Re: special or not...where does a CMT kid fit?

[Guest guest]

Amelia,

I had CMT as a child and did not know it. It was really hard being expected to

be like the other children and not be. I had teachers be really harsh with me

about not putting out the effort and being lazy when running was involved. And

the Presidental Fitness Program was a horror! I actually would run the 50 yard

dash so hard I thought my heart would explode and never did it in less than 9

seconds when the other children would do it in 7. So when it came time for the

broad jump I swung my arms so hard and was detemined to " fly " and I jumped and

skidded on the asphalt on my knees scraping them to the bone.

Now knowing why makes me understand but the emotional scars are still there of

not being " as good " as the other kids.

I think just letting the teacher know so she doesn't expect your child to be

exactly like the other kids would help alot. Teachers know how to hand

" special " children as long as they know what the abilities are.

Now my son that also has CMT wanted to play baseball and all but of course

running was a problem. (He was actually a darn good pitcher though) He did not

want us to tell the coach that he had something wrong and of course the coach

was being harsh with his expectations so we had to step in and say something.

Being that our disability isn't totally obvious sometimes people just don't know

there is something wrong and they expect us to be normal.

I know that just recently I have started using a cane for stability and it has

really helped. I use to have people stare because I walk funny or be impatient

if I walked slowly in front of them but now the cane almost gives me permission

to things am " my " speed.

Cyndi

[Guest guest]

Hi Amelia -

was diagnosed at age 9 - in 4th grade. All along we knew

something was different in the way he walked (on his toes and

pitched forward),in the way he spoke (his speech always slurred when

he was tired), in the way he couldn't grasp the balance issue in

riding a bike or skateboarding...he couldn't keep up in

basketball...it took forever to get someone to pay attention...He

suffered through teachers complaining that he was sloppy in his

written work (although a straight A student), that he didn't hold

his pencil correctly, that he seemed tired all the time.

Getting his diagnosis was such a mixed bag...we were devastated for

him and scared, and at the same time relieved that there was an

identified reason for his symptoms. Does that make sense?

Dealing with school became a main focus. We immediately told his

teachers and the principal. We've found a full range of reactions

from people being very understanding, to those who don't believe

anything is wrong because he looks normal. In middle school

administrations has accused us of enabling him, allowing him to be

lazy and to miss too many days at school. Even with supporting

documentation from his neurologist and pediatrician people are not

always understanding of his needs. It's the nature of life I've

decided.

What you are feeling is something I can relate to completely.

is smart and funny. He is a computer guru and a techno-smart

kid. He used to love drawing and building things. He can't do much

of that anymore because his fine motor skills have deteriorated

despite PT and OT. He has become more withdrawn as his disease has

progressed but we are hopeful that some of that is just due to being

a teenaged boy.

My suggestion, and it's only my opinion because every parent has to

find what works best for their family, is that you should make all

faculty/staff/administration at school know the details of CMT and

exactly what your daughters abilities are. Then, let your daughter

set the standard for how CMT will impact her school life. Instruct

the teachers to be sensitive to fatigue and tell them that you

welcome any and all observations from them about how your daughter

is doing. Fight for a 504 or and IEP.

participated in PE classes until he started having to take a

nap in the nurses office after each PE class in the 5th grade. It

wasn't worth the strain on him, and his neurologist said no more.

He was getting plenty of excercise just walking around the campus.

In the 7th grade he started using a wheelchair to get around the

bigger middle school campus. This year, we got a power assist

chair. His body tells us when it's time to make a change and we

have to listen. If only the teachers would too.

Didn't mean to make this so long...as you can tell I am passionate

about the topic of schools dealing with kids who have CMT.

[Guest guest]

The main thing is to let your child be a kid. Don't hover over her

like some on this group are prone to do. She can do many things even

though she has CMT. It affects everyone differently. Tell the teacher

what her limitations are but don't try to get her treated special.

