Re: surviving school years

[Guest guest]

I. feel so much better about hating PE.I was always the last to be chosen

for the team because i was so clumsy and forever getting hurt. Gwen

[Guest guest]

It was not easy! Although my CMT was not diagnosed until many years

later, I know I've had it all my life, and that it was mainly CMT

that caused my clumsiness and falls. Way too many hits on my self

esteem during school years, and even into adulthood. I remember a lot

of awful incidents that were embarrassing beyond belief.

Even in college. I was in marching band! if you can believe that. I

once threw myself on the ground by catching my foot in the opposite

pants leg, doing some stupid marching thing. Wanted to die on the

spot! I'm sure, though, that it was because my feet just couldn't do

things like normal people. But nobody knew then.

I hope things are better for kids these days, but I'm sure people who

are somehow " different " still take a lot of hits. When you consider

that more than 50 million people in this country have disabilities,

that's really sad, isn't it.

Regards to all,

Carolyn

> For those of you who have had CMT since childhood - how did you get

> through your school years? I cried so much and slept so much both

> because I was tired, but also because I was frustrated and angry.

Just

> wondering how everyone else 'survived'.

>

> Gretchen

[Guest guest]

It was not easy! Although my CMT was not diagnosed until many years

later, I know I've had it all my life, and that it was mainly CMT

that caused my clumsiness and falls. Way too many hits on my self

esteem during school years, and even into adulthood. I remember a lot

of awful incidents that were embarrassing beyond belief.

Even in college. I was in marching band! if you can believe that. I

once threw myself on the ground by catching my foot in the opposite

pants leg, doing some stupid marching thing. Wanted to die on the

spot! I'm sure, though, that it was because my feet just couldn't do

things like normal people. But nobody knew then.

I hope things are better for kids these days, but I'm sure people who

are somehow " different " still take a lot of hits. When you consider

that more than 50 million people in this country have disabilities,

that's really sad, isn't it.

Regards to all,

Carolyn

> For those of you who have had CMT since childhood - how did you get

> through your school years? I cried so much and slept so much both

> because I was tired, but also because I was frustrated and angry.

Just

> wondering how everyone else 'survived'.

>

> Gretchen

[Guest guest]

In a message dated 7/27/2000 11:47:43 AM Pacific Daylight Time,

liliwigg@... writes:

<< For those of you who have had CMT since childhood - how did you get

through your school years? I cried so much and slept so much both

because I was tired, but also because I was frustrated and angry. Just

wondering how everyone else 'survived'.

Gretchen

>>

AWWWW I hate to think of it!!!!

[Guest guest]

In a message dated 7/27/2000 10:04:04 PM Pacific Daylight Time,

mel2mars@... writes:

<< My parents intercession and support could have helped my experiences, but

they had a hard time dealing with it themselves. All in all, I did ok, but

wouldn't want to do it again!

Melody >>

Yeah same story here.

jenny

[Guest guest]

Gretchen:

In grammar school I was a slow runner, but I could play most things and

everyone was nice to me. When I had an ankle surgery after 8th grade and

then went into high school with a cast and crutches, that was tough. I went

to parochial schools and I dearly wanted to be in the choir, but since I

couldn't stand up and sit down easily, I had to quit. I also had to quit

piano as my hands were obviously becoming affected and I couldn't play loud

enough to suit the teacher. She stressed me out, so I quit (she was very

angry with me). I doubt my parents ever discussed my disease with any of

the teachers. After the cast I had to climb up and down stairs - would end

up last to class and tired. When we had icy roads, I wouldn't cross the

street to catch the bus, and I was given the rolling eyes by the attendance

teacher. I asked not to be put in the front row for graduation - nobody

understood I needed something to hang on to when I got up to receive my

diploma. I'll always kind of resent those events.

I was so glad to get out of high school, I did not pursue college because I

was afraid of the physical challenges and I had had enough. I started

working the next day and never stopped. Have taken some community college

courses, though.

My parents intercession and support could have helped my experiences, but

they had a hard time dealing with it themselves. All in all, I did ok, but

wouldn't want to do it again!

