Is there any advice you give to families about the visual or social aspect of it?
As a rule, my philosophy is very much that I encourage kids to live as broadly as they can and to be as involved as they can, so I really do try to allow physical activity and jumping into as much as they can as quickly as possible. There are some kids, especially my patients with facial lesions, where I strongly recommend against things like contact sports or soccer where there’s a high probability of a direct blow to the face by the soccer ball, but then I strongly encourage them to do other things and I really try hard to have them integrated. It’s harder to give advice about social things. Every kid has to find their own circle of friends who are more sensitive and accepting, but I think it’s critical that families deal with that and not hide from it or not really confront it head-on, and whether that means working with a therapist or with the school or whatever it is, I think that’s a critical piece that the families have to address. That’s usually not much of what I do, but I want to make sure that that’s in place also as part of the overall care.
Darren Orbach, MD, PhD
We do have some books to read to younger kids. Answer the questions honestly and not be embarrassed and then the child can emulate… We talk about treating their children as normal. They always want to pretend that the birthmark’s not there, but it really helps the kids develop some confidence in themselves. If the parents are confident about it then I think the kid also becomes comfortable about their own birthmark too.
Marilyn G. Liang, MD
Some parents choose to say, “Oh, my child is very special!”… You have to be very careful with that because special can mean different things to different people, and for the child to think that they’re very special can be a burden. Often what you want to do is, rather than talk about the child being special because of the deformity, you want to encourage the child to develop their strengths. Don’t focus on the deformity, but get them to focus on building strengths such as music or math. Get the child to be good at something that they can say they are really good at. Diminish any focus on the deformity… the child is not the deformity… the child is who they are for their intellectual function, for their personality, et cetera. When there can be a focus on some strength children really cope quite well, the deformity is just there, it’s not them. If you say they’re special because they have this deformity, then they equate themselves with the deformity. The irony is that when they have surgery and no longer have a deformity, it’s a big shock to their personality. For some, their identity has been so wrapped up with the deformity that when they no longer have it they ask themselves who they are. This is a particular issue with adolescents; on top of any adolescent identity crisis, they have this other identity crisis—and they may act out doing a variety of things to see if they are the same person even though they no longer have the deformity.
Myron L. Belfer, MD
How do you counsel parents to deal with people’s reactions in public?
Have your short answer and have your long answer. As parents I do think you get to have the “bug off” answer where you don’t even engage, because there are people that say amazing things where I cannot believe that would come out of somebody’s mouth to another human being. Even if you’ve heard lots of comments like that, there will always be one that catches you really off-guard. I think that the best kind of advice and the best reaction is to have a response. If you have done some roleplaying or if you have a toolbox of what you say, it can help you move a little bit more instead of becoming stuck in the “oh, my this person just said that to me.” It becomes more of a coded response of this is what I say in this situation.
[Later]
I think that once you think you’ve heard everything, you haven’t, and so having a way to react is the most empowering. For many, that feeling of “What do I say? What do I do?” is also a really hard spot in some ways. Parents afterwards will say, “Well, I didn’t know what to say,” or, “I didn’t know what to do.” If parents have a familiar phrase or answer, at least they can get out of that situation that is so difficult.
Brooke Corder, MSW, LCSW
Try to help the parent and child to develop a standard script for dealing with comments by others rather than doing it ad hoc. Some comments should just be ignored, they don’t require a response. Somebody makes a comment and says, “Your child is really ugly.” You have a choice of saying, “No, I don’t think my child is ugly,” ignoring them, or saying, “Well, my child was born with a problem but they’re going to be better.” There is no one way to respond, and some families are more comfortable not responding. In any event it is best to not respond in the presence of the child if you can, because the child picks up on all that is said.
It’s a given psychologically that when you think the child’s not aware of what you’re saying that they certainly are, and we know from good evidence that children by the age of three identify whether they’re similar or different than other children. They know whether they’re similar or different, and so comments that are directed about them only serve to magnify that sense in themselves that they’re somehow different, maybe defective. Their cognitive function, their abstract function is not great enough to really process all of what they may hear, so it’s better to not expose them to comments they may not understand. On the other hand, the children shouldn’t really be isolated because one of the most important things that a child needs developmentally is to be socialized, so to keep them out of preschool or to think that you’re going to keep the child from experiencing bad things with peers will backfire. The child will end up having far more difficulty adapting, and kids say nasty things to each other no matter what the problem is. A perfectly normal kid may be subject to taunts at one time or another. “Oh, you’re ugly!” you know, et cetera.
Myron L. Belfer, MD
How should parents help their kids develop self-esteem?
Helping children develop self-esteem is a challenge for anyone, and I think it’s that much more difficult for children that have any external difference like some vascular anomalies. It’s important for all children to know they’re capable, and able from an early age. There are vascular anomalies patients who have an early amputation that are playing T-ball, that are doing karate, that are doing everything because their parents said, “You’re a boy, that’s what the boys in our family do, you’re going to do it, and we’ll make whatever modifications so that you can do it.” I think it’s important to not alter life too much in a way that focuses on the child be “different” or “sick.” Try to still put challenges and set a bar that’s appropriately high for children to reach. I think that that can build their self-esteem and their confidence when they can do things.
Instilling those beliefs from a young age can provide a needed boost on those really hard days where someone’s mean to the child. The child can then think “that person may not have been nice, but I’m really good at this, I’m really good at that, I have a great family, I have a good best friend.”
Brooke Corder, MSW, LCSW