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Wow! That teacher has mush for brains. What he/she did was

unforgivable and really centered your kid out. A letter is good but be

sure to follow it up. He/she should apologize to your child in front

of the rest of the students and a short explanation (lack of balance)

of why the stool is being used given. Let us know what happens.

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Thanks , I will follow up for sure. I told the principal that she should

not say that about any kids let alone one with issues. I will keep everyone

updated.

Matt

Re: School and Kids

Wow! That teacher has mush for brains. What he/she did was

unforgivable and really centered your kid out. A letter is good but be

sure to follow it up. He/she should apologize to your child in front

of the rest of the students and a short explanation (lack of balance)

of why the stool is being used given. Let us know what happens.

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Hi Matt. Boy, people can sure be brutal, huh? With our high school freshman,

I've had to help " educate " most of his teachers. They really just didn't

understand at first, & once we had some heart to heart talks, & some CMT

pamphlets they've been a lot kinder. (I've given them all the " Facts about

Charcot-Marie-Tooth disease & Related Diseases " from the MDA.org website. Dec.

2009) Our son is learning how to stand up for himself, slowly, as well.

Do your schools have 4O4 plans? They are individualized educational plans that

take into account health issues. By law the schools here in California, have to

abide by your doctors & your recommendations. Having a place to sit down would

be one of them.

Hopefully this teacher is just ignorant of the needs of your child(ren) & will

quickly become a lot more compassionate as you help them learn. I'd follow up

with the principal & teacher as well.

Let us know how things go.

Kathy

>

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Hello Matt - I hurt for your daughter to have to have dealt with such

insensitivity and ignorance from an " educator " . To be made fun of by a teacher

in front of your peers is unfathomable.

The principal may say that it will be handled...but I would want to know how.

It's your right as a taxpayer. Furthermore...if you are not satisfied with how

it is handled...you should then move on to the the head of the Exceptional

Education Department in your school district and right on up the line. Get an

investigation started. Have kids who heard this from the teacher make

statements. Do not let this go. It doesn't matter that your son may or may not

have this teacher next year. The behavior is inexcusable and if he has problems

in her class it then becomes a discrimination issue. That teacher has no

business working with kids.

We as a society need to really stride forward to help people who are different

for whatever reason. We need to learn to be more accepting and tolerant of

peoples abilities and not be so quick to open our mouths and say things that can

never be taken back.

Didn't mean to pontificate...it just makes me so very mad...

>

> Hi Matt. Boy, people can sure be brutal, huh? With our high school freshman,

I've had to help " educate " most of his teachers. They really just didn't

understand at first, & once we had some heart to heart talks, & some CMT

pamphlets they've been a lot kinder. (I've given them all the " Facts about

Charcot-Marie-Tooth disease & Related Diseases " from the MDA.org website. Dec.

2009) Our son is learning how to stand up for himself, slowly, as well.

>

> Do your schools have 4O4 plans? They are individualized educational plans that

take into account health issues. By law the schools here in California, have to

abide by your doctors & your recommendations. Having a place to sit down would

be one of them.

>

> Hopefully this teacher is just ignorant of the needs of your child(ren) & will

quickly become a lot more compassionate as you help them learn. I'd follow up

with the principal & teacher as well.

> Let us know how things go.

>

> Kathy

>

>

> >

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Hi Kathy, I know. Children or adult does not seem to matter. I had one meeting

with the Principal and their current teacher's. The teacher that passed the

comment had last year, as I said I did not really like her that much

anyways so I was not surprised when I heard this. I think at this point it was

just ignorance about CMT, it's going to take more to educate the educator's. I

have provided them all kinds of info, so I hope over time it will get better.

The strange thing to me is the fact she said it in ear shot of other children.

No teacher in my opinion should say something like that about any child with in

ear shot.

Not sure what a 404 is but they have so far allowed us to do what we need to for

them so that is good. Other then the ignorant comments. I will keep you all

updated as to how it is going. I want another meeting with the staff in a month

or so. Hopefully it will get better.

Thanks

Matt

Re: School and Kids

Hi Matt. Boy, people can sure be brutal, huh? With our high school freshman,

I've had to help " educate " most of his teachers. They really just didn't

understand at first, & once we had some heart to heart talks, & some CMT

pamphlets they've been a lot kinder. (I've given them all the " Facts about

Charcot-Marie-Tooth disease & Related Diseases " from the MDA.org website. Dec.

