My daughters starting high school in a week and we're not really sure what she should tell her new classmates. She'll be the only one in classes with a laptop, because she can't write, will get special conditions with her 504, and I'm sure the kids will be asking why or what's wrong. RSD/RND's a tough condition to explain to adults, how can you explain it to all those teenagers who'll ask and her new friends? Really don't want her to just be called the girl with the pain.

Anyone have any experience or suggestions on what to call it or an easy way to describe it to the other teenagers?

go to AmericanRSDHope and print out the symptoms sheet also print out the McGill Pain Index which shows this is the most painful condition in the world.

Many kids have access to smart phones or computers, if she has a favorite info site that explains RSD/CRPS, she could just tell then a basic explanation and mention the site to them , if they are interested they can look it up.

I think for the most part kids seem to be more accepting of any kind of disability and adaptations, so hopefully it won't be a big deal.
If they ask, then a short explanation about RSD & why the adaptive equipment, or maybe the teachers will explain to the class if the topic comes up.

I would remind her to not mention any medications if she takes any, just so none pressure her to share or even worse steal them from her.

Hopefully the admins send a heads up to all teachers, or you can meet with them so they are aware, just in case they need to give a basic limited explanation to others.

If it hurts her to be touched or bumped in the affected area, that might be good to let them know also.


Oh I just read that hers if full body, if it ends up being too much bumping /crowding in the hallways or just too painful, another option is online schooling. We are even getting commercials on tv now about more online schools in our area.
Many are included in the state school system so no extra costs.

I would be careful. I don't think I would voluntarily tell other classmates about my RSD or why accommodations, etc. especially right away. She shouldn't feel obligated to share. She doesn't owe anyone an explanation to anyone and kids are so nasty these days. I would be afraid that if she shared that it hurts to be bumped etc. people might try to do it to her on purpose or make up untrue stories. I am a teacher and have seen things like this happen unfortunately. Things might work out better for her if only her teachers and administrators know and maybe a few close friends she can trust. She should just act natural. I think if she is in class, and leaves classes early to make easy transitions, there will be very little time for her to be questioned except in maybe the cafeteria or group work but hopefully, she would be with some friends. I know it is kind of a sticky situation so I would just advise you that if she is planning to tell all of her classmates, her words need to be chosen very very carefully. The teachers may get more questions about your daughter than she actually would. "How come Suzie gets gets to leave class early?" and then the teacher will deal with it hopefully in a positive non-revealing way. The school counselor might have some other ideas that may help answer your question if you explain to her dilemma. Good luck. Hopefully this helps.

and if she doesn't tell she could have it made a lot worse, my first spread was from a sensitivity pin used 4ins outside what we thought was the affected area making it go from hand upto elbow, The second by my grandson who when he started to walk kept treading on my toes. Now in both legs and spreading upwards.
Even the slightest trauma can do this so it's vital all around her know.

Calling additional attention to her illness by trying to educate her classmates could really backfire like Musicgirl suggested. I've found a very short explaination is generally best. Something like "I have a rare nerve disorder called RSD."

If she is effected by vibrations and noise, it's really going to be tough on her. I've learned over the years it's impossible to control any public environment, and probably unfair to ask other's "normal" behavior that causes me pain. So, I'm careful to minimize contact to others, and avoid lots of situations...

For example, someone kicking the back of her desk, might send her into a major flare... She may need to have a desk in a corner away from the other students. Kids bump into other desks, and to try and "train" others, is probably impossible even if they care enough to make an effort. Another accommodation, might be for her to be allowed an iPod in class with classical music to shut out some of the stimuli--this is something I do when I travel.

Is this a large school or a small one, btw? That will really make a difference.

In the end what we all have to do now is balance the risk with the reward. Which is riskier not telling in which case she will be treated as any normal person and subject to normal kids horseplay or telling where some will go out of their way to help and possibly protect her but some bullys might pick on her because she's different

When my daughter returned to school after treatment, she decided ahead of time what she would say and to who. She had gone from months of being on crutches, to walking with a prominent limp. She also had some accomodations, so obviously there would be questions.

She had general categories of people (close friends, friendly acquaintances, trusted adults, people she didn't really know, people she didn't really like, etc) and had different explanations for each. I wish I could remember what they were, but I'm not sure that it really matters, because I specifically remember that the wording she chose was different that what I thought sounded best. That really made an impression on me, because I realized that they had to be explanations that SHE felt comfortable with, so that she could say them confidently with an "end of discussion" sort of feel.

I wouldn't assume that kids will not be kind to her. Both my daughter and one of my best friends daughter both have RSD (and no, we did not become friends after RSD - it was just a bizarre coincidence that both our kids ended up with it) and they had completely different reactions from classmates (same school, different grades). My friend's daughter was treated very poorly and my daughter's classmates were supportive or relatively indifferent. I think a lot depends on the unique interaction between your child's particular personality and those of the kids she is lucky/unlucky enough to have in her classes.

What I do remember about what my daughter chose to say is:
-the only people she shared much detail with were her few closest friends
-all other explanations were short and sweet
-I think she said something to the effect of a "neurological disorder" b/c she thought it sounded both serious enough to validate the need for accomodations but complicated/confusing enough to discourage more detailed questions.

Oh yes - finally - my daughter is going to our local school this year, but they have a new program that allows her to take some courses online. She'll take 2 classes online, but complete the work in the school building. The idea is that it will allow her to have some breaks from the classroom/halls, which can be difficult but also makes her seem more like a "normal kid" b/c she is still at school all day. I don't know if your district has anything similar but you might want to ask. Our district has the program, but doesn't publicize it, so you either have to ask for it or be lucky enough to have someone in the district notice your child is struggling and offer it.

I'm praying for both of our kids for a good school year.

Lori