What advice do you have for kids starting school?
For kids that are entering into school, kids that are around age 3- 4, parents often ask, “How do I help them enter school? What do I say? What do I not say? What do I tell the teachers, what do I not tell the teachers?” Generally, what I encourage parents to do is what most are doing already, which is talking with their child about the vascular anomaly. In speaking with children, some parents use the full medical name, other people use the word birthmarks, stain, etc. The important thing is to use language that the family uses and to help the child have the language. If another child walks up and says, “Why does your cheek look like that?” or “Why is one of your arms bigger?” I find that most patients are able to answer better if they have language and they’re not caught off-guard. Clearly a 4 year-old’s answers are going to be different than a 10 year-old’s answers and 15 year-old’s answers.
I like the idea of patients and families having “scripts” or answers they practice, so if someone asks a question about the child’s appearance all family members have a practiced answer to provide. I encourage patients and families to have a short answer and a long answer. Sometimes there are days you don’t feel like talking to anybody and the answer to anyone’s question is “nothing”, or “none of your business”, or some other short answer. Then there are longer answers when a patient or family member might want to explain or talk to somebody more about the vascular anomaly. We all have good days and bad days, and so I think you get to have a kind of “bug off” answer and a more conversational answer, even at age three or four.
Brooke Corder, MSW, LCSW
What can parents do to help their kids transition into school?
I often ask the parents about their kids. There are some kids that really like to be at the front of the classroom and like a lot of attention. I think for those kids, it could be helpful (particularly in elementary school) to go in at the very beginning of the school year and see if the teacher would let the parents have a short time to give the class some education. The goal would be to provide a little bit of age appropriate language and medical knowledge, and then showing the kids whatever the vascular anomaly is. That way, it’s not so much of a secret, the kids have seen it, and it may not be as much a topic of conversation. I think there are some kids who are such wallflowers that it would just petrify them to have their mothers or fathers stand up at the front of the classroom, so I usually give a little bit of that caveat. If you have a kid who likes being the center of attention, great, sell it. Use that piece of their personality. If they’re not, it’s probably best to just have a conversation with the teacher about what to do. There are also kids who make books (whether it’s with photographs or drawings or pictures from the internet) so maybe there’s a book that goes in the students’ library, or that someone can read. Generally, I would say have a conversation with the teachers, and then depending on what you think your child would enjoy or wouldn’t be harmful for them, doing an introduction to the classroom.
Brooke Corder, MSW, LCSW
What advice do you have for kids going away to college?
These young adults that are going to school, they’ve been involved in their care but their parents have been very involved in their care. What happens when they turn 18 and consider leaving home to attend college? I think it’s important to provide these young adults with the knowledge and information, and empower them to start taking over their care… For the kids who are going away, sometimes I’ve sat down with kids and made cards that go in their wallet. For example with Klippel-Trenaunay Syndrome, the card might include: these are the antibiotics that work, these are the antibiotics that don’t, these are the doctors that you need to call, here’s the Vascular Anomaly Center in Boston’s phone number. Some of this information might also be helpful for roommates and the student health center to know. Even if you know it, if you’re away from home the first time, and you end up in an ambulance on the way to the emergency room, you might forget everything you ever knew, and so to have a cheat sheet, and be like, “here, you can read that, this is all my information.” Those are kind of some strategies for that.
Brooke Corder, MSW, LCSW