2009) Our son is learning how to stand up for himself, slowly, as well.

Do your schools have 4O4 plans? They are individualized educational plans that

take into account health issues. By law the schools here in California, have to

abide by your doctors & your recommendations. Having a place to sit down would

be one of them.

Hopefully this teacher is just ignorant of the needs of your child(ren) & will

quickly become a lot more compassionate as you help them learn. I'd follow up

with the principal & teacher as well.

Let us know how things go.

Kathy

>

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Oh, please, everyone! What would happen to this teacher if she said that about a

child of color?! Hmm? Of course, she would be fired (or should be)!! Don't be

fearful of this witch regarding your next child. Bad people are typically

cowards, and when confronted usually go away. And another thing - people don't

generally 'change' after being 'educated', so don't fantasize about fictitious

conversions. Nail this 'teacher' for her evil words.

>

> Well, I guess I have all new topics to discuss now with the kids. This one

came up yesterday. In my kids school they have lockers, they don't lock them

but never the less they have them. One of the issue they have is in the winter

the floors are wet so they cannot sit down on it to put boots on. They can't

balance on one foot, so its hard to put boots on. We got them little fold up

stool that fit in their locker and they can pull them out to use to put their

boots on and off.

>

> My daughter was leaving for school yesterday and mentioned that her teacher

from last year said loud enough that other kids could hear. " is lazy for

using that stool " . I could not believe my ears, a teacher should not say that

about any kids, in ear shot of other's. Its just not right. Let alone a kid

with a known problem. I was just beside myself yesterday. So of course I write

a big note to the Principal, I want it taken care of but I don't want the

teacher to be singled out as will have her next year. He has a harder time

then and I can't imagine how she is going to react to . I never

really liked this teacher much and I guess now I know why.

>

> The Principal said she will take care it so I hope she does. Only time will

tell I guess.

>

>

> Thanks for listening,

>

> Matt (Hamilton, Canada)

>

>

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Hi Matt, Good job. I misstated the name.... 504 plan. Here's the info for us in

the states. http://specialchildren.about.com/od/504s/f/504faq1.htm

I totally understand the isolating a child out infront of everyone (unless you

really study my son, one wouldn't be able to really " see " his diabilitating

issues) He was singled out in class, & called " lazy " & a email was shot to me

stating he was " rude & disrespectful " , when actually he was angry & learning to

stand up to an adult in authority.... something he will probably have to do his

whole life since he lives in this world. After a phone call, this teacher really

Was misinformed about CMT (didn't have a clue) & his tune Did change.. though

the damage was done... I think he & the other students are sure a lot more

respectful, & hopefully a bit more tolerant, and my son continues to learn that

life isn't fair, but he doesn't have to let ignorance make him bitter.

I joined this group because my family is feeling Very alone with CMT stuff here.

By the promo of it seemed like a " positive " group to join. As a newbie it

amazes me the anger that comes out of some of these posts.

I'm glad you're standing up for your children, & thank you for the " kind " reply.

Check into the 504 plan, & hang in there...

Hurtin' for ya.... Kathy

>

> Hi Kathy, I know. Children or adult does not seem to matter. I had one

meeting with the Principal and their current teacher's. The teacher that passed

the comment had last year, as I said I did not really like her that much

anyways so I was not surprised when I heard this. I think at this point it was

just ignorance about CMT, it's going to take more to educate the educator's. I

have provided them all kinds of info, so I hope over time it will get better.

The strange thing to me is the fact she said it in ear shot of other children.

No teacher in my opinion should say something like that about any child with in

ear shot.

>

> Not sure what a 404 is but they have so far allowed us to do what we need to

for them so that is good. Other then the ignorant comments. I will keep you all

updated as to how it is going. I want another meeting with the staff in a month

or so. Hopefully it will get better.

>

>

>

> Thanks

>

> Matt

> Re: School and Kids

>

>

>

> Hi Matt. Boy, people can sure be brutal, huh? With our high school freshman,

I've had to help " educate " most of his teachers. They really just didn't

understand at first, & once we had some heart to heart talks, & some CMT

pamphlets they've been a lot kinder. (I've given them all the " Facts about

Charcot-Marie-Tooth disease & Related Diseases " from the MDA.org website. Dec.

