Re: How to help a teacher understand CMT better?

[Guest guest]

What a wonderful idea, Martha!

If Gretchen draws a preliminary one up she could post it and ask for

input and comments. I'm sure we could collectively come up with

something in short order that would do beautifully.

Some of you may recall the laminated wallet cards that we gave out

through CMT International. That didn't take a doctor to do and they

helped thousands of people better understand CMT. This handout Martha

is proposing would do the same thing. We can do this!

, 68, CMT2a, Ontario, Canada, no longer walking, hands very weak

hands, vocal cord paralysis and of you think I'm going to type that

every time you're nuts

[Guest guest]

An informative presentation has already been made. Perhaps you may want to get

in touch with Ouellette from the CMTA and take a look at hers. This

taught her son's classmates about his CMT and I'm sure would also be helpful for

adults.

She is also a member, so perhaps she will see this and be in touch.

[Guest guest]

Hi Matt:

Sorry to come into this so late..have been away from my email. I'm

sorry to hear that you've had such a hard time...no teacher should react

the way they did.

We've been put in touch with a disability advocate consultant here in

Ontario, Moir..he's great. We met with him once and spoke on

the phone a number of times..he had many practical suggestions about

developing the Provincial IEP (individual education plan) for Gavin (the

equivalent of a 504) and IPRC (Identification, Placement and Review

document that lays out what Gav 'exceptionality' is and how the school

will accommdate it. Helped us find the right wording on letters to

school etc. that really made them move, after foot dragging. Our

experience has been that once a better drafted IEP, letters etc. were in

place the Principal took more notice. That said, I am eternally

frustrated that each year the same issues arise over and over, like

Groundhog day. It's constant work to keep things running smoothly.

Each year I've done an orientation for his class and teachers that has

been such a hit the class has actually asked me to do it a second time

in the year so more of the kids can participate! Here is a precis (it

was based in part on Ouellette's post on the old CMTA site).

First I made a model of a CMT nerve out of an ikea stuffed toy

snake...covered it in panty hose and then used elastic bands to make

kinks in the nerve to represent demyelenation. Explained how the signal

slowed down having to 'jump' the gaps and then had 2 volunteers to

demonstrate how that makes a diff to how fast Gav can move. Both kids

had to run a short distance..they raced each other...and then they had

to do the same thing hopping...of course they were slower and admitted

they were more tired hopping. (squaring them off boys vs girls was a

hit). This was to explain fatigue from a source you can't see.

After that 10 kids got to put on a selection of Rob's shirts and socks

on their hands (fresh of course!)..they had a race to see who could do

up the buttons on the shirt fastest with their 'CMT hands'...much

hilarity.

Finally I had 2 volulnteers square off over a Mancala game...the board

with shallow holes that you play with marbles or glass beads. They had

socks on their hands and had to race each other moving the 10 beads one

at a time into each hole and then down the board to the end...These 2

were mimicking how hard fine motor control is, ie writing etc.

I also asked them to raise their hand if they had a dad who was bald. A

few hands went up...I asked them if it changed what type of dad they

were...of course the answer was no..so I made the point CMT is like

that...something you have, but not who you are. One boy with peanut

allergy then quickly said it's the same thing with his allergy. They

get it.

The Learning Support Teacher, Educational Assistant, and 2 teachers all

said they really understood things so much more after this, despite

having had meetings where I described CMT. It truly is hard for people

to understand sometimes.

The amazing thing is that Gavin has never been teased for his CMT since

we've been doing this in class starting in grade 1...Rob was out skating

with him at our local rink last week ( it's a challenge but he's

trying) and boys from his class went out of their way to include him in

a game of hockey. They were so diligent in passing the puck right to

him Rob was amazed. At the school's ski night out, the boy on the

expert downhill racing team made a point of taking a beginner run with

Gavin. Gavin said recently that he thinks the boys respect him because

they know how hard he is trying. I really think the orientations helped

them understand better.

I hope things go better...

Best Wishes

Sally (Ottawa)

[Guest guest]

Hi Sally,

Wonderful input and news! I've been wondering where you've been. Gavin must be

about 10 by now - how time flies!

Gretchen

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[Guest guest]

Excellent, Sally. Thank you for that.

C. 68, ON, Canada CMT2A.

[Guest guest]

Wonderful, Sally!  Thank you.

in So Calif

(40's, CMT1a)

[Guest guest]

Hi Gretchen...

Yes he's 10 and doing very well...has started acting which he loves.

He's now up to my shoulder. Has been sporting a braid and bead in his bangs...

definitely a preteen with his own ideas.

I've been reading posts but in the background...It has taken us several

years to find a new normal, but I think we're getting there.

Thanks and for your kind comments...

Cheers

Sally

[Guest guest]

That is the key right there.. " The new normal " .

It took us a while but we got there too. At least I hope we are there.

In a message dated 2/7/2011 9:32:53 A.M. Pacific Standard Time,

Sally.Pehrsson@... writes:

I've been reading posts but in the background...It has taken us several

years to find a new normal, but I think we're getting there.