Your daughter will want to be with her friends and do what they do.

I have a friend with CMT, a guy, who played hs football and baseball

wearing AFOs. He never told his coach what he had or what he was

wearing. He just did his best and enjoyed it. He's still active

hunting, fishing, and playing the drums.

My parents let me do what I wanted to also. I wasn't the best athlete but I was

out there with my friends. I had a great childhood and wouldn't change a thing.

Let your child figure out what her limits are. Don't try to over compensate for

her CMT.

Bob

[Guest guest]

Hi ,

Although I do not have children, I was once a child with CMT, long

before IEPs, 504'S and the Net. Even though I was diagnosed very

early in life, my parents did not make a big deal out of it. I grew

up in a very loving and stable home, and was expected to do chores,

care for pets, go to school, have a social life and try my best, etc.

Throughout my life, I have not made a big deal out of having CMT. And my CMT was

never mentioned to teachers etc. Sure, I fell down on the playground, but so did

some other kids, most likely without CMT. I saw the school nurse as infrequently

as the rest of my classmates. I grew up just like my peers, experiencing all

aspects of life at different ages.

Yes, at times, symptoms were at first difficult to manage, but I

learned much from my mother about simple ways to take care of myself.

She did a fair amount of " be careful, you'll get too tired " ,

but I eventually learned how to relax, take it easy, manage symptoms,

talk to medical professionals, and be responsible for my own

healthcare and wellness.

I was never considered " special " as is common today. I was considered

normal and was totally mainstreamed throughout my schooling. I would have been

horrified if I had been singled out as " special " and outwardly needing

adaptations that looked different from my peers.

A few adaptations on my part were made - like in college and grad school, I

biked all over, instead of walk the large campuses. Ever since junior high, I

simply had a doctor's letter exempting me from P.E. and competitive sports, and

instead spend that time in the library, in study hall, doing homework, or

working on special projects. It amazes me now that I have a gym membership and

use it 4 days a week, but I can work at my own pace, on my own time and schedule

and for as little or long as I want. The pool makes me feel so terrific -

growing up in So. Calif.- I was always 'at home' in water.

Being " Daddy's girl " , I grew up with a strong male role model, and an

extremely optimistic one at that, from whom I learned so much and his

philosophies are within me to this day. If anything, I was thought

of as " a unique creation " , one of a kind, made in the likeness of my

Creator. And that is still how I see myself today.

Gretchen

[Guest guest]

I have found that most of the members of my family with CMT are over achievers.

I think it is our CMT nature to try to keep up even though it is tough . Your

daughter will learn her limits and as long as the teachers can accept her limits

and not push her futher she can do her best without feeling bad for not being

just like the other kids. The main thing is to keep her self esteem up. CMT can

really affect the self esteem if you don't let her know it is OK if she is not

like everyone else, she is who she is, and to be proud of that and what she is

able to do.

Cyndi

[Guest guest]

Great post Gretchen! I think it is very important, however, to once

again stress that each case of a child diagnosed with CMT is unique

to that child. While there are common threads such as fatigue, foot

drop etc., the progression is different in each patient. I disagree

with the post made that some here are overprotective parents...if we

do not advocate for our kids who are progressing at a quicker pace

than anticipated, no one else does. We don't like that everyone has

to be told about 's diagnosis, but it is a necessary evil to

help him be successful in school.

If the disability progresses to the point where a child cannot get

through the halls from class to class without falling, falling

asleep throughout the day, cannot hold a pencil for more than 10

minutes at a time, is harming him or herself by trying to stay

competitive in a sport, it is time to consider other options. We

have a letter stating no PE. Well, nowadays that labels a child

as " special " immediately and let me tell you, middle school boys are

cruel to one another. Kids constantly taunt him about skipping PE.

You were blessed enough to not have that happen so early in your

life! You had a wonderful support system in your family which is

what our family is for our son. He has to take the dog out daily,

clean his room, set the table etc...normal chores for normal kids.