2009) Our son is learning how to stand up for himself, slowly, as well.

>

> Do your schools have 4O4 plans? They are individualized educational plans

that take into account health issues. By law the schools here in California,

have to abide by your doctors & your recommendations. Having a place to sit down

would be one of them.

>

> Hopefully this teacher is just ignorant of the needs of your child(ren) &

will quickly become a lot more compassionate as you help them learn. I'd follow

up with the principal & teacher as well.

> Let us know how things go.

>

> Kathy

>

> >

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May I make a suggestion for those of you out there with kids heading to

school. Talk to the principle before school starts and ask to meet with the

teachers early as possiblu in school year. With my son, he has 7 teachers so

I asked for a meeting with all of them at once. At this meeting I explained

CMT and the specific issues my son has that they should be aware of. If

you don't do this they will not understand and even if they have a 504 do

not expect them to have the correct information and understanding of CMT

issues. It really helped for them to be able to ask questions of me and for

me to respond directly to all the teachers at once.

Lori

From: [mailto: ] On Behalf Of

bkjmsa

Sent: Monday, January 31, 2011 11:14 AM

Subject: Re: School and Kids

Hi Matt, Good job. I misstated the name.... 504 plan. Here's the info for us

in the states. http://specialchildren.about.com/od/504s/f/504faq1.htm

I totally understand the isolating a child out infront of everyone (unless

you really study my son, one wouldn't be able to really " see " his

diabilitating issues) He was singled out in class, & called " lazy " & a email

was shot to me stating he was " rude & disrespectful " , when actually he was

angry & learning to stand up to an adult in authority.... something he will

probably have to do his whole life since he lives in this world. After a

phone call, this teacher really Was misinformed about CMT (didn't have a

clue) & his tune Did change.. though the damage was done... I think he & the

other students are sure a lot more respectful, & hopefully a bit more

tolerant, and my son continues to learn that life isn't fair, but he doesn't

have to let ignorance make him bitter.

I joined this group because my family is feeling Very alone with CMT stuff

here. By the promo of it seemed like a " positive " group to join. As a

newbie it amazes me the anger that comes out of some of these posts.

I'm glad you're standing up for your children, & thank you for the " kind "

reply. Check into the 504 plan, & hang in there...

Hurtin' for ya.... Kathy

>

> Hi Kathy, I know. Children or adult does not seem to matter. I had one

meeting with the Principal and their current teacher's. The teacher that

passed the comment had last year, as I said I did not really like her

that much anyways so I was not surprised when I heard this. I think at this

point it was just ignorance about CMT, it's going to take more to educate

the educator's. I have provided them all kinds of info, so I hope over time

it will get better. The strange thing to me is the fact she said it in ear

shot of other children. No teacher in my opinion should say something like

that about any child with in ear shot.

>

> Not sure what a 404 is but they have so far allowed us to do what we need

to for them so that is good. Other then the ignorant comments. I will keep

you all updated as to how it is going. I want another meeting with the staff

in a month or so. Hopefully it will get better.

>

>

>

> Thanks

>

> Matt

> Re: School and Kids

>

>

>

> Hi Matt. Boy, people can sure be brutal, huh? With our high school

freshman, I've had to help " educate " most of his teachers. They really just

didn't understand at first, & once we had some heart to heart talks, & some

CMT pamphlets they've been a lot kinder. (I've given them all the " Facts

about Charcot-Marie-Tooth disease & Related Diseases " from the MDA.org

website. Dec. 2009) Our son is learning how to stand up for himself, slowly,

as well.

>

> Do your schools have 4O4 plans? They are individualized educational plans

that take into account health issues. By law the schools here in California,

have to abide by your doctors & your recommendations. Having a place to sit

down would be one of them.

>

> Hopefully this teacher is just ignorant of the needs of your child(ren) &

will quickly become a lot more compassionate as you help them learn. I'd

follow up with the principal & teacher as well.

> Let us know how things go.

>

> Kathy

>

> >

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I think anger is natural when you are socially isolated, your needs

are ignored and your feelings trampled on regularly. And, we can

display a little anger on this list because we are all in the same

boat. Anger is healthy. Holding it all in can really mess you up.

