puppylove Posted December 3, 2011 Report Share Posted December 3, 2011 I have been going to many doctors and have had symptoms for about three years. I'm in tenth grade. At first I missed a lot of school, but not enough to where I couldn't catch up. Then I started missing more as my symptoms got worse and my normally good grades started going way down. Now I barely ever make it in to school for one class in the afternoon and I am failing all my classes. I am a perfectionist and I used to get straight A's so this is really hard for me. I wan't to start homebound schooling but I can't until I get an actual diagnosis from my cardio (TTT next week), and even then I can't do all homebound. My school has made all of this very difficult for me, they don't know what POTS is exactly and they act like i'm skipping school. How am I supposed to come to school when I can't walk down the hallway? How do you start homebound schooling, what's it like? Are there any other options? I know there are different rules for different places regarding school but I was just wondering... Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 4, 2011 Report Share Posted December 4, 2011 Oh sweetie- I believe you & my heart breaks for what you are going through. My son, was/is also a straight "A" student and had to drop out for a while (almost a year) while he got his DX and hammered out a treatment plan. This is a cruel illness, especially when it strikes young people as soooo much is expected of you.Can your Mom or Dad advocate for you? One of them needs to go to your school principal and explain that you are NOT playing hookey (ditching school.) You are SICK. You have a rare dysfunction of your autonomic nervous system. It affects your ability to maintain your heart rate, blood pressure, body temperature, and even your GI tract- all of the things that should occur automatically. Getting a specific diagnosis and treatment plan takes time as there are so few specialists in the US.Your Mom or Dad needs to tell the school that they are in violation of the Americans with Disabilities Act of 1990 and Section 504 of the Rehabilitation Act of 1973, which prohibit discrimination on the basis of disability. A simple letter from your pediatrician describing symptoms, any diagnostic findings, and a description of specialists that you will soon see should be enough documentation for NOW. The school (given it is a public school) MUST set up homebound tutoring and support you OR you can sue them for violating federal law.If you need help finding a doctor, let us know. We have recommendations for you. Go to your principal first thing Monday AM with your parents. You need to stop worrying about school and begin focusing on healing and resting. Try to line up your homebound tutor later in the day so that you can sleep in- as mornings are rough for many of us.Big Hugs from another Mama whose been though this. I'm so proud of you.Julie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted December 4, 2011 Report Share Posted December 4, 2011 You are definitely not alone. My son is now in the 11th grade and just started back to school after missing 3 years. Since he missed so much, non stop, he took on line classes and homebound in order to have a full schedule and be able to graduate on time. His homebound classes were also on line since he was not attending school at all. With the homebound on line classes though, he received a homebound teacher to go over the material with him.He is still signed up for homebound to help him when he is unable to attend and stay caught up. Once you get the paperwork filled out by your doctor also either get a 504 plan or an IEP. My son was also a gifted student and very athletic so we can relate to your issues.Like Julie said, your school is required to make sure you get these things through the ADA, public school. Our school has actually bent over backwards helping us get my son the education he deserves, but I've heard other stories that were the opposite. Hopefully, your school will get you the help you need that they are REQUIRED to do.Check what on line classes are available through your state that your local school would accept. In Missouri, it is called MoVIp. Our state pays for these classes for the medically fragile, doctors note needs to be filled out, but seats are limited. Our school district picked up the tab last year and was reimbursed by the state. Your school counselor should be able to help you with all of this, that is who helped us out.Christy Quote Link to comment Share on other sites More sharing options...
puppylove Posted December 4, 2011 Author Report Share Posted December 4, 2011 My parents and I have been working with the school and counslers but I guess they have been having problems becuase I have not gotten a definite diagnosis yet (it took so long to get a TTT sheduled). My pedeatrician had wriitten a vauge letter about how I was in the process of finding out what was wrong with me but that was not good enough for the school system for some reason. My parents have been supporting me and advocating for me the whole time. They have a meeting schduled with my principle this coming week. Thanks for being so nice, it feels good to know i'm not alone. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted December 4, 2011 Report Share Posted December 4, 2011 My son was on homebound for a year without an official diagnosis. The doctor listed symptoms, such as intractable nausea, migraines, etc. As long as the doctor fills out the doctor portion of the homebound application, there isn't much they can do.Christy Quote Link to comment Share on other sites More sharing options...
