How to help a teacher understand CMT better?

[Guest guest]

As a teacher, I am so sorry to hear of the many painful, hurtful comments

directed toward children with CMT. I can almost guarantee that the teachers had

no idea what CMT is, or how it presents.

I have taught in four different excellent school districts. In all those 23

years, I have never attended any kind of work shop, in-service or training to

learn about medical concerns of our students, with the exception of blood borne

pathogens (required by the state) and diabetes.

Confidentiality rules mean that we receive extremely cryptic messages from

counselors or nurses about children with medical alerts. Sometimes I have

received notices that just had the child's initials to identify them, and I see

over 300 students per day! Very often we receive a 504 plan for action,

requiring us to read questions aloud, or seat a child toward the front, but we

do NOT see a diagnosis, or know what the real issues are. This needs to change.

One of my parents visited each of her daughter's teachers and gave us a

laminated card describing her daughter's diabetes, symptoms to look for, and

what to do in case of an emergency. What a wonderful, helpful and proactive

thing to do for us!

Perhaps someone more knowledgeable about CMT than me could mock up a sample

hand-out for teachers and post it here. Maybe those of us who are teachers could

make the effort to present a short workshop to our faculties.

I am a fairly new member to this group. My boyfriend and his son both have CMT,

and this has been a real learning experience for me. I am constantly humbled to

read how so many on this list remain so positive, supportive and loyal when I

see first hand every single day how difficult this disease can be.

Bless you for hosting this wonderful site!

Martha