We'd be branded as slightly nuts if we spoke like this on any other

site.

I don't go around angry, I'm fairly well-balanced, I think, but I do

stick up for myself and others with disabilities through my newspaper

column, regular advocacy and my websites.

If you educate yourself, you can teach others. Knowledge is power. I'm

taking an online course on Visitability through U. of Buffalo and

intend to complete the entire program which includes a great deal on

Universal Design and everything you need to know to clue others in.

It's just more of what I already know. A gal's gotta do what a gal's

gotta do!

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When I was 12, I remember a particularly unkind gym teacher who tormented me.

(My CMT was at that time undiagnosed, and I guess he felt justified in taking

pot-shots at the clumsy, slow kid in the class.) During the 600 yard-dash, after

all the other kids had finished, I had about 50 yards to go. He began chanting,

" Come on, Old Grandma " , with the entire class joining in. (Whether I had CMT or

was just an awkward, unathletic kid... no matter... that behavior, for whatever

reason, was abusive.) As I recall, nobody intervened on my behalf, and it has

taken decades to reframe that experience. (I now realize how desperately unhappy

his life must have been and wonder what trauma he had endured to become such a

sadist. I still pray for him.I also realize that what he did was not just

harmful to me, but it harmed the entire class.)

I share this primarily as encouragement to parents that informing educators

about CMT is essential and being unwilling to allow them to harm children

(anybody's children!) is our job as adults. Kids need to know that their

parents/and other adults will advocate on their behalf when some adults are

unkind, misinformed, or worse.

Matt, the teacher who labeled your child as " lazy " in front of classmates needs

to know that is harmful behavior. (It is harmful for any child whether they are

slow because they have a disabling condition, or even if they are, if fact,

truly a little bit lazy.) All kids need to be able to trust the adults in their

lives to be advocating on their behalf.

(Passionate about this subject...)

Lynna

From: no_reply

Date: Mon, 31 Jan 2011 16:13:40 +0000

Subject: Re: School and Kids

Hi Matt, Good job. I misstated the name.... 504 plan. Here's the info for us in

the states. http://specialchildren.about.com/od/504s/f/504faq1.htm

I totally understand the isolating a child out infront of everyone (unless you

really study my son, one wouldn't be able to really " see " his diabilitating

issues) He was singled out in class, & called " lazy " & a email was shot to me

stating he was " rude & disrespectful " , when actually he was angry & learning to

stand up to an adult in authority.... something he will probably have to do his

whole life since he lives in this world. After a phone call, this teacher really

Was misinformed about CMT (didn't have a clue) & his tune Did change.. though

the damage was done... I think he & the other students are sure a lot more

respectful, & hopefully a bit more tolerant, and my son continues to learn that

life isn't fair, but he doesn't have to let ignorance make him bitter.

I joined this group because my family is feeling Very alone with CMT stuff here.

By the promo of it seemed like a " positive " group to join. As a newbie it

amazes me the anger that comes out of some of these posts.

I'm glad you're standing up for your children, & thank you for the " kind " reply.

Check into the 504 plan, & hang in there...

Hurtin' for ya.... Kathy

>

> Hi Kathy, I know. Children or adult does not seem to matter. I had one meeting

with the Principal and their current teacher's. The teacher that passed the

comment had last year, as I said I did not really like her that much

anyways so I was not surprised when I heard this. I think at this point it was

just ignorance about CMT, it's going to take more to educate the educator's. I

have provided them all kinds of info, so I hope over time it will get better.

The strange thing to me is the fact she said it in ear shot of other children.

No teacher in my opinion should say something like that about any child with in

ear shot.

>

> Not sure what a 404 is but they have so far allowed us to do what we need to

for them so that is good. Other then the ignorant comments. I will keep you all

updated as to how it is going. I want another meeting with the staff in a month

or so. Hopefully it will get better.

>

>

>

> Thanks

>

> Matt

> Re: School and Kids

>

>

>

> Hi Matt. Boy, people can sure be brutal, huh? With our high school freshman,

I've had to help " educate " most of his teachers. They really just didn't

understand at first, & once we had some heart to heart talks, & some CMT

pamphlets they've been a lot kinder. (I've given them all the " Facts about

Charcot-Marie-Tooth disease & Related Diseases " from the MDA.org website. Dec.

