Re: Time to move on....

[Guest guest]

Hi ,

I am so sorry you had a rough experience here. I only hope you hang in with

the group as it is still a wealth of information and support.

Perhaps not the support we expect sometimes. But it certainly gets the juices

flowing. I admit and proud of the fact that I was and still am a hovering Mom

over my Son.. You better believe I was right there involved in what ever matter

came up for my Son whether it be teasing or just not doing well in school.. I

don't regret it.. I asked my Son how he felt about me being his shadow in

school.. He said " Mom no one was a tougher Mom then you and when I needed you I

knew I could count on you " . There were times I let him fight his own battles as

long as the battle was a fair fight.

He now is a productive adult well adjusted and loving and he is very attuned to

other peoples needs. He is 31 and still a Mama's boy. lol But he has his own

life and we look back at the days I fought some of his battles and we laugh and

sometimes I tear up, it was worse on me then him. So every ones life is

different. If you feel you are doing the right thing for your Son.. then by

all means continue and don't let anyone tell you different.. Being a Mom is

difficult enough to a physically abled child let alone one that needs a tad

extra loving care and support.

Carol

[Guest guest]

Hi ,

I hear you. And yes, is a place where people with CMT,their families and

friends can come to share experience, managing CMT or ask questions and

receivehelp and hope.

Our rules are clear. (Anyone who is not clear, go to the About File and

read!) Because I read every post before it is sent out, I review it to make sure

it fits within our guidelines. I also edit the text and correct spelling for

streamlining the reads. If a post doesn't fall within the guidelines set forth,

it is automatically deleted (as people voice their " opinions " on topics they

have no experience with, or as people who wish to transgress to non-CMT topics)

If anyone thinks these are " Gretchen's rules " , please know there * is * a

co-moderator, Rick, so this is just not " all about G " .

So many people here have found great help, understanding, hope and caring in a

very rocky world with a very much unknown neuromuscular disorder facing a very

unknown future.

As for those persons who offer their 'advice' who may try to explain how CMT was

for them as a kid...that gets wacky sometimes when it comes to telling a parent

what to do. I have great admiration for all our parents at because it

gives me an entirely different view of CMT, and makes me want to find out * more

* about CMT (not only genetics, but how people live, assistive devices they use,

issues with sleep, breathing, exercise, their hobbies, talents, interests, you

name it. It makes me want to reach out, learn more, understand the syndrome on

other levels.

You should see all the wacky posts that I get. That plus flames, temper

tantrums, sarcastic remarks, stalkers and more. Deletes are about one 10th of

all posts.

was founded on the basis of * experiential sharing * - what works for you,

what doesn't, etc. In addition, research news is posted for information and to

keep members up to date on what's happening on the scientific frontier. CMT

related issues like SSDI/SSI, disability access, exercise, and more are all

included.

I wish everyone would understand this is not a 'free for all' forum; is a

private place where we are serious about learning more about CMT and all it's

idiosyncrities. is not about 'free speech'. We are focused on CMT. Period.

Those who are not on board with this will attempt to hijack the subject or offer

'advice' when not asked. It is a shame people do not understand pure simplicity

of rules and manners, in life and also in our Network.

, I too, have thought of moving on * many * times from . Mostly

because of the wackiness of posts and lack of respect some have for me as

moderator and my work bringing CMT information to those who need it. But I'm

still here because I want to learn more, I need to learn more.

I know you are doing so much for and I applaud your efforts. One reason I

did not have children is because I felt I was not up for the task of raising

children, especially if a baby inherited it from me. So I am educated more when

parents share their dilemnas as well as their hopes and dreams.

The phonies eventually eliminate themselves and we go on. As goes into our

11th year this month, for the most part, we are doing exceedingly well. I talked

with a member of the MIHG research team this afternoon about my participation in

their Type 2 genetic research, and mentioned I started . Her remark was " oh

I'm there too " ! reaches out way beyond just one member sharing with

another one.

There is value, quality, and a positive focus here, that I have not found

elsewhere and it will stay that way as long as Rick and myself are involved.

I'm not trying to talk you out of leaving, but sharing my thoughts in light of

another's disrespect for our simple rules. I would miss you because you bring

another side of CMT to me and it sheds light on what my parents might have

talked about, what they worried about, how they felt about raising a child with

CMT. , thank you for your sharing and caring so much, you make the world a

better place.

Hope you and your family have an enjoyable long weekend.

Gretchen

[Guest guest]

Thanks to Gretchen & the members of for this group and the info that I get

each day from the posts.

