One-arm day in Mrs. Sullivan’s class
Riley: Usually I tell the class about it at the beginning of the year so they can all know about it and they’re not wondering, “Hey, why is she using one arm?” or, “Hey, why is she using that machine?” Which would be the insulin pump. That’s what I usually do at the beginning of the year.
Mom: People can ask questions, too, if they have them. What’s happening after Thanksgiving in your class, do you remember?
Riley: Oh, we’re doing a day where we have to use one arm all day, and it was my friend’s idea.
Mom: One-arm day in Mrs. Sullivan’s class.
Riley, child, and mother, CLOVES syndrome
Provided me with a sense of normalcy
Not being in school for me is a major thing, because school was always something that provided me with a sense of normalcy. Especially having such a rare medical condition, it provided a sense of stability in my life, so going to school was always really important to me. This is my first year without having been in school and I plan to go back in the fall, if all goes well with my next couple of procedures, but not being in school has definitely been one of the most challenging things for me. I also had to quit my job because the pain just took over, so that’s definitely very hard for me, to not really be in any sort of routine. That’s the challenge right now, not being in school, not being around kids my own age. I’ve always been very school oriented, so when all your friends are in school and you’re kind of stuck at home, elevating your leg, you know it gets very repetitive, it seems very tedious, it all grows old very fast, so you have to constantly find new ways to keep yourself entertained.
Erica, young adult, Klippel-Trenaunay syndrome
Transitioning to college
I would say after I got to college, I went through the same sort of process where things filtered out gradually. People that I knew on a superficial basis knew I had a condition, but that was about it. My freshman year I became good friends with a few of the people on my floor, and so they knew more on, I guess, a more intimate level that like oh I was in the hospital the other day, this is what happened, I have an infection, I have a surgery coming up, that sort of stuff. There was certainly a transition process both because of this condition, and my graduating class in high school had 23 people, and I went to a school where there’s like 13,000 people if you include undergraduates and graduates, so honestly my freshman year was quite a bit of an adjustment, from both academically and socially and meeting new friends, and how does that fit in.
Sarah, young adult, Klippel-Trenaunay syndrome
I have these conversations every semester with my teachers
I have these conversations every semester with my teachers and again, you get a range of again interested people are. Some people prefer not to have all that much information, and we have a pretty decent disabilities organization that can send out a very vague letter that just says like “I have a medical condition, I might miss class from time to time,” and really that’s supposed to stand as is; I don’t have to give them more information. I generally like to, because usually by being more specific about what’s going on, you can get better accommodations, they know what to expect, that sort of thing. I always like people to know “don’t freak out if I were to start bleeding in class.” For those sorts of things, I don’t like to have people be unnerved, so I always just start off with like, this is the condition, and the major facts of it. My primary care for this condition occurs in Boston, simple things can be done here, but anytime I’m really sick, I have problems, I have to go there. I can get infections, I can have bleeding, I have daily issues with pain and swelling. And that’s kind of how I explain it.
Sarah, young adult, Klippel-Trenaunay syndrome
Tips for college
You have to be very proactive about talking to your professors, outlining everything up front. You have to do a lot of management about if you miss a test, how’s it going to be made up, all that sort of stuff. I personally find it better to live off campus than in a dorm, just for the type of health issues that I have, I have a little bit more control over my environment… I’ve moved off campus and that’s been a lot like more stable for me. I can have all my medical supplies, if I need a visiting nurse, you’re not trying to let people in and out of buildings, and work within the university time frame, and who is this person showing up. That’s personally been one of the choices I’ve been happiest with is being really close to school but technically off campus.
Sarah, young adult, Klippel-Trenaunay syndrome
Curiosity was ok, cruelness was not
Mom: Starting when she was in kindergarten, we went to the classroom and explained everything.
Ashley: It’s never been any problems.
Mom: Yeah, we’ve always kind of gone at it as curiosity was okay, cruelness was not. We welcomed people’s questions and I think she’s always thought that it was okay for people to ask questions and to explain. It’s better to explain then to let them think something different, so I think she’s always very fortunate, the school district that we were at, she’s never had any problems.
Ashley, teenager, and mother, Lymphatic malformation
We all deserve to be treated equally
I was fortunate enough to attend a small elementary school and have a very creative private nurse with me. Patty came up with this great presentation for my kindergarten class. She started talking about how we all are different in our own ways. Then she pulled out a big bag of M&M’s and gave the kids with blue eyes ten M&M’s, kids with brown eyes with seven M&M’s and kids with hazel eyes four M&M’s. When you are six years old every little piece of candy counts!! The whole class started freaking out and complaining that the other kids got more than they did. Patty then finished her talk about how everyone is different, but we all deserve to be treated equally no matter what color our eyes are, our skin is or how we talk or walk. This helped make my kindergarten class understands that just because I look a lot different than them doesn’t mean that I don’t deserve to be treated like everyone else. We continued to do this presentation to other classes to help make my experience as a student more pleasant. In second grade, Patty came up with the idea of having “disability day”. She taped the entire classes’ thumb to their index and middle finger on one hand and we had to keep them taped up all day. It gave us a real insight if what it was like to have a physical disability. Outside of school, my mother had always taught me to just smile and say hello to kids and adults who were staring at me. That is something I still do to this day, especially with children.
Emily, adult, Lymphatic malformation