2009) Our son is learning how to stand up for himself, slowly, as well.

>

> Do your schools have 4O4 plans? They are individualized educational plans that

take into account health issues. By law the schools here in California, have to

abide by your doctors & your recommendations. Having a place to sit down would

be one of them.

>

> Hopefully this teacher is just ignorant of the needs of your child(ren) & will

quickly become a lot more compassionate as you help them learn. I'd follow up

with the principal & teacher as well.

> Let us know how things go.

>

> Kathy

>

> >

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Thanks Kathy, I try and keep everything positive. Its hard some days, very hard

but there is enough negativity in CMT itself. Let alone everything else. I

hear you about standing up to " authority figures " . My daughter had a supply

teacher the other day and they were making her do stuff in gym she should not.

I tried to get her to stand up to them, but its hard. Try and tell an 11 year

to talk back to a teacher, especially one they don't know. I told her to just

go the principal and she would understand and no harm would come. Easier said

then done.

Good for him to stand up for himself, something we all have to learn as time

goes on. Very hard for a child to stand up to a teacher.

Thanks

Re: School and Kids

>

>

>

> Hi Matt. Boy, people can sure be brutal, huh? With our high school freshman,

I've had to help " educate " most of his teachers. They really just didn't

understand at first, & once we had some heart to heart talks, & some CMT

pamphlets they've been a lot kinder. (I've given them all the " Facts about

Charcot-Marie-Tooth disease & Related Diseases " from the MDA.org website. Dec.

2009) Our son is learning how to stand up for himself, slowly, as well.

>

> Do your schools have 4O4 plans? They are individualized educational plans

that take into account health issues. By law the schools here in California,

have to abide by your doctors & your recommendations. Having a place to sit down

would be one of them.

>

> Hopefully this teacher is just ignorant of the needs of your child(ren) &

will quickly become a lot more compassionate as you help them learn. I'd follow

up with the principal & teacher as well.

> Let us know how things go.

>

> Kathy

>

> >

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I understand your suggestion, and think it's a good first step. My experience,

however, in countless ARDs, court, mediation, etc., has been a lot of

'professional' folks are just plain mean AND crazy. Do we sit down with multiple

teachers, etc., for children/people of color? Hmmm? No. At this point in history

folks should know how to appropriately, and politely, interact with a

child/person with a disability.

> >

> > Hi Kathy, I know. Children or adult does not seem to matter. I had one

> meeting with the Principal and their current teacher's. The teacher that

> passed the comment had last year, as I said I did not really like her

> that much anyways so I was not surprised when I heard this. I think at this

> point it was just ignorance about CMT, it's going to take more to educate

> the educator's. I have provided them all kinds of info, so I hope over time

> it will get better. The strange thing to me is the fact she said it in ear

> shot of other children. No teacher in my opinion should say something like

> that about any child with in ear shot.

> >

> > Not sure what a 404 is but they have so far allowed us to do what we need

> to for them so that is good. Other then the ignorant comments. I will keep

> you all updated as to how it is going. I want another meeting with the staff

> in a month or so. Hopefully it will get better.

> >

> >

> >

> > Thanks

> >

> > Matt

> > Re: School and Kids

> >

> >

> >

> > Hi Matt. Boy, people can sure be brutal, huh? With our high school

> freshman, I've had to help " educate " most of his teachers. They really just

> didn't understand at first, & once we had some heart to heart talks, & some

> CMT pamphlets they've been a lot kinder. (I've given them all the " Facts

> about Charcot-Marie-Tooth disease & Related Diseases " from the MDA.org

> website. Dec. 2009) Our son is learning how to stand up for himself, slowly,

> as well.

> >

> > Do your schools have 4O4 plans? They are individualized educational plans

> that take into account health issues. By law the schools here in California,

> have to abide by your doctors & your recommendations. Having a place to sit

> down would be one of them.

> >

> > Hopefully this teacher is just ignorant of the needs of your child(ren) &

> will quickly become a lot more compassionate as you help them learn. I'd

> follow up with the principal & teacher as well.

> > Let us know how things go.