- I hope that you won't leave the group. It is so nice to read your

posts. I have a 17 mos old son - who does not have CMT - I do. I had parents

who were there for me. I needed it and they were up for the task. You sound

like a fantastic mom. I'm sure that your child will reap the rewards of such a

caring upbringing.

I believe that women in this society are sometimes scrutinized in ways that men

are not. People sometimes project issues that they have with their own moms on

other moms. For this reason I am very protective of my personal life, my role as

a mother, wife, individual. But you are not alone in your walk.

Chris

[Guest guest]

I think I heard that statement before. " Over protective " and I don't agree with

it. What just sit back a let your disabled child be bullied? What kind of

parenting is that? The old way of thinking is " let your kid deal with it " .

Well that's what I had to do and it didn't work. Wish I could have been home

schooled, then I wouldn't have had to deal with the spoiled brats.I think I

would have learned more!

If my mother would have been more sensitive I think that would have helped too,

I felt so alone trying to deal with everything.

Just follow you hart and keep being a good mom. Don't pay attention to others!

What do they know.they don't know your child's needs?Like Dr. Spock didn't know

his butt from a hole in the ground either!

Geri

[Guest guest]

Each child is different. My son was being bullied in school. I got very upset

and was going to school to deal with the frustration. My son with tears in his

eyes, asked me please to stay away from it and not to go because it would be

really embarrassing for him if I went to school. He said, the kids would bother

him even more and for the entire school year. So, we as parents, try as best we

can but, sometimes we also, have to listen to them. My mother didn't care

because she didn't know better so, I try as best I can with my boys but, I also

respect them.

Betania

From: zchristinemcguire@...

Date: Fri, 4 Sep 2009 19:29:54 -0700

Subject: Re: Time to move on....

Thanks to Gretchen & the members of for this group and the info that I get

each day from the posts.

- I hope that you won't leave the group. It is so nice to read your posts.

I have a 17 mos old son - who does not have CMT - I do. I had parents who were

there for me. I needed it and they were up for the task. You sound like a

fantastic mom. I'm sure that your child will reap the rewards of such a caring

upbringing.

I believe that women in this society are sometimes scrutinized in ways that men

are not. People sometimes project issues that they have with their own moms on

other moms. For this reason I am very protective of my personal life, my role as

a mother, wife, individual. But you are not alone in your walk.

Chris

[Guest guest]

,

Though I'm not insensitive to your feelings, you certainly have contributed to

the caustic comments, so I can't entirely sympathize with you.

However, I have the severe form of CMT, was raised in a family with no other

history - at all - of any type of disability, and today have two children who

also have the severe form of CMT. So, I understand these issues very intimately,

perhaps better than most people - anywhere - and (not being disrespectful, just

honest) definitely better than my parents.

Best wishes to your son, in every way.

Augold

[Guest guest]

Very well said Betia. I read an article the other day about back to school

issues. It was from a school official saying it is much better to let kids

handle their problems and issues themselves and not be a howering parent. I know

I would have felt the same way your son would have felt had you gone to school

to fight his battles. Kids have a way of working out things among themselves.

Lately I have been talking to a teenager with CMT who contacted me through the

im. He said his dad had CMT too. This kid wasn't wearing AFOs yet but he was

asking me questions about mine. He also said he got kidded last year by some

kids at school about how he walked. He laughed and said he nearly beat one of

them up. Now he says they are some of his best friends and he has even dated a

girl that was part of that group.

I'm sure he didn't want his mom there telling the principal and the teachers

what to do. He just worked it out. Again, let your kids be kids. Some have

stated that only a parent can know these things. Well I went to school with CMT

and I feel that I have some input in the matter too. Plus I have acted as a

mentor to a kid who's dad died when he was 13.

I have also seen a poster talk about not hiding your disability, what is that

about? Do you want your kid walking around with a tag on saying he has CMT? I

always tried to do my best in school. I didn't allow my CMT to be a reason why I

didn't do something or didn't have friends. At my school we had a boy who was

blind and went to class with us. He learned the route around school early on and

didn't want anyone walking him to class. We did a project together once. He only

wanted to be treated like any other student.

There was also another guy with CMT who wore braces too. He was active in the

band and in student council. There was also a boy who had had polio and wore one

brace. He was very popular and had lots of friends. He had the wildest sense of

humor about his disability. Once a teacher said something about brace yourself.

He spoke up and said " don't worry, I am " . The whole class broke up including

the teacher.

Kids just want to fit in. They don't want or need adults, well meaning or not,

to fight their battles for them or try to over compensate for them.

Bob