puppylove Posted December 8, 2011 Author Report Share Posted December 8, 2011 Now that I have a POTS diagnosis my my Mom is trying to work with the school to get me started in homebound schooling. She called and emailed my schools social worker . The school social worker sent back a nasty email about how my teachers at school needed to keep giving me work and I couldn't start homebound until we get everything in order and for classes like PE and art I couldn't do homebound at all. I just can't believe how mean these people are being... Luckily my principal is nice so we are just going to deal with him. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 8, 2011 Report Share Posted December 8, 2011 Yikes! I'm glad at least the principal is understanding. It's like they're asking you to ignore how you're feeling and jeopardize your health because it is inconvenient to them. There are laws that protect students who have a medically validated disability. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted December 8, 2011 Report Share Posted December 8, 2011 Our school district gives us a homebound teacher for 5 hours per week. She is currently teaching my son english, geology and geometry through an on line program. To get the rest of the courses in we are signed up for on line classes. He took art appreciation, music appreciation and many other electives through those on line classes. For homebound, he isn't signed up for intermittent but for full time which allowed him to do the homebound on line classes instead of classwork from school.The school allowed us to keep track of his water jogging that the doctor wanted him to do over the summer. After 60 hours they gave him credit for a 1/2 PE credit. He just completed 60 hours of PT at the Mayo that they will give him the other 1/2 credit of PE for. You have to get creative to get all of your credits in if you want to graduate on time with your class.Christy Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 8, 2011 Report Share Posted December 8, 2011 Our state has several online charter schools. Perhaps that would be an option? Quote Link to comment Share on other sites More sharing options...
mully2014 Posted December 8, 2011 Report Share Posted December 8, 2011 It is definetly overwhelming at first but as you start to get things figured out with your condition and with the school, it will get better. I'm also in 10th grade so I know that it is really hard to catch up with schoolwork and that people can really not be understanding. I hope that your doctors get you started on a good treatment plan and that you won't have to be homebound because that can be really tough to deal with emotionally and socially. Wish you the best! Quote Link to comment Share on other sites More sharing options...
dakota Posted December 8, 2011 Report Share Posted December 8, 2011 I am very sorry that you are going through this. My daughter went on homebound schooling in 10th grade as well. The site dynakids.org has some good information that you can pass along to the school and any homebound teachers you might get so that they will be a bit more famiiar with dysautonomia and what you are going through. I hope they will begin to work a little better with you so that you can get things worked out for your education. Quote Link to comment Share on other sites More sharing options...
jknh9 Posted December 9, 2011 Report Share Posted December 9, 2011 Hang in there! I'm glad you have people going to bat for you. 10th grade is hard enough already!I can definitely relate, although my symptoms didn't become debilitating until I was about 24, and at 26 I had to miss tons of classes in my Master's program. I was able to finish last spring, although I had already been accepted and enrolled as a PhD student for Fall 2011, which I had to give up because of POTS & NCS. I work from home as a researcher these days, and when I think about my schedule in high school, I feel how far away I am from functioning at a normal level. Quote Link to comment Share on other sites More sharing options...
bkweavers Posted December 12, 2011 Report Share Posted December 12, 2011 I am so sorry to hear about the trouble your school is giving you. You certainly don't need the extra stress! My daughter has been in special education since she became ill. Your parents may have a fight coming and they need to educate your school as to what POTS is like. You may look healthy to them, but feel completely miserable. I agree with Dakota to go to on dynakids.org. They have so much good information on there to help people understand your illness.If your principal is on your side, I would tell him about the social worker and the nasty email. It's the principal's job to deal with his staff!Try not to worry about your grades. I know it's easier said than done but you need to concentrate on your health and taking good care of yourself. You also need to try and stay connected with friends. It's so important at your age to stay socially connected.Good luck and God bless!Brenda Quote Link to comment Share on other sites More sharing options...
surfgirl14 Posted December 12, 2011 Report Share Posted December 12, 2011 Hey. I just turned 18 years old and know what it is like to be a teenager suffering from it. I started having symptoms in 9th grade and no one could tell me what was wrong it took them until I was in 12th grade to finally diagnose me with POTS. I def. know what it is like to have to juggle school while having a chronic illness. I am sorry to hear that you are having to go through this. I actually ended up doing half day homebound school my 12th grade year. I started homebound becuae I was just like you and could barly make it to school let alone walk down the hallways. My doctor filled out this form that the school has for homebound. Homebound it actually not bad and made it very easy for me to finish school. I had mostly online classes but if you don't a teacher from you school or princibal/ assistant etc. will bring you your assighments (like to your home). this is how it is done where I live which is Charlotte NC. If you need anything or anyone to talk to please feel free to message me. I know how difficult it can be being a teenager with this. I wish all the best, and hope things get better. Quote Link to comment Share on other sites More sharing options...
puppylove Posted December 12, 2011 Author Report Share Posted December 12, 2011 Thanks so much! Tomorrow someone from my school is coming to fill out the forms to do some homebound schooling. Hopefully this will make things a little easier! Quote Link to comment Share on other sites More sharing options...
surfgirl14 Posted December 13, 2011 Report Share Posted December 13, 2011 Wish you all the best! Quote Link to comment Share on other sites More sharing options...
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