My introduction and advice for Kelli's daughter

[Guest guest]

Just wanted to post my introductory note to this list, and at the same

time respond to a request for advice from Kelli, about her daughter

Ashlyn.

I am 58 years old (ouch! Can't believe I'm nearly 60). I teach at a

university in Tennessee, and my area of expertise is school psychology

(will return to that later). I have had CMT since I was about 9 or 10.

I think my type is CMT1A but I have never had the blood test, just

examinations. I have fared pretty well, physically, through the years

but the last 5 or 6 years I've had increasing muscle weakness and

balance problems. I've had surgery, years ago for foot deformities.

That helped for a while. Now I wear AFOs. Just got them a few months

ago. They are good! My balance and gait have improved, and I can wear

a variety of shoes (albeit sneaker types) that were not comfortable or

stable for me before the AFO's. My rate of walking (speed) has

increased slightly, and I have more energy left after a day of

activities.

Back to the school psychology and Kelli's request for advice. If your

daughter, Ashlyn's teacher has not referred her for assessment, and if

you live in the U.S., you might try contacting the special education

director in your school district. You can find that person's name by

calling the administration office. The school principal will also

know her/his name and phone number. Ashlyn could very well have a

learning disability or even a language disability (unrelated to CMT).

Either of these problems are fairly common and are treatable by

professionals in the school system, and the school is responsible for

those services. You might ask her teacher first about whether she or

he might refer Ashlyn for testing. Could be she/he hasn't thought of

this. It's a better route to take than out-and-out retention and

she'll probably feel better about it.

Good luck,

Sherry