Melody

surviving school years

> For those of you who have had CMT since childhood - how did you get

> through your school years? I cried so much and slept so much both

> because I was tired, but also because I was frustrated and angry. Just

> wondering how everyone else 'survived'.

>

> Gretchen

>

>

>

>

[Guest guest]

Wow, bringing back those memories are painful. School was a rollercoaster

for me, one minute wonderful, and one minute terrible. I was a very skinny,

petite, and the typical coward. I never stood up to all the bullies that

would shove me down and pick on me because I just couldn't be as physical as

they were and I couldn't run away from them. I begged my teachers, when I

was in grade school, to keep me in at recess, so I wouldn't be humiliated,

but they wouldn't. I was always picked last if at all. I remember one time

that the sides were picked to play a game, can't remember which one, and

everyone was picked except me, and the class went off to play and I stood

there. The teacher finally noticed me, and put me on one of the teams, and

they booed. Lord, how painful. Anyway, In junior high I met a girl, Ellen was

her name, and she was 6 feet tall and she became my protecter, and for the

next 3 years, I was accepted, because if I was picked on, at all, she would

beat them up. Wonderful! The teachers strike came to Hortonville,WI, in 1973,

and my friend Ellen was transfered to a private school. When all the bullies

that were left found out I was unguarded, I was picked on for the rest of the

year. I got a job in the guidance office my sophmore year and that protected

me in school for the rest of my high school education. I also found a

boyfriend, an upperclassman, that protected me, even after he graduated. I

was truely blessed. I am so glad that I can now make life easier for my 8

year old, who shows signs of CMT, on top of having autism. I won't be in

school with him, but, by talking to the teachers, the principal, the PE

teacher, and getting together with his class and talking to them about my

boy, and teaching acceptance, I will make a difference. My little boy will

not suffer, like I did. He is now going into 3rd grade and, so far, the kids

in his class are accepting and protective where he is concerned. We can make

a difference with or kids and society at large. Sorry, I got carried

away.... Blessings to you all, Michele

[Guest guest]

Hi, Michele. What a wonderful thing you're doing by actively

involving yourself in your child's school, even more that you are

actually talking to the kids! I have heard about kids turning around

and being supportive after a difficult situation was explained to

them. Sounds like you're doing a fantastic job. Many of us can only

imagine how life would have been different if we had had that kind of

support! You have been blessed and are sharing your blessings! Warm

regards.

Carolyn

> Wow, bringing back those memories are painful. School was a

rollercoaster

> for me, one minute wonderful, and one minute terrible. I was a very

skinny,

> petite, and the typical coward. I never stood up to all the

bullies that

> would shove me down and pick on me because I just couldn't be as

physical as

> they were and I couldn't run away from them. I begged my teachers,

when I

> was in grade school, to keep me in at recess, so I wouldn't be

humiliated,

> but they wouldn't. I was always picked last if at all. I remember

one time

> that the sides were picked to play a game, can't remember which

one, and

> everyone was picked except me, and the class went off to play and I

stood

> there. The teacher finally noticed me, and put me on one of the

teams, and

> they booed. Lord, how painful. Anyway, In junior high I met a girl,

Ellen was

> her name, and she was 6 feet tall and she became my protecter, and

for the

> next 3 years, I was accepted, because if I was picked on, at all,

she would

> beat them up. Wonderful! The teachers strike came to

Hortonville,WI, in 1973,

> and my friend Ellen was transfered to a private school. When all

the bullies

> that were left found out I was unguarded, I was picked on for the

rest of the

> year. I got a job in the guidance office my sophmore year and that

protected

> me in school for the rest of my high school education. I also found

a

> boyfriend, an upperclassman, that protected me, even after he

graduated. I

> was truely blessed. I am so glad that I can now make life easier

for my 8

> year old, who shows signs of CMT, on top of having autism. I won't

be in

> school with him, but, by talking to the teachers, the principal,

the PE

> teacher, and getting together with his class and talking to them

about my

> boy, and teaching acceptance, I will make a difference. My little

boy will

> not suffer, like I did. He is now going into 3rd grade and, so far,

the kids

> in his class are accepting and protective where he is concerned. We

can make

> a difference with or kids and society at large. Sorry, I got

carried

> away.... Blessings to you all, Michele

[Guest guest]