> >

> > Kathy

> >

> > >

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Lynna,

WOW! Your story sounds SO much like my middle school experience! My

blood boils every time I think of that bastard of a gym teacher I had

back then. I was always the clumsy, slow, quickly tired kid. The torture

of gym class was just horrible. We had a history of bad feet and ankles

in the family, but I was the first to have an official name and to be

told this was a REAL condition, but that did not come until I was in

college. We were walking across the campus one afternoon and I twisted

my ankle in a hole in the grass. The others got their usual chuckle, and

I laughed with them, even though I was hurting tremendously inside and

out. I went home, told my parents I was doing something about these

ankles, and called an orthopedic. He did an exam, told me he had an

idea, sent me to the neurologist (oh what fun EMG's were back then with

all the needles!), and voila! The ortho was right - I had this thing

called CMT. A little therapy, learn to walk a little different, on with

life. BUT, I never forgot or forgave that SOB gym teacher.

Fast forward a couple years (or 10 or 12) and we are at Back-to-School

Night at the beginning of our son's second grade year. The gym teacher

pulls as aside and says there is something different about our son. He

has so low muscle tone, tires so easily, cannot do most of what the

others can - but never lets it stop him from trying and giving it his

all. Lightbulbs went off immediate (and flashbacks to my own gym

classes). Off to the MDA Clinic and eventually the full Athena work up.

Yup, he has it too.

Imagine the difference in gym class experiences. Amazing teacher for

him, but for me...

Now, a few years later, we move back to my home town and go to enroll

our kids in school. At the time, the market was booming here, and houses

sold in hours in this town (sure not the case now!). We end up in the

same town, but on the other side of town - different schools but same

district that I attended for what I thought was so many years ago. Lucky

for me because when I went on the district website and looked at my old

schools, I found that rat-bastard SOB was still a gym teacher there! I

cannot imagine what I would have done had my son ended up in that

school! Plus, all these years later, imagine the old coot is still

teaching! Must be doing drills from his wheel chair!

Now my youngest is ready for middle school and that teacher is suddenly

in another of the elementary schools. I hope he does not end up in the

middle school over here. I may not be able to control myself!

But when I think of him, I try to think of this special angel of a

teacher that made us look at my son in an objective light, and got him

started on the track to do all we can for his CMT.

Mark

>

>

> When I was 12, I remember a particularly unkind gym teacher who

tormented me. (My CMT was at that time undiagnosed, and I guess he felt

justified in taking pot-shots at the clumsy, slow kid in the class.)

During the 600 yard-dash, after all the other kids had finished, I had

about 50 yards to go. He began chanting, " Come on, Old Grandma " , with

the entire class joining in. (Whether I had CMT or was just an awkward,

unathletic kid... no matter... that behavior, for whatever reason, was

abusive.) As I recall, nobody intervened on my behalf, and it has taken

decades to reframe that experience. (I now realize how desperately

unhappy his life must have been and wonder what trauma he had endured to

become such a sadist. I still pray for him.I also realize that what he

did was not just harmful to me, but it harmed the entire class.)

>

> I share this primarily as encouragement to parents that informing

educators about CMT is essential and being unwilling to allow them to

harm children (anybody's children!) is our job as adults. Kids need to

know that their parents/and other adults will advocate on their behalf

when some adults are unkind, misinformed, or worse.

>

> Matt, the teacher who labeled your child as " lazy " in front of

classmates needs to know that is harmful behavior. (It is harmful for

any child whether they are slow because they have a disabling condition,

or even if they are, if fact, truly a little bit lazy.) All kids need to

be able to trust the adults in their lives to be advocating on their

behalf.

>

> (Passionate about this subject...)

>

> Lynna

>

>

>

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Hi, Matt

I never thought about changing shoes. Glad I live in the desert. Anyway as

part of our lawsuit with the school district we asked for sensitivity

training for similar problems.

I think you need to write down everything that this teacher has said. Keep

a record and consider making a request that she have some type of

awareness training. She hassles your kids she must do it to others.

In a message dated 1/29/2011 9:48:10 A.M. Pacific Standard Time,

mm.morse@... writes:

Well, I guess I have all new topics to discuss now with the kids. This one

came up yesterday. In my kids school they have lockers, they don't lock

them but never the less they have them. One of the issue they have is in the

winter the floors are wet so they cannot sit down on it to put boots on.

They can't balance on one foot, so its hard to put boots on. We got them

little fold up stool that fit in their locker and they can pull them out to use

to put their boots on and off.

