Hello! My 14 year old daughter is starting high school soon and we are trying to find a way for her to carry her things. Her crps is in her shoulders arms and back. She has extreme limited range in both her arms and shoulders alon with decreased strength. A backpack or shoulder bag is out because of the sensitivity. She can't pull a rolling case because of the loss of range of motion. She can't straighten her arms enough. She calls herself a little t-Rex (little arms).

Any ideas would be greatly appreciated!
Thanks!

Hi,

I have had RSD for 4 years now-shoulder, arms, hand and back, and I went through college with RSD and was able to get my doctor to write a note for accommodations (extended test time, scribe/note-taker, physical breaks during tests) . I happen to also be a public school teacher also : ). You might want to look into requesting a 504 plan for your daughter. You would need your doctor to write a note and find out what else is required by your school to get one, but generally if the doctor says it, in most cases the school has to provide it. http://specialchildren.about.com/od/504s/f/504faq1.htm (link about what a 504 plan is)

It is possible that the school could have an extra set of textbooks for your daughter that would stay in each classroom and she would just use it when she is there and be able to have a set that would stay at home. There are probably other accommodations she would be eligible for that would make her life easier. Here is a brochure from the RSDSA, I recommend taking a look at and perhaps sharing with your daughter's school. It has suggests some accommodations the school can make specifically to help those with RSD
http://www.rsds.org/4/youth/Succeed_in_School.pdf

Hope this information helps! Feel free to PM me if needed.

I just thought of one more thing that she might be eligible for depending on if she attends a public school and your location but generally most districts have an occupational therapist either on staff or on a consult basis. Because of her condition, she may be eligible for free occupational therapy through the school, could be a part of her 504 plan. She might also be eligible for an IEP, if there is a specific identified learning disability but is definitely eligible for a 504. Good luck! If you are going to do this, I recommend starting this process ASAP so services can start for your daughter at the beginning of the school year and that all of her teachers are made aware. Once she has a 504 plan or IEP, all of her teachers will be required by law to provide all of those accommodations.

The teacher in me keeps thinking of more ideas. LOL.

Maybe she could be dismissed early 5 minutes ahead at the end of each class to transition in the hallway to her next class early so she isn't bumped and a friend or a staff member could carry her things to the next class. Just trying to brainstorm for you.

A messenger bag with very small quanties of items works well for me instead of a purse. This can help to keep your hands free.

Some texts are available via ereader I believe. I love my nook...

Getting permission to leave class 5 minutes early helped me enormously when I was in a leg brace in jr. high. If she's sensitive to vibrations, having her skip assemblies and getting special accommodations for lunch might be important as well.

The important thing is to make sure she doesn't hide the problems she encounters, but has someone at school she trusts will be a good advocate for her.

If she needs a free period to recover somewhere quietly might be something to consider. Or utilizing an online class here or there in certain scenarios.

Thanks to you both they are all great ideas. We do have a 504 with some of the accommodations you mentioned and I really like the idea of getting her Out of assemblies and such because she does have problems with vibrations. While we have a lot of bases covered the carrying thing is still an issue. She can't even hold a folder in her arms let alone folders and notebooks. How is she going to get her lunch whether she brings it or buys it. Unfortunately we have tried the messenger bag but her shoulders and back are much to sensitive. Maybe there is something she can wear around her waist that would hold a couple folders. She may just have to have an aid. As far as occupational therapy, she really doesn't get that. She has physical therapy 3 days a week and has been approved for pt minutes during school. I will have to ask about ot.
Thanks for the input!

My daughter is starting high school in a few weeks as well. We're going to start with the 504 and then apply for the special needs program which is much more powerful and will allow her to miss more days than the 90% required attendance and give her more flexibility. Most of her 8th grade teachers didn't even know what a 504 was. Because she has RND in her hands and can't write, we're getting her a lightweight ultrabook laptop to take notes with in class as much as she can.
I am concerned about the crowded hallways, getting bumped, walking to her locker (which we requested a central location) as well as just keeping up with all of the work and making enough classes to make it through, not to mention having a somewhat normal social life.

The straps size, type of material, weight of the bag, all these things can make a BIG difference, and it's just something she'd have to try on. Instead of notebooks, loose leaf papers in a peachy folder would be lighter.

If vibrations and noise bother her, it's going to be really tough. Maybe even a part time schedule should be considered? That way she could meet friends and socialize, but could do some work from home?

Even scheduling her in classes that have fewer students might help. The counselors will know which are good, just not quite so popular.

My son was given special accommodations to take online classes at various times because he had gone through an accelerated math program through John Hopkins and Stanford. BYU had some interesting choices for online classes, etc. An opportunity to be able to come home early or go to a quiet library 1/2 way through her day might be really appealing.

My adaptive PE class was great btw. There were 6 of us, instead of 60. And it was similar to PT in many ways. They might allow her to substitute a water exercise program (warm water classses at the YMCA are often available) as well.

Good luck to you both!

hello. if my children go in to school with an issue moving through halls or carrying books etc, the school slots 5 minutes before each ned of class to move through halls with out the risk of bumps and what not, but also the allow a student helper to aid the injured or disabled person. If permanently disabled the school uses one of the aids to accompany the disabled person for what ever they need.(public school by the way) I hope that this would be the same in all public schools in the USA. hope that helps and or gives you more ideas. also the libraries here also supply needed support to disable children RE computer text books or audio text and with the iPods now you can move chapter to chapter and IPODS are day to carry much smaller than a nooks. My public library also lends out iPads. if you have a mack it might help for taking notes in school and with iCloud it automatically updates on your home mack.. just a thought.. an expensive one if you have to buy but its worth asking the library and the school. also take a meeting with guidance counsel and principal ,explain limitations, educate them on RSD. and see if they have any other ideas that might work.. good luck to you.

I know you said she can't carry anything or pull a rolling bag, could she push a small cart? Just another thought. Also maybe a fanny pack or tool belt (folders might fit.) to wear around the waist would help carrier smaller items. Maybe you can use carabiner clips to connect folders/notebooks to the tool belt. Also, a half apron might be useful. She might be eligible for an aid though, especially with her limitations. Something else to look into.

If not, I have seen the cafeteria staff at many schools carry lunch for students who are injured. Maybe a system could be worked out where her lunch is given to the office when she brings and they send it to the cafeteria at her lunch time if she brings and if she buys a cafeteria worker could carry it for her. Consider talking to them ahead of time and just making them aware of rsd.