Very Upset

[puppylove]

I don't know what I am going to do. I have not been to school except for a day here and there since last year. I am failing everything. I am still trying to get homebound/ online set up but the process is taking a very long time and my school social worker is not the best like I have said in pervious posts. I was supposed to be keeping up with my work by checking on my schools website and printing out the work. I have not been doing that so I know it's my fault things are like this. I just can't teach my self algebra when I'm doubled over with stomach pain, and this is my second time taking chinese 1 because I can't learn it when my brain fog is acting up. I used to get straight A's, it's like i'm not even the same person any more. I usually feel better in the summer but I might have to spend it in doors on the computer doing classes. I also might have to repeat 10th grade which means I would never see any of my friends who I barely see now. I wouldn't even graduate with them. I was supposed to graduate with honors and I had my whole highschool career planned out. And i'm on all kinds of medicines and I have a treatment plan but I keep feeling worse. Things are just looking so bad right now and no one in my family understands what i'm going through- I barely understand it. I'm sorry I just threw my self a pity party i just had to vent.

[issie]

Sorry darlin, that you are in such a difficult spot. It's hard enough being a teen and trying to have friends and figure out what direction you want your life to go . . .but then to have to deal with this illness on top of it all. I feel so bad for you. I've had this in my teen years too and it is very challenging. I however, wasn't on meds and seemed to manage to make it into my 50's before I even started taking prescription things. I've always used alternative things and some how got myself this far. With the meds causing brain fog and the illness causing brain fog . . .that's a double whammy. Maybe, you should try to take easier subjects - until you get through this spell. I was an honor student and always tried to take the hardest things and was in the top of my class - but, when I had a few years . . .about the age you are right now - I had to go back to regular paced classes and come out of the advanced classes. I did graduate with honors and medals and awards - and almost maintained an A average . . .it dropped a little because of the last few years of school. You can do it. You just have to adjust some things. You will be able to catch up, you may have to have someone read things to you when your eyes are going wonky and maybe more than once so your brain can process it. Get your friends involved- have them do study sessions with you. Maybe, try a different language that uses the alphabet and not have to learn new symbols (unless, there is a goal that you have with Chinese). All kinds of adjustments that can be made. Hang In There!!! Make sure you are communicating and letting people know the frustration that you're feeling. I bet people will understand more than you think.

Issie

[mully2014]

Aww I'm sorry you are having such a hard time! I hope that they can get the homebound schooling figured out soon so that can help you some of the time with getting work done. Are you gonna have a tutor come to your house every once in a while to help teach you some of the things because that might be a good thing to look into. It is the hardest at first adjusting to school with POTS but you will get it figured out and it will get better. Don't worry about graduating right now you have time. Just take care of yourself and then you can get the school stuff taken care of...your health is more important!

[janiedelite]

Sorry if you've already tried some of these suggestions, but I'm trying to think of how you could get your school to help you properly. Your parents could demand an IEP meeting at any time, and the special educator, social worker, and usually one of the vice principals will meet with them and discuss your case. In Oregon, parents have the right to ask for as many IEP's as the parents feel is necessary. The squeaky wheel gets the grease!

If you've already gone this route, your parents can always go above the school to the district level and complain to the head of special education. The ADA requires that the school make every effort to educate you in spite of your disabilities.

Lastly, it may be helpful to approach your doctor about this. Perhaps he/she can submit letters or phone calls to the school and help advocate for you. It's always helpful to have as much documentation of your illness and subsequent disabilities as possible, especially if you meet with the district or your school faculty.

I'm sorry to hear that you're struggling so much. It's heartbreaking to think that your social worker can look at your impeccable record and your current level of achievement and not think that you're more frustrated than anyone else with this situation! Keep pushing (or have your parents push) to get the help you need, even if it means the district has to educated you one-on-one.

[HopeSprings]

Aww, I just want to hug you. I'm sorry you have to worry about this stuff at your age, instead of just being carefree. You seem so adult and mature - you'll get this all worked out somehow. Everyone gave you great advice - hope some of those suggestions will be helpful. ((HUGS))

[Christy_D]

When we did my son's IEP, the school has a time limit which to get things done. I believe they are federal regulations. Google IEP and 504 plan and check on that. They can't just drag their feet with these issues. Our homebound teacher told us to date everything because of the time constraints the school was supposed to follow.

My son did classes all last summer to finish his sophomore classes so he can graduate with his class and stay on schedule. It wasn't too bad. He set up a schedule and paced himself and finished it all okay.

Christy

[puppylove]

Awww thanks- you guys are so nice! We have been trying the suggestions with the school and IEP stuff but I live in Virginia and apparently the school district is very strict in this type of thing. I even got my cardio involved with the school and my parents have set up multiple meetings. We only have one social worker for my school and she is "very busy". I just have trouble taking things one day at time and I get overwhelmed so easily now. You guys make me feel a lot better though!

[JennaC]

Good luck and focus on the things that you enjoy! I had some problems in high school and transferred to an independent study school in 10th grade. I didn't graduate with my friends and it seemed like a huge deal for a while, but things turned out fine. I am now in graduate school and have learned that you have rights as a disabled person. Asserting yourself can be hard, but hopefully it will relieve some of the stress around your school situation.

[Dizzysillyak]

Sorry to hear this. We went through some of this with my dd too. She missed a lot of school due to illnesses but not as much as you are. Have you looked at your diet ? My dd has switched to a plant based mostly vegan diet (no gluten or dairy !) and is feeling better than she has her whole life. Your parents may need to take you to an integrative doctor to get a handle on this ... They look for the CAUSES of illnesses but since they're MDs too, they know how to read all those medical tests. Then they decide which route to take for each patient ... just google integrative doctor in your area ... tc ... d

[Trach]

I am so very sorry you are having such a hard time. It is hard enough to deal with being sick on top your school giving you a difficult time.

Since you live in Virginia, have you or your parents contacted DYNAkids? DYNA is based in Virginia and may be able to offer local advice.

I looked up the Virginia website for 504 complaints. If you are having a problem with you 504 coordinator at your school, then have your parents contact in writing (email) the school district's 504 coordinator. If possible detail every meeting your parents have tried to set up with the school counselor, your diagnosis, and modifications needed under your 504. I would consider cc'ing your principal, your counselor, and possibly your teachers.

If you are still having a problem then you can file a complaint as follows:

File a complaint with the appropriate regional Office for Civil Rights. For additional information, contact:

U.S. Department of Education, Washington, D.C. 20202-1100

(800) 421-3481

www.ed.gov/ocr

E-mail: ocr@ed.gov

Some parents have resorted to engaging an education advocate to represent your interests. DYNA may

be able to recommend a good advocate, if needed. One of my friends had to have her daughter's

neurologist on a conference call with the advocate and the 504 committee, because the school was

giving her daughter such a difficult time.

We were in a school district that was very cooperative. However, there have been so several instances

where school districts have used every roadblock possible for students with dysautonomia. Many of

these school districts did not begin to make the proper accommodations until threatened with reporting to

state or federal officials. You deserve the right to accommodations. Do not let your school counselor's

lack of availability get you down.

Hang in there, life get better. . Make sure you take care of yourself first.