Re: Request for help with hand affected 12 year old daughter

[Guest guest]

Hi Tammy,

Have you met with the Head of the School/Parish Administrator/School Principal

and guidance counselors? Something as simple as allowing her a laptop to take

notes, or providing tapes of class teachings may be a easy way to go. You may be

able to work out some sort of 'mock' IEP or other arrangement, although you may

have to pay or donate for it. Perhaps the St. de group would be

willing to help with the cost of a laptop or tapes.

Section 307 of the ADA provides that religious organizations and entities

controlled by religious organizations are not subject to the requirements for

public accommodations or commercial facilities under Title III of the Act.

Religious organizations, such as Synagogues and religious-controlled schools

may, however, accommodate individuals with disabilities at their own discretion,

and do not waive their exemption from the requirements of Title III by doing so.

Gretchen

[Guest guest]

Tammy,

I have a six year old son with CMT 1A and at school since I work there as a

teacher have been very helpful. He is labeled special ed. He has modifications

such as occupational therapy and they gave him a special pencil and a word

processor. That way his writing has been reduced. He also has special scissors.

This is a public school. I don't know how it would work for a private school.

Anita

[Guest guest]

Tammy,

I am an Occupational Therapist with CMT 1A, and my 12 year old son has CMT also.

He has had some hand issues including fatigue, and tremors, though he is doing

okay at this time. As an OT who has worked in the schools, I can help you with

some common accommodations for hand weakness/dysfunction: reduction of written

work, extended time limits for written work, dictating written work to a scribe

for classwork and/or homework, use of a word processor (alphasmart or a Writer,

or a laptop, allowing her to be given notes to highlight during lectures rather

than writing, allowing her to answer in short answer rather than complete

sentences.

My son was having more problems in elementary school with the copious amounts of

rough draft rewriting in class, but now they do much of that at home. He did

okay in class, and he would dictate extensive writing assignments to me while I

typed them for him at home.

It is very frustrating when the administration or teachers don't see a problem.

Things were better when I got information from the doctor, and printed the CMT

brochure from the CMTA website. My son's problems are pretty well hidden at

this point, which has its positives and negatives, I guess.

Mandy

>

> Hello

> I am a CMT 1A affected parent with 5 daughters. Two daughters are CMT affected

also. Unfortunately I was not diagnosed until after the girls were born or

adopted.

> Gradually over the last 6 mos. my 12 year old daughter has developed hand

issues. Weakness, pain, inability to write legibly for more than several

minutes.

> We approached the school and quickly realized that they have never dealt with

this problem before. It is a midsized parochial school.

> The computer teacher is compassionate and helpful.

> We find ourselves in uncharted waters.

> If anyone in the group has experience with these issues please contact me if

possible. At this point the only thing I want for Christmas this year (or any

year ) is support for this sweet little girl.

> Tammy

>