Saturday, June 6, 2009

A leopard can't change its spots

It's amazing what children tell you when you are driving in the car. This is where my daughter always tells me things she would not normally bring up or discuss. We got talking about her "spots", the gazillion freckles under her left armpit from her Segmental Neurofibromatosis. In the course of our conversation she told me that kids are making fun of them. She said that she doesn't like raising her hand in class because then the kids see them and make comments. I tried to say all the right things about everyone has something that makes them different and that most kids tease other kids because they don't feel good about themselves, etc. But I just kept thinking that she is being really hurt by this and it will probably get worse (the spots keep multiplying and she is missing more pigment on her shoulder and neck every year) because kids are like this up through high school.

She is such a great kid. She is energetic, creative, funny and independent. I really hope she learns to accept this part of herself and not let it damage her self-esteem. I also hope she learns to focus on the friends and family that love her just the way she is. I was teased and rejected as a child for various reasons and it wasn't until I reached my 20's that I finally really liked and accepted myself.

Have any of you had to deal with your child being teased or made fun of and how have you tried to help your child deal with it?


Tripletmom said...

Oh, I'm sorry she is being teased. Kids can be so very mean.

I was thinking... some of them might be afraid of the loss of pigmentation, too, afraid that they might 'catch' it somehow.

If she were not getting more spots and the loss of pigmentation was not getting bigger, I would say tell them they are birthmarks... but that won't work in this situation if they are changing. I remember a child when I was in middle school having a non-pigmentation patch and that is what she said.

I wish I had some good answers for you, but the only thing I can think of is a letter send home to the parents in her class about Segmental Neurofibromatosis, so the parents can explain to the kids that she has this condition, it is NOT contagious and that is why her skin looks different.

That is what I did with DD1's sun allergies, though they would only send it home to her class and I really wanted it sent to the whole school or in the newsletter or something because it is not only the kids in her class that are teasing her - even some of the parents outside the school have remarks because of what she has to wear.

Sometimes I'm not sure whether an obvious condition or an 'invisible' condition is better!

Hey, I have been meaning to ask... can the coffee-colored spots fade? Remember a while back I said I had larger one and a few smaller ones that looked like the pictures of SN that appeared out of nowhere on my abdomen? Well, I'm getting lots of them now all over my trunk and some on my arms, but the biggest one I referred to above is fading away! Instead of being the size of 2 quarters next to each other it is now more like a quarter-sized crescent moon. Very strange. It cannot be a 'liver spot' because those don't fade either.

Queenbuv3 said...

The letter is a great idea. I will have to prepare one over the summer.

As far as I know cafe au lait spots are permanent.