Re: special or not..appreciating my parents advocacy

[Guest guest]

I was lucky to have understanding parents who

advocated for me. This was essential during

elementary school.

I was an excellent student who spent extra time on

penmanship yet was always marked down for it. Gym

class offered its own challenges. One gym teacher was

especially accommodating another yelled at me and

called a special meeting with my parents because I

could not effectively walk on the balance beam.

The bus driver felt that I should walk to the bus stop

because I looked normal.

My mother and father dealt with these situations as

they arose. This advocacy helped with my fatigue and

pain levels which in turn allowed a sense of normalcy.

Much was alleviated after re constructive surgery. I

was able to walk farther and participated in more gym

activities. My condition improved so much that I

thought that the CMT was gone.

The knowledge of my diagnosis never offered the

opportunity of taking an easy road - it always

presented more challenges, but I think that it was

beneficial to face the challenges with knowledge and

support.

My husband and I are expecting our 1st child in March.

We will have him genetically tested after he is born.

I hope that he doesn't have CMT, but if he does he

will have the same opportunities - he will know his

diagnosis - he will learn to be his best advocate and

he will be able to rely on us.

Chris

[Guest guest]

- Thank you for your post! Congratulations on the upcoming

birth of your first child!

Thank you for your support of advocacy by parents for their CMT

children. I've always been overweight to one degree or another and

when I was in 6th grade we had a female PE teacher who insisted that

every student do a head stand. Now I tried gamely to do the balance

beam, the horse, the uneven bars etc...but head stands were

impossible. (I was also 5'9 by then) Inevitably I wound up in tears

after each PE class because she had called me names and made fun of

me in front of the class. Back then, late 1960's parents didn't get

involved unless it was a serious academic issue. One day coach

demanded that I do a headstand while backed up to the gym wall for

stability. My back collapsed and I wound up flat on my back for 2

weeks and have had back problems ever since. My folks went to task

with the school for which I am grateful, even though it was a little

late. I don't have CMT,but my son does. And I will do whatever is

necessary to help him be successful.

The comments being made about over-protective parents and hovering

and such lead me to believe that there are deep-rooted psychological

scars that have been left by parents who went too far on

the " toughen up and live with it " path. That was the nature of the

times as well. Some of us have learned from those mistakes.

I think your child is so blessed to have parents like you who will

protect and guide him throughout his life regardless of what

challenges he faces.

We don't ever approach anything with " guns blazing " - my husband and

I handle each issue as it comes about. As 's condition

progresses, more issues arise. My prayer is that his CMT would hold

up and allow him to regain some normalcy for a while. It is our

hope that his surgery and the one to follow will help him do that.

Please keep us posted! Sending hugs and best wishes!

[Guest guest]

Good for you guys....your going to be wonderful parents...

Geri

[Guest guest]

I think there is a huge difference between hovering and just making the

allowances for a child with CMT so they don't feel stupid and humiliated in

front of a gym class that is being asked to do things they just can't do like

the balance beam, running, jumping, etc.

No one knew I had CMT when I was a child and I was expected to perform as the

" normal " children and was humiliated by teachers and other students when I

couldn't and it was hard knowing I was trying my best and being told I was lazy!

Horrible memories there.

To this day (I am 51) I try to look like there is nothing wrong with me by

holding on to things and leaning up against something when I am standing still

but I often wonder if my neighbors think I drink when they see me stumble or

fall in my yard alot or always do the " off balance dance " on my sloped driveway

when I get out of my car. I told my husband this is like trying to act " normal "

after you have had too much to drink!

Sometimes I think it would be easier to just wear a T Shirt that says " Yes, I

know I am walking funny " . I actually had someone ask me if my shoes were heavy

because I walked like my shoes where heavy! I am glad it is my body and not my

brain/mouth that doesn't work properly! LOL

Cyndi

[Guest guest]

Cyndi,

Thanks for making me smile! My kids and I now laugh about it

when I go sailing down the driveway (mine has a mean slope too)

sideways trying to catch up to my feet. Now that we know why we are

clumsy we can get a giggle out of it.

When I was a kid, though it was hard. I was a fit, healthy kid but hopeless in

gym or any sport. I was always teased and picked last. I got the " lazy " label a

lot, too. I think gym teachers in the 21st century are better about the self

esteem issues and stopping negative behavior of the other children, but it sure

helps my kids to know there is a reason and it's not their fault and they can

explain it to their teachers and friends.

My parents were great but assumed if I was complaining about the stuff they

typically experienced that it must be normal for everyone and I needed to just

suck it up and try harder. It wasn't until I got

married that I realized that these symptoms are not just normal

things everyone deals with, just my whole family!

Keep smiling Holli