My mildly handicapped child

iVillage Member
Registered: 06-12-2003
My mildly handicapped child
6
Thu, 06-12-2003 - 11:27pm
My name is mindy and my son has a type of muscular dystrophy called mitochondrial myopathy. He is five years old and due to start kindergarden in 2 months. I also have this disease, but being female, I do not feel that it has affected me as much as it will affect him. He is pretty "normal". His disabilities include not being able to run, climb stairs, or get up from the floor. He has weak muscles throughout his entire body. I would like to hear from other parents with handicapped sons and find out how others deal with the teasing, etc. Thanks, and any responses would be greatly appreciated.
iVillage Member
Registered: 05-27-2003
Wed, 06-18-2003 - 3:02pm
Hi Mindy,

You might also try posting at the Hypotonia (low muscle tone) board - there are a lot of conversations there about PT/OT, and motor delays.

-Hilary

Avatar for valentinebaby
iVillage Member
Registered: 03-28-2003
Thu, 06-19-2003 - 9:41am
Hi Mindy, I welome you to join us on Child Neurology site, you will find many of us dealing with similar, very similar issues. It is a very active board.

Braintalk.org , Look under specific conditions and pick Child Neurology 2, there you will find a very friendly group.

iVillage Member
Registered: 03-27-2003
Thu, 06-19-2003 - 11:28pm
Hi Mindy, I was also going to invite you over to the Hypotonia board -good job Hillary! lol

My daughter is 3 and has mild gross motor delays. She also wears glasses for strabismus. I always fear the day that she will get teased. So far she handles herself because she's a friendly little, spunky thing. If another kids stares at her she usually says something like this (her 3 year old words) "It's ok to say Hi. You don't have to be shy." She once said hi to a teenager who turned his head and she said rather loudly, What's the matter with him? Is he jealous or something? (she didn't know what the word meant but it was sort of funny)

I'm also a kindergarten teacher and I have a 0 tolerance for teasing in my classroom. I had a little boy this year who also had strabismus and one day he took his glasses off to rub his eyes. Another little girl made a comment about how "gross" it was that his eye turned in and I put an end to that right then and there. It was a real sore spot for me because of my DD. So, I guess my point is the teacher should be able to talk to the kids and make sure the kids are aware of differences so that no teasing is tolerated.

I wish you and your son the best.

Karen & Jordyn -3 -hypotonia, strabismus, and a real cutiepatootie!

iVillage Member
Registered: 07-26-2003
Sun, 07-27-2003 - 5:34pm
Hi,

I'm trying to find the Hypotonia board, can you direct me? I've done searches within the site but have only come up with this thread. I have a son, 16 months, with Hypotonia and am desperate for a community to relate to about it.

Thanks!

iVillage Member
Registered: 09-28-2003
Sun, 09-28-2003 - 10:56pm
my son was diagnosed w hypotonia at around age two.he was also referred to a neurologist where hypotonia was ruled out and was then diagnosed with a rare nervous disease which as referred to as demilination of the nerves of the brain.this disease as i understand it eats the coating of the nerves and exposes them causing mild to moderate delays in the childs developement. my son now is 62% delayed in allhis activities including physical and speech. he is although a very smart boy and is able to understand alot of complicated issues and topics the childeren his age cannot yet begin to understand yet the simple everyday tasks we never have to think about he struggles with the most.eddie is now six and cannot run jump walk up stairs w out help or even push slightly heavy objects, he is unable to count to 3 but could name the make and model of every car that passes by and could tell you which direction you are going in no matter how many twists and turns you make while driving or walking... he is very lovable and caring with a bit of ornryness. he is unbelievable. i also would like more info on his condition.thank you
iVillage Member
Registered: 03-19-2003
Wed, 02-04-2004 - 9:18am
How are things going?