College Disability

[Megan]

I know there have been other discussions on this, and I'll search for them later, but I'm so foggy-brained I can barely focus on what I'm thinking.

My school doesn't have a disability office. Instead, I go to the office of the dean. This seems to work fine for people with ADHD and dyslexia, but I'm such a unique case to them that they have apparently called in experts because they don't know what to do with me.

I go to a private school and, at least in the English department, after 2 absences you