing. I feel like- let's work on it

now- why wait?

I'm also feeling frustrated today because of the lack of knowledge

from our primary doctor. Since he was a baby we wanted to have him

tested for CMT because of the family history. They didn't think it

was necessary because after all there is no cure or treatment. Well-

4 yrs later the doctor asks me today why we didn't have him tested

sooner! Hello! They said not to! If I had known then that there was

physical therpay available to help him at such a young age I would

have had him tested straight away. He thinks the exercises are fun.

Everything can be made into a game.

I'm happy to say that his preschool picked up on his issues early,

we got the testing, and now he is getting therapy which seems to be

improving his coordination and tone. He also is taking Karate - in 3

months time we saw a huge improvement in his physical abilities.

Sorry I'm so long-winded!!

-Gail