They don’t know any better because they don’t understand
I think the schools here, the class, the teachers have been really supportive. In fact last year (and I think she’s going to do it again this year) she’s actually presented about KT in her class, and she talks about her doctor and she brings some pictures. That’s helped too, that we’ve been able to get her some support outside of our family… I think doing that speech to her class helps her, you know that they understand. We’ve tried to teach her so that she’s knowledgeable about it and she is very compassionate in that she will come home and say, “Well they just don’t understand. They don’t know any better because they don’t understand.” I think she’s getting better at also explaining it to others, and when it’s appropriate and when it’s useful. Generally she’s pretty quiet, but like I said I think she feels much more comfortable after she’s talked to her class, that her whole class kind of has an idea of what she goes through.
Father of Natalie, child, Klippel-Trenaunay syndrome
Working with the school
We stay in pretty close contact with the teacher, number one, and we also meet with them the beginning of the school year and end of the school year. We’ve also dropped in and talked with the nurse or the teacher from time to time and check out what the recesses were like, and we talk to her about how things are going. That’s a big thing. They’ve been very helpful. There have also been times where we feel something should have been being done and we have to go in and advocate for it… Generally they’ve been pretty good, they’ve been pretty receptive. And again, other than giving Natalie some extra time to go from place to place, and setting up a place where she can keep those medical supplies and visit the nurse on a regular basis, you know, that’s been a huge thing.
Father of Natalie, child, Klippel-Trenaunay syndrome
Extremely challenging to keep her caught up
Caitlin: I had to miss a lot of school.
Mom: She started pre-K, and every year she misses at least 30 days of school, and then when she was 7 she missed all that time when she was in the hospital. This has been a good year for her… I really work with the teachers, and she has a 504 plan at school; they can’t penalize her for being absent. If she has to go in the hospital, they send out the teacher if she misses like, 5 consecutive days, but it is extremely challenging to keep her caught up and to keep her along with everybody else and not getting behind. She does really well, considering, but we do work hard. She has to work extra hard, really. For example, we knew we were going to be out this week, she went ahead and took all of her tests and tried to get everything done before, and stuff like that, but I know if we don’t do these things then she’s going to end up being out for lots of time, if we don’t manage to stay on top of it. We’ve learned that in the past.
[Later] [The school] has a complete history of what she has. She uses her wheelchair; they make accommodations for that, they let her leave class like 5 minutes early so she gets to the next class on time. There’s a teacher that, if she gets behind, she’ll work with her to catch her up. If she has any pain, she can call me. I have a very good relationship with the school and the clinic, and they know Caitlin real well, and I’m emailing them constantly. It’s a good communication.
Caitlin, pre-teen, and mother, Klippel-Trenaunay syndrome
He’s gone to school a handful of times
Mom: He’s enrolled in public school, but this is only his second year of school, and he repeated this year because of last year.
Dad: He’s only done one semester until this whole year.
Mom: Before he left, they didn’t know how long we’d be away, so they went ahead and finished kindergarten, finished his schoolwork before we left. So he’s officially a first grader.
Dad: He’s gone to school a handful of times.
Mom: Yeah, he went some. He does go to the classroom, you know, when he feels like it.
Dad: When he can.
Parents of Michael, child, Blue rubber bleb nevus syndrome
He really tries hard to participate as much as he can
Sometimes I think, like in gym class, he might not be able to fully participate with the other kids, but he really tries hard to participate as much as he can. We have to talk to the physical education instructors so they’re aware of his condition and they can modify things so that he is able to participate. Because the area is so sensitive to the touch, we speak to his gym teacher about if they were to play soccer or something, that that may not be the best thing for him to participate or he should hang back and not get directly in the pack of the kids kicking the ball and stuff because we don’t want his leg to get injured or hit by the ball because that would be very painful for him.
Mother of Liam, child, Glomuvenous malformation
We’ve really been proactive with the teachers
Going back to stresses, I think we’ve also learned, now that she’s in high school, we’ve really been proactive with the teachers and everything, getting her work ahead of time because once she’s here for a procedure and she’s not feeling well for a week after, that’s not the time to be making up work. I think that that has helped her, because she gets very stressed out about missing schoolwork. These kids have so many other stresses, and then to have something like this to deal with on top of it, especially being a teen, I think we’ve really been proactive and push with the teachers just to give her more peace of mind.
Mother of Ashley, teenager, Lymphatic malformation