ugly... - Page 2

Wooders80 · #11 10-11-2010, 01:37 PM

Dominic has a birthmark in his beard area, it has involuted a lot now, and we still get the odd "big head" comment, but much less than in the past. I found pointing out something unique and different about the child who made the comment helped too. There is loads of good advice on this website too:

http://www.changingfaces.org.uk/Your...es-for-parents

I've found generally most adults and children are really accepting, and what has amazed me more is the number of chlildren who don't notice differences. I think children who make comments are very much the exception.

Kamilah's Mommy · #12 10-11-2010, 02:16 PM

I also worry about this same problem. I have heard comments, seen people stare and luckily I don't mind staring back and making comments about them not minding their own business. I can be rude to "curious" people but defending my little girl is my number one priority, and I don't care who it is. Maybe I'm not handling the situation correctly but so far thats been my first reaction.

Lifeisgood · #13 10-11-2010, 02:44 PM

My daughter has a craniofacial syndrome - Goldenhar - and we've gotten a lot of the same kind of comments. I have found that I'm usually not prepared for them at the time, and the situation isn't always conducive for a lengthy, educational conversation. So, I made these postcards. I picked my fav pic of Harlie smiling, and on the same side it says this:

My name is Harlie and I am 3 years old. Even though I cannot speak, I can hear and communicate with sign and a device that talks for me. I am a fast learner and am super smart, it’s just harder to tell since I cannot talk. Me and my family have been through a lot of difficult and painful times together. I am so unique - you will never meet another person like me. But most importantly...
I am a very loved and happy little girl.

Then on the other side it explains what Goldenhar Syndrome and VACTERL Association are. And I ended it with this...

I know she might look different, but she is a normal little girl, with normal intelligence. She can play and do so many things we never thought we would get to see and experience with her. And while she might not understand what other children say about her appearance now, she will soon. And then not only will we be hurt, but so will she.

Please take this opportunity to talk with your child(ren) about differences and try to look past them at the amazing person behind the face. With your help, our children can live in a world where all people are accepted for who they are, not how they look.

Of course, I haven't had them printed yet. But I am doing that this week. And we'll see how it goes when I hand them out. I just thought that doing this - giving them more detailed information and explaining how much she's been through - would make them speak more seriously with their kids.

So, when a kid says something, I can hand the parent this card and say something like "hopefully this will help you answer his/her questions."

Hang in there. I know how it feels, too. And no matter what we tell ourselves - it always hurts.

Hugs,
Christy

twintotwin · #14 10-11-2010, 04:55 PM

Christy- This is such a fabulous idea!!! Just wonderful! I can't wait to get feedback when you pass them out. Such a smart idea!!! You're so awesome.

Ainsley's Mom · #15 10-11-2010, 06:32 PM

Quote:

Originally Posted by Lifeisgood

My daughter has a craniofacial syndrome - Goldenhar - and we've gotten a lot of the same kind of comments. I have found that I'm usually not prepared for them at the time, and the situation isn't always conducive for a lengthy, educational conversation. So, I made these postcards. I picked my fav pic of Harlie smiling, and on the same side it says this:

My name is Harlie and I am 3 years old. Even though I cannot speak, I can hear and communicate with sign and a device that talks for me. I am a fast learner and am super smart, it’s just harder to tell since I cannot talk. Me and my family have been through a lot of difficult and painful times together. I am so unique - you will never meet another person like me. But most importantly...
I am a very loved and happy little girl.

Then on the other side it explains what Goldenhar Syndrome and VACTERL Association are. And I ended it with this...

I know she might look different, but she is a normal little girl, with normal intelligence. She can play and do so many things we never thought we would get to see and experience with her. And while she might not understand what other children say about her appearance now, she will soon. And then not only will we be hurt, but so will she.

Please take this opportunity to talk with your child(ren) about differences and try to look past them at the amazing person behind the face. With your help, our children can live in a world where all people are accepted for who they are, not how they look.

Of course, I haven't had them printed yet. But I am doing that this week. And we'll see how it goes when I hand them out. I just thought that doing this - giving them more detailed information and explaining how much she's been through - would make them speak more seriously with their kids.

So, when a kid says something, I can hand the parent this card and say something like "hopefully this will help you answer his/her questions."

Hang in there. I know how it feels, too. And no matter what we tell ourselves - it always hurts.

Hugs,
Christy

I have a card that I used to give out with Ainsley's blog but then when it was someone I didn't want to be looking in on our lives I didn't want to give it to them. So I like your idea, a bigger card with more information and a message. Though Ainsley doesn't have an easy to define syndrome I might try to come up with some variation that works for us because I like the idea of being able to educate people without having to spend so much of my time doing so. I think people who don't have these concerns underestimate how frequently it comes up. If I do it I'd better get them printed in bulk.

But seriously it can be hard to just enjoy yourself being out in public when you have to constantly be explaining/educating or just feeling all eyes on you no matter how much you ignore. Let us know how it goes when you start using them.

tbhartman · #16 10-12-2010, 03:44 PM

This rings totally true to me, I'm glad someone mentioned this. Micah has some obvious facial deformities that bring a lot of stares. He's only one, so he can't be hurt by it yet... The kids don't bother me, although I really think it's the parents job to intervene when they are just STARING endlessly. It's a little annoying. I try to answer any questions from the kids (although i'm not sure how to explain a cervical/facial lymphatic malformation to anyone!). It's the adults that rub me the wrong way. One woman came up to me (a walmart employee) and said, "Oh dear, they have a lot of work to do on you". UGH!!! Adults should know to mind their own business and control their behavior. It's one thing to take a double take, another to stare, another to gasp, and another to say something dumb like that. I'm going to hurt someone sometime. I try to be gracious and say, oh, he's okay, it doesn't really bother him (it doesn't!). I just can't take it some days.

I have no advice, I just want you to know your not alone.

Barbara · #17 10-12-2010, 08:32 PM

[quote=twintotwin;228562]I get really upset too but I do realize people aren't exposed to kids like ours often enough.

That makes sense too, I try to have some sort of "patience" for the very young ones but they need to be educated (by their parents preferrably). I remember teaching Ashley very very young not to stare. Now she is super tolerant of course, because of Sydney and she has met more disabled children than I can count! Most of her friends have been good through the years. I remember one snotty girl came over and looked at Sydney and said to me "you know some people would make fun of her" and I said "yeah, that's true, but we wouldn't have someone like that in our house" LOL! She shut up after that. Years ago I actually thought of making business cards to hand out (this came from an experience I had at the fair when Sydney was only a baby, I think she had an ng tube in at the time)...one set of cards explaining nicely about her "condition" for those who seem sincerely interested and another set for the very rude looky loos...