She never used to call it her big leg
She never used to call it her big leg, and she started school and now she refers to it as her big leg, so I’m thinking that probably the other kids have noted that…I don’t think that she’s at an age right now where it’s a problem.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
I honestly think his personality is going to make a big difference
Our neighbors all know that he’s got a boo-boo, and so all those kids are ok with it. Then once he got to school and started at his day care and once they got that out of the way, talking about what was wrong, you know the kids are fine with it now. But I anticipate when he has to start real school, we’ll go through that again. My daughter goes to a small school, it’s only one or two classes per grade, and when you’re in a small setting like that, everybody knows everybody and it’s not as difficult to deal with something. If you’re in a huge school, he would have more of a chance of having somebody tease him or whatever, because they don’t know him.
I honestly think that his personality is going to make a big difference because everybody is just going to love him anyway and they’re not going to care about his leg. It was funny, because I had a friend in high school, he had white spots, big white spots on his legs and his chest, and even one in his hair, but he has this personality, and everybody loves him. He’s the one that everybody wanted to be around because he’s the most fun, and that’s just like Cooper. He’s just the most fun and everybody wants to be around him.
Mother of Cooper, child, Klippel-Trenaunay syndrome
Because she might catch what she had
There was an instance of making fun of her, but she didn’t hear it, actually another mom told me about it. But there haven’t been any problems with bullying, which is great. She transferred over to public school when she was in first grade. [Before that] she was in this little private environmental school and they did a great job. Riley used to do her own, like, dog and pony show about why she had a wheelchair and why she had an arm that didn’t work, and all that stuff. So we started out her school year when she transferred over to public school with her own little presentation about that. She’s very honest, and, for the most part if people have questions, she’ll answer their questions if she’s in a good space emotionally about that. She has an adult around her most of the time who helps to intervene if there is anything that looked like it was going in a bullying way.
I think that the downside of that is that she may not be advocating for herself or experiencing that. Not that I want her to experience bullying, but at some point it’s going to happen, and I think it would probably be good for her to have the skills to be able to work through that with less adult support. The one experience that the other mom told me about was that there was a little girl who told this other mom’s daughter that she didn’t want to play with Riley because she might catch what she had. It’s like, I haven’t heard that since probably the 80’s. [laughs] I just kept that to myself. That’s very sad… this is something we talk to her brother about too—there’s always going to be people who’re rude and who’re jerks, and our job is to figure out how to deal with them and just to move on.
Mother of Riley, child, CLOVES syndrome
“Oh my gosh, what the heck is that?”
We went to a small private Christian school, and because we went to church there before, he really didn’t have any problems at school ever. But, it was the last week of his kindergarten year and we were at a field trip. There were a bunch of different schools there, and there was a kid that was probably 3 or 4 years older than him, a couple of them walked by, and they literally stopped and out loud went, “Oh, my gosh, what the heck is that?” Derek heard it and I heard it, and as soon as I looked, his head dropped and tears started rolling down his face and that about killed me.
I had to keep walking because I guess that was the first time [someone had said something] so I didn’t know how to react… to say something to the kids without coming across mean. And his teacher saw, and his teacher literally started crying. I just picked him up, walked with him and talked with him a little bit about it, and tried to explain once again that, “Hey, those are the sort of kids that didn’t know. Yes, that came across really wrong but it was mainly just because they’ve never seen it. It wasn’t that they were making fun.” I just tried to explain it to him and kind of get him out of the way and get him moving, and it was okay, we got past it, but it was tough.
Mother of Derek, child, Kaposiform hemangioendothelioma
She has a hard time with it
She has a hard time with it. The older she gets, the more she’s realizing that something’s wrong, so now we’re having a hard time with kids because kids are cruel, kids say mean stuff. So now we’re in that age where she hides…The problem is with the other kids, obviously they don’t know what it is, so they question and the way they question it, it’s hard. Kids sit and stare, so instead of waiting until somebody says something I usually approach them and tell them exactly what it is, and after that it’s fine.
The first year of preschool, when she started we had a really hard time because kids didn’t want to be near her. I mean, we had one little kid say she needed to go home because she thought she was going to catch it. Until we clarified it and explained what it was, we bought a book, “Visits to the Hospital”, and explained to the kids that it’s something that she was born with. Now everybody knows Emma and it’s a small school, so she gets along with everyone now. So we’re kind of past that at that school at least.
Mother of Emma, child, Venous malformation
You’re curious about him, that’s how people are curious about you
Mom: He has issues, like he doesn’t like his scars to be seen. And he won’t go swimming or play in the water or anything without a shirt on. For a while he didn’t have any problem with it and then all of a sudden he just stopped. And so I asked him about it and he said, “The kids will tell their parents, and their parents will point at me.” And I said, “Well, has that ever happened before?” and he said no, but I knew he couldn’t make it up on his own, so I know it’s happened at some point. But I tried to explain to him, that it’s not that they’re being ugly.
Dad: Kids are just curious.
Mom: 9 times out of 10 they’re probably just curious. They’re not making fun of him, they’re just curious, why does he have a big scar, what happened to him? And one day we saw a man walking down the street with the crutches that have like an arm band around them and poles, and Michael stared at him. And I said, “You don’t stare at people like that.” And he said, “Well, I was just wondering what happened.” And I said, “See, you’re curious about him, that’s how people are curious about you.” He still won’t go anywhere without a t-shirt on.
Family of Michael, child, Blue rubber bleb nevus syndrome
“Mommy, why would that girl say that?”
Actually just the other day there was this little girl who said to her mom “What happened to her?” I was doing something else, and I didn’t realize anything had happened and Grace goes, “Mommy, why would that girl say that?” and I asked what she said and she goes “She asked what was wrong with me, what happened to me,” and you could tell in her voice that she was very sad about it… Normally she just happily says, “Oh it’s my special mark, I was born with it.”
Normally she’s very proud of it, she’s very proud that she’s different, but I don’t know if it was just the way that the child phrased the question or said it, it really upset her, so I’ve been trying to talk to her about it lately but she actually seems to be a little stand-offish about it. We’ve been trying to tell her that there may be some people that are mean about it, and I tell her to just simply tell them “I don’t like it when you say things like that,” or, “It hurts my feelings when you say that.” And she can always come and talk to us if she has a problem or if she needs help, or if she’s at school and someone’s really being mean to her and they won’t stop, she can tell a teacher. So I don’t think it’s quite sunk in yet, but that’s something we really try to work on with her, to try to help her with the self-esteem and help her with the different ways that people may treat her in the coming years or whatnot.
Mother of Grace, child, Sinus pericranii