Hi, Parents!
Thank you for stopping by the section I put together for you. I want to let you know that doctors are now saying that the earlier you treat your child's port wine stain the better. Early treatment is easier, more effective, and prevents the PWS from developing into something much more difficult to treat. The picture above is how light my birthmark was as a baby. At that time the laser treatment that is available now didn't exist. Though I am around 8-10 years old in this picture, with the current technology, doctors are treating babies as early as 6 weeks of age. In addition, port wine stains are responding quite favorably with just a few treatments.
It is especially important that you get your child treated early to keep the PWS from developing. In my school section I have a picture of how much my PWS had darkened by the time I was in High School. And if you refer to the picture that was taken before I started this recent series of surgeries you can see that the PWS not only darkened and thickened, but formed cobblestones.
Early treatment may help to avoid psychological damage your child may have to deal with as a result of not fitting in at school. That was a source of frustration for me, and I'm sure I am not alone in that.
As many of you know kids sometimes tend to treat each other poorly. When I was still in elementary school I had to put up with that fact. In Kindergarten through third grade, I was made fun of by being called "purple face" a bunch. Honestly, I have to say I hated that. It was certainly hurtful. Over time, I slowly had to realize that most other kids just don't understand. In addition, I was so hurt by the name-calling that it didn't occur to me to explain the little I understood about my birthmark back then. Since I didn't want to be called names I internalized my frustrations and didn't talk to people much at all. Talking about it might have caused more name-calling. Looking back at it, though, I think the better approach is to have your child tell the child that is making fun that it is hurtful and could they please stop with the name-calling. In some cases the child may persist and the child being made fun of would be best suited to ignore them.
In fourth grade, I went to Cornerstone Christian School which was the school started by my home church. I was in Cornerstone Christian school from fourth through eighth grade. During those years I didn't have to put up with any sort of name-calling because the school was Christian, but I still dealt with it in society at large. I am not sure I would want to know what I would have had to deal with if I were in a public school during those years. After 8th grade though, I didn't ever have to worry about that most of the time because I was home schooled. There were a couple of classes in high school though that I went to the Clark County Vocational Skills Center to take. That was the only time in high school I once again had to put up with the insensitive comments that people tend to make, but by this time the comments weren't about my birthmark anymore, however let me show you what I looked like at that point in time anyway.
After my experiences over the years one conclusion I have come to is that if I sense someone is wondering about my birthmark, but is too shy to ask me I ask them if that is what they are wondering about, and if so I proceed to explain. I find that once kids understand what is going on they aren't afraid of it anymore and a lot of times will walk off which is fine. In some cases the original curiosity is because people think my birthmark is a bad burn and wonder if it hurts. It doesn't hurt. I have also dealt with people I see who enjoy saying unkind things I just assume they have a problem that they need to work on and haven't done so yet.
I don't tell you all this to ask you to feel sorry for me because I dealt with the name-calling in elementary school and the patronizing in high school. The past is past and I tend to focus my energies more on the present. So you ask why am I telling you all this? Let me answer that. The reason is to explain my experiences to you so that if have a child with a port wine stain you can know what to expect. It certainly is not easy.
Remind your child that if he/she is made fun of that it is probably because the child making fun has not been taught how to treat others with kindness. In addition it is important that the child with the bad behavior know that kind of behavior is wrong and unacceptable, so you should certainly bring it to the attention of the school authorities, the other child's parents, or both. Any child who continually pesters a child with a physical deformity is obviously in need of discipline or guidance. If you have a child with a PWS who experiences pestering from a particular child in the class I would suggest that you find out who that child's parents are and let them know that. Maybe that way the parent can help their child to see that their behavior is unacceptable. In addition if you point something like that out to a parent and they do take action they may prevent them from growing up without proper relational skills. Proper relational skills are especially important once that person lands in school and especially as they land a job somewhere or gets involved in a relationship. I go more into what happens in the work place in my relating section