He loves to cook and to bake and like you, he adores the pool. It

makes him feel free.

My husband and I are constantly fighting for to remain in the

mainstream. Others have told us to put him on a track for

a " special " high school diploma. There's nothing wrong with his

mind or his willingness to perservere...he needs accommodations to

lessen the fatigue. Getting peoples attention for that is a

challenge.

Thank you again for your great post - I guess I just wanted to

emphasize the " unique creation " that exists differently in each CMT

patient.

[Guest guest]

Cyndi,

I completely agree. I was not diagnosed until after H.S. Running was so

difficult and it did make things worse to not be able to explain why and made me

try so hard without getting anywhere. It kind of gives you a complex. So, it's

good if your child has an early diagnosis and you use that to at least inform

people. It's not as if you can just work past it if your nerves are dying. So

much more to say yet that's my point at this time. The teachers, especially gym

teachers should be informed.

Dawn

[Guest guest]

Cyndi & Dawn,

I sympathize with you. I wasn't diagnosed until my 40's. PE in

elementary, middle school and high school was terribly traumatic. I

would have loved to have been excused from a few things along the

way...like being chosen last in dodgeball, being laughed at trying to

run the bases, always being the last one around the track, and

failing the physical fitness tests miserably. A little sympathy,

compassion, and being cut some slack occasionally would have been

welcome.

Now that I know I have CMT, the thing that bothers me the most about

PE in school is that no one told my parents that I was struggling.

How can a child fail every part of the Presidential Physical Fitness

Test and the parents not be notified??? It's just wrong IMO. There

should be some guidelines in place.

As for Amelia, I've never had to face this issue, but what is

doing with makes a lot of sense to me. Making the teachers

aware means they will probagbly him slack when needed, belittling

will be less likely, and you are more likely to get feedback on how

your child is doing, since the teacher may pay more attention to the

subtle details. JMO.

[Guest guest]

,

Yeah, having an earlier diagnosis sure would have made my life easier as a

child, but once I was diagnosed it sure did explain so much! So much of what

you and Dawn said could have been me saying it. I can still remember the exact

words my PE teacher said to me about being slow, lazy, not giving any effort.

I know Dr. Phil talks about pivital moments that define who we are and I feel

like that particular teacher because she was so hard on me has had a huge impact

on how I feel about myself and I fight the negativity of it to this day. As a

kid, when I would fall I was told I don't pay attention to what I am doing and

of course my nickname was " Grace " .

I also remember my Mom saying that I seemed to need more sleep than usual.

I truly am an upbeat type of person and today I just go with the flow with the

CMT but these events do haunt me but I try to put them way in the back of my

mind.

My 2 children also have CMT and I was aware of what was going on when I saw the

signs. At least we know why they don't run fast and it is OK.

Cyndi

[Guest guest]

I was never labeled " special " in school and neither was Gretchen, I

believe, there are kids who don't have CMT who aren't the best

athletes too. But we all tried and did our best. Sometimes it's best to let kids

work it out among themselves. There were mom's back then who came to school and

got too involved in what their kid was involved

with, usually to the detriment of their kid. This was way before the

term " hovering " came into use but it was the same. Sure let the teacher

know what is going on, but then back off and let the teachers and the

kids handle it. Your child will be much happier in the end.

Bob

[Guest guest]

Bob,

Let the teacher and the kids handle it! You have got to be kidding!

Times must have changed. Most of my teachers didn't give a Rat's A...

I wish my mother would have gotten involved!

Geri

[Guest guest]

Cyndi,

You're right. It is ok. If my son starts to show any signs; right now he trips

once in a while, I will certainly remind him of all the things he IS good at.

Did you go to school in the Buffalo area BTW? (I think I had the same nasty gym

teachers; academically, my teachers loved me, but, not the gym teachers).

Dawn