Hi, Michele. What a wonderful thing you're doing by actively

involving yourself in your child's school, even more that you are

actually talking to the kids! I have heard about kids turning around

and being supportive after a difficult situation was explained to

them. Sounds like you're doing a fantastic job. Many of us can only

imagine how life would have been different if we had had that kind of

support! You have been blessed and are sharing your blessings! Warm

regards.

Carolyn

> Wow, bringing back those memories are painful. School was a

rollercoaster

> for me, one minute wonderful, and one minute terrible. I was a very

skinny,

> petite, and the typical coward. I never stood up to all the

bullies that

> would shove me down and pick on me because I just couldn't be as

physical as

> they were and I couldn't run away from them. I begged my teachers,

when I

> was in grade school, to keep me in at recess, so I wouldn't be

humiliated,

> but they wouldn't. I was always picked last if at all. I remember

one time

> that the sides were picked to play a game, can't remember which

one, and

> everyone was picked except me, and the class went off to play and I

stood

> there. The teacher finally noticed me, and put me on one of the

teams, and

> they booed. Lord, how painful. Anyway, In junior high I met a girl,

Ellen was

> her name, and she was 6 feet tall and she became my protecter, and

for the

> next 3 years, I was accepted, because if I was picked on, at all,

she would

> beat them up. Wonderful! The teachers strike came to

Hortonville,WI, in 1973,

> and my friend Ellen was transfered to a private school. When all

the bullies

> that were left found out I was unguarded, I was picked on for the

rest of the

> year. I got a job in the guidance office my sophmore year and that

protected

> me in school for the rest of my high school education. I also found

a

> boyfriend, an upperclassman, that protected me, even after he

graduated. I

> was truely blessed. I am so glad that I can now make life easier

for my 8

> year old, who shows signs of CMT, on top of having autism. I won't

be in

> school with him, but, by talking to the teachers, the principal,

the PE

> teacher, and getting together with his class and talking to them

about my

> boy, and teaching acceptance, I will make a difference. My little

boy will

> not suffer, like I did. He is now going into 3rd grade and, so far,

the kids

> in his class are accepting and protective where he is concerned. We

can make

> a difference with or kids and society at large. Sorry, I got

carried

> away.... Blessings to you all, Michele

[Guest guest]

I didn't know anything was wrong with me as a child. I do remember going to

work as a car hop and crying myself to sleep that night. My legs were in

excruciating pain. Mother told me she thought it was growing pains....she

didn't know anything different at the time. I remember being in a dance group

and performing at a half time basketball game and on one of the leg kicks, I

kicked my shoe right off......lol Embarrassing at the time, but everyone

reacted wonderfully to it. I just thought I was clumsy at times.....I think I

was fortunate not to have known about the CMT then, it let me live a very

normal life....

from

IN

[Guest guest]

I used to play in the Salvation Army Band centuries ago and I also had problems

marching, not being able to see my feet. But like you somehow I managed it as

well - couldn't do it now though.

It was interesting you mentioning watching your feet because when I could

walk I always had my head down watching my feet, I didn't feel safe looking up -

my son does it too.

Sue

Re: surviving school years

In a message dated 7/27/00 10:03:51 PM Pacific Daylight Time,

mel2mars@... writes:

> I went to parochial schools and I dearly wanted to be in the choir, but

since I couldn't stand up and sit down easily, I had to quit. >>

************

I took choir and did band. I played the Clarinet. In choir I was always put

on the top due to my height. I did ok as long as the person next to me and in

front of me understood I needed to hold onto them at times. So as not to fall.

Band was interesting when I got to high school because we had a marching

band. I had a horrible walking and not being able to look down at my feet...

Somehow I managed but I don't know how... LOL

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