Re: PT in schools

[Guest guest]

I went to California Children's services for PT. They had a building

attached to a school but the kids didn't go to the school. I used to get so worn

out and weak. I wouldn't have been able to do PT at

school. Someday's I was so weak just walking out to the parking lot was

difficult. I can't imagine if I had to actually go back to school.

[Guest guest]

We didn't have insurance when I was a kid but CCS was a free service so I was

able to go to PT.

Wouldn't you know my husband has great insurance but our doctor doesn't want the

kids in PT. He says as long as they are playing and being kids they are fine. I

am okay with this because when I was in PT they kicked me out after two years

and said it didn't do me any good. LOL

[Guest guest]

I would have been absolutely mortified if I had to have PT at

school! It was bad enough that the (private) PT came to our house,

set up in our living room, with my parents and brother 'watching'. I

would beg Mom to close the curtains - lol, as if the neighbors

cared, but *I* sure cared. (circa 1960's)

I was so happy my doc told me to walk in the sand as I loved the

beach, anytime of year, and still do. That, swimming, biking and

horsebackriding were " my own personalized " forms of PT that no one

really thought about until I was 17 or so and had just been doing

what I liked so much.

Having PT at home did allow my parents to exchange info with the PT

that we received from my neurologist and orthopedist, and she could

call them with Q and A if needed. And the PT could fully focus on me

for an hour 3X a week or so, and to this day saved my arms from

horrible contractures that were keeping a 'straight' arm bent at the

elbow.

To this day my arms are very straight when held out, and all in all

I do believe in-home PT was the best for me. I don't understand why

PT and OT would be considered part of a school's " curriculum " today.

It seems that this would be something for after school, and

certainly, if a school PT has 10 kids to give PT, exactly how much

does each kid get and does that PT *really* understand all the

different needs of each child?

Life was simpler for me, it seems, even with the P.E. issue. In Jr

High, my neurologist wrote a letter excusing me from P.E. during

school hours, my mother met with the Principal, and I spent the P.E.

time in the Library, helping the librarian or doing homework. It

worked for me. This was 1960s, WAY before 504, IEP, ADA, etc. I was

never treated any differently by anyone - my friends thought I was

cool because everyone hated the gym teacher and I was the lucky one

to get a medically excused. lol I was medically excused from P.E.

in high school too, instead went to study hall to do homework and

catch up on reading or prepare for tests.

Still, on my own, I biked, swam and rode horses. Now if the schools

had those activities, I might have been able to participated, but

going it alone taught me to pace myself out very early in life.

~ Gretchen

[Guest guest]

If CMT is impacting your childs' day to day in school there is nothing wrong

with recieving the services.There are not 10 kids in a group, there are 3 maybe

4. My son is not " mortified " at all, he actually really enjoys it. The services

are there in New Jersey to be used if needed.

[Guest guest]

-

That's exactly why we do it after school and at home. It fatigues

out too much to be able to return to classes after a session.

It's hard to believe though that there are states that don't offer

these services to kids in need through the schools. We are blessed

that we can do it on our own with insurance....what about those who

can't??

[Guest guest]

Hi,

My name is Kim and I've been reading everyone's posts for some time now. It is

amazing to me that this site exists...there is so much wonderful information and

caring from people who actually understand living with CMT.

I am 50 and I was diagnosed back in the early '60's by a Navy doctor (Wm.

Stryker) who was actually a family friend (my Dad was in the Navy). He diagnosed

my Mom first and then me. I had the test where they stick all the needles in

your legs and apparently run current through them. This wasn't exactly explained

to me my Mom and Dad had just told me to be brave and not to cry. So I didn't,

even though I thought I would pass out.

Dr. Stryker later told them that He couldn't believe how stoic I was, that he

had adults who literally jumped off the table. My parents were proud of that and

it set the tone for a lot that came later. The last thing I wanted to do was

draw attention to myself.

I never had PT because that would have been admitting there was a

problem and that's the last thing I wanted to do. I did everything I could to

appear " normal " and in some way that helped me. I rode my bike everywhere,

swam, rode horses, backpacked. I know now that in fact I was lucky to be able

to do all of these things.

Anyway, I don't mean to wax on about all of this but your entry about growing up

really resonated with me.

I also want to say how inspiring everyone's entries are and that I have learned

more here than from any organization, doctor or group.

I also deeply appreciate the positive nature of the site and the participants.

I'm a prosecutor in Pasadena,CA and I'm not generally surrounded by things

positive... In any event thank you Gretchen for all you do and thanks to

everyone who participates here and provides hope!

Kim