My daughter was leaving for school yesterday and mentioned that her

teacher from last year said loud enough that other kids could hear. " is

lazy for using that stool " . I could not believe my ears, a teacher should not

say that about any kids, in ear shot of other's. Its just not right. Let

alone a kid with a known problem. I was just beside myself yesterday. So of

course I write a big note to the Principal, I want it taken care of but I

don't want the teacher to be singled out as will have her next year. He

has a harder time then and I can't imagine how she is going to react

to . I never really liked this teacher much and I guess now I know why.

The Principal said she will take care it so I hope she does. Only time

will tell I guess.

Thanks for listening,

Matt (Hamilton, Canada)

[Non-text portions of this message have been removed]

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Hello Mark and All,

I well remember my Junior High School gym classes and the time I was

asked to try out for the basketball team as I had shot up over 6 feet

tall. The very first thing they asked me to do was to dribble down the

court and make a layup shot. I got halfway and stumbled over the ball

falling on my knees and thoroughly skinning them. That was the end of

that. It happened again in High School. By that time I had a little

muscle and coordination so things went better and I ended up second

string center on the JV squad. They had high hopes for me in basketball

but it did not happen. Somehow I knew that the workouts were good for me

in developing some strengthened muscles. It was embarrassing at the time

but in the end I think it did me some good.

My coaches and fellow players

were tolerant and it was not as traumatic as the time in the Army Basic

Training when my barracks Sergeant hollered in my face that he could do

more pushups with his male m***** than I could do with my arms. It took

four days to relieve the overstrained shoulder muscles from that

incident. After his bluster, he sent me along into the mess hall anyway.

Knowing then that I had HNPP would have helped my ego some but probably

not changed anything else. The Army did finally accommodate me in it's

own way and I served out my draft time as a Test Engineer.

I look back on these and similar occasions in my life with a measure of

amusement and thank the ability to weather them with grace and dignity

intact.

Age 75 EdM from NH

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Ed,

Thanks for the nice note. I hope you do not think I am that riled up about my

condition all the time. I am not. I accept who I am, and I am willing to be the

example of what this does to spread the word, let CMT be known, and help do what

I can to make this world a world without CMT!

Mark

(NJ, USA, 48, son of, father of, brother of, cousin of, nephew of, uncle of,

grandson of, great-grandson of CMT'ers like me!)

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The MDA has some info in thier Quest Magazine about dealing with schools.

They have advocacy info page regarding schools and a disease specific class

room accomdation sheet. The reps can also do presentations in the school with

student and teachers . They can also assist/attend 504 and IEP meetings. They

have a teacher's guide as well youu can order free of charge. If you have an

MDA rep maybe they could help.

JoAnn Haase 46 CMT1A Chicago

> >

> >

> > When I was 12, I remember a particularly unkind gym teacher who

> tormented me. (My CMT was at that time undiagnosed, and I guess he felt

> justified in taking pot-shots at the clumsy, slow kid in the class.)

> During the 600 yard-dash, after all the other kids had finished, I had

> about 50 yards to go. He began chanting, " Come on, Old Grandma " , with

> the entire class joining in. (Whether I had CMT or was just an awkward,

> unathletic kid... no matter... that behavior, for whatever reason, was

> abusive.) As I recall, nobody intervened on my behalf, and it has taken

> decades to reframe that experience. (I now realize how desperately

> unhappy his life must have been and wonder what trauma he had endured to

> become such a sadist. I still pray for him.I also realize that what he

> did was not just harmful to me, but it harmed the entire class.)

> >

> > I share this primarily as encouragement to parents that informing

> educators about CMT is essential and being unwilling to allow them to

> harm children (anybody's children!) is our job as adults. Kids need to

> know that their parents/and other adults will advocate on their behalf

> when some adults are unkind, misinformed, or worse.

> >

> > Matt, the teacher who labeled your child as " lazy " in front of

> classmates needs to know that is harmful behavior. (It is harmful for

> any child whether they are slow because they have a disabling condition,

> or even if they are, if fact, truly a little bit lazy.) All kids need to

> be able to trust the adults in their lives to be advocating on their

> behalf.

> >

> > (Passionate about this subject...)

> >

> > Lynna

> >

> >

> >

>

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