We had a meeting with the School on Wednesday about me returning back to School - I didn't go as i'm not feeling too good so just my mom went.

It went OK, the school seems to be a little bit more understanding about my condition. The School's just got a new nurse and my mom said she was really nice and a lot better than the old one and semt to want to know about RSD as she has never dealt with anybody suffering from it. The Nurse and my teachers also took the time to read up on RSD and watch the videos of the bad spasms in my leg and couldn't believe how bad this condition is.

The School want me to return for 1 and a half hours a day and then gradually build it up when I feel up to it. School said they would be lead by how I feel instead of them telling me what I should and shouldn't be doing this time as last time when I tried to go back to school last September it didn't go to plan as they were rushing things and not being that understanding. I want to try and concentrate on my chore subjects at the moment (Math, English and Science) and concentrate on the other subjects at a later date when I have caught up on all of the things I have missed out on. School said I could drop French as there is no way I will be able to pick things up after missing almost 2 years work. PE (Exercise) is out of the question so for that lesson they are going to arrange for me to do some catch up work from my chore subjects.

Because of my condition and struggles, my School has been allowed to have someone come in for at least 15 hours a week to try and help me. This person will carry my books, help me in classes such as Math because of my Dispraxia, help me concentrate, make sure no one picks on me because of condition etc. That should hopefully make things a bit easier for me as I wont have to carry all of my school books whilst either on crutches or in my wheelchair.

I will also be allowed out of lessons 10 minutes early with one of my friends so that I can take it easy and get to my next lesson in time. School's also going to be keeping my wheelchair in the nurses office so when I am having difficulty walking or in a lot of pain I can go and use it to make things easier.

The School want me to start back next Wednesday (the 1st), I can't believe how quick they want me to start!! I am soooo nervous and excited at the same time. Half of me says I am not ready physically and emotionally to go back to school but the other half of me says I need to go to school to have some normality back into my life. Both me and my mom didn't think I would be starting so quickly so we are in a rush to get all of my school things ready lol!I will start going to school 1 and a half hours a day and see how things go. If things don't go as well as we hope or I can't cope, I can get home tuition. I will also still continue to have Home Tuition on top of school to try and help me catch up.

My Teachers said my friends had been asking about me, that came as a HUGE schock as I haven't heard anything from them for almost a year. My best friend has broken her leg, my mom was like tell her to keep moving it lol !

The Psychologist at school was nice and my mom said she told her that I wanted to be a Psychologist or a PT when I'm older and she said that she would help me decide which subjects to take. I will see my Psychologist regullary once I return to school so that she can see how things are going, what I am struggeling with etc.

Well, i'm going to go and lay down - sorry for rambling, just wanted to let you all know how the appointment went.

Take care, Alison

Ali, that's just wonderful! I think the appt. went more than just OK.

It was smart of your Mom to have them watch the video of your leg symptoms. I, for one, couldn't believe how much you suffered until I watched it.

As far as your friends not checking in on you, I hope you won't take it too hard. It would have been so nice if they had, though.

I remember really liking this boy in 7th grade. When I found out he was in the hospital I wanted to visit him, but I just couldn't bring myself to pop in and say hello. Too awkward and shy I guess. And he was a BOY!

It sounds like the School has really decided to accommodate you. And they should. Happy you are getting a helper to assist you.

I hope you are able to get back in the swing of things very quickly. I'm so excited for you, Ali! Please keep us posted on your progress, k?

Ali, First of all you were not rambling doll! I could almost feel your excitment & nervousness in your post. An it made me feel the same way for you. I guess it doesn't matter what age you are because I just want you to understand when I lost my job people used to check on me too. But after awhile that all stopped. I don't talk to anyone from either of my two previous jobs anymore & I thought I had very good friends at both places not just coworkers. I think our conditions scare people. They don't know what to say & they can't make it better. They know are lives are drastically changed yet they get to go on living theirs. I hope everything goes well at school and that your pain is cntrolled enough that you can enjoy getting back into some kind of routine. I think the outside normal socialization would be proabably the thing I would look forward to the most. I think the comraderie at my last job is what I miss the most. I would bet it would be similar for you. We may age but our need for companionship don't change that much. Which I guess is why we are all drawn to support groups like this one. Take care & I will be thinking of you.
hugs, Dennny

AliI am so excited for you!!

Just from reading your threads, I find you to be a very strong and courageous young lady. I wish only the best for you

I am so happy things are working out for you. Please keep us posted

Oh Ali, I am so happy for you. School will be a welcome site after all the time you have been at home. Congratualtions. Take it slow and do what you can. How nice that your friends have been asking about you. I still owe you a package and haven't forgotten. I think of you often.
I am teaching now. I got my first teaching job in September. It is hard to keep going with the pain but I am managing. I teach resource room in the morning. I have three groups of two students in each group. The first two groups are kindergarteners that need help in learning to write their name and alphabet. The other group is a fifth grade group and we are working on writing. We are going to adopt a soldier to write to. The boys were excited about that project.
In the afternoon I am a special education pre-school teacher. This part of my job is the challenging part as I have to be able to move about and help the children. I have two students with autism and one with Cerbral Palsy. So I have to keep everyone safe. The autistic child screams, hits, kicks. I have had my RSD leg kicked a lot during my days. So far it hasn't been kicked on the most sensitive spot. I am just working through that pain. I think I get short at the end of the day with people and I don't mean to. Its the pain level is so high I can't do much else. I will have to talk more about RSD as I get known more. So far they have given me a key for the elevator to reduce the amount of stairs I would have to do and they are working on a specific parking place for me. I want to prove I can do the job. I love the work and working with the children is the best. It is so much fun. I know you will have a great time when you start at school. Just be kind to yourself and pace yourself on what you can do. Each day will be different for you. Take care sweetie.

Thats great news Ali- Hopefully school will provide you with a least some distraction from your pain. As always, keep us posted!

Love,

Debbbie

I would really like to thank you all for all of the best wishes and kind words - I truly appreciate them, you are all the best

I will definately keep you all updated on how school goes when I can. I start back for an hour and a half on Wednesday so at the moment we are busy getting all of my stationary, school uniform etc which is quite stressful! I re-start my home tuition tomorrow.

Thank you all so much once again,

Alison

Ali,

From the perspective of a really old guy (me - I'm 55.)

I think it is great that you are going to try to go back to school. Anything you can do to get back to doing things with people your age is going to help how you feel. You are wise enough to already know that some schoolmates will treat you differently. That goes without saying, but it is simply because they do not really understand what is going on. Do not take it personally. A lot of times people will be curious. Instead of trying to explain the whole condition over and over, might I suggest creating an "explanation letter" that you can give to people. This can be a summary of what RSD is, how it has affected you, and emphasize YOU ARE NOT CONTAIGOUS. You could hand this to anyone who is interested.

If your old friends have not visited you over the last year, it probably is not because they no longer care about you. It think it might be that people simply do not know how to act when they are visiting you. Even with adults, when I have been ill or in hospital, friends will stop in and do not know what to say. They are afraid of "doing the wrong thing." They do not want to dwell on why you are ill, and remind you about it. And, they don't want to tell you about all of the exciting things they are doing and also rub it in that you can't be there or do the same things. So, they are uncomfortable.

I hope you find that easing back into school works for you. I feel it's the best thing someone can do - get back to doing what others are, as much as possible.

Mike

Ali,
You school MUST accomadate you under the persons with disability ACT section 504. You are provided an aid, special tutoring, time to rest, take test untimed, use a tape recorder, notetaker, use a computer with software for dication,

I have Fybromyalgia among many other chronic issues and returned to college with accomadations.
My dd is under a 504 for panic/anxiety, school phobic. She was given the oppertunity to go back for one class, Art, in the morning.....Currently this fall I registered her for online cyber charter school. She is doing well, but is not disciplined to structure her day timely.

But, the classes were targeted to her gifted IQ, and to her anxiety when pressured. She had no social life the last two years, she was bullied and the principal did not validate her concerns, her tormented ehr as much as the bullies did badgering her that she just thinks people are hositle and teasing her. JERK! sHE Could not even reenter the school dors after that day.
But, if you think it could benefit you, there are several in the cyber charter with physical problems.
She attends connections academy. There are 25 field trips each month so socialization is not a problem.Also for PE there is an adaptive program. She can take yoga, horsebackriding, karate, etc. They contribute towards that cost. Also the online service is reimbursed.
the school district money goes to the cyber charter school so no tution. She gets a regular diploma if she can not get back, or decideds to stay through highschool. Fully accredited.

I know that the classes she currently takes are a year ahead and also gifted, more challanging the moind. Not just what the "silk road was" ut, were how the dynasties, structures, details of the building of the grand canal, oining Northern and southern china, the porciline, why silk was sought after, and more....just intodays lesson.. In school she would have just had that there was a silk road for trade and where it started and where it ended , to who used it.

As opposed to one hour a week homebound or in school, it is the best thing for her. She just has to structure her day better.
Good luck,
dianne
PS the 504 was developed with an IME, to accomadate the disabilities. YOUE ARE GIVEN THIS, NOT FIGHT FOR IT, OR THINK OF AS THEM GIVING YOU IT!

I wanted to wish you good luck going back to school. I hope everything works out. I was in 8th grade when I got my RSD and I only took the major courses like math, reading, social studies, and history. It worked out really good. It was really nice to get back to school and it wasn't a full day so that was really good for my RSD. Take Care Ali I will keep you in my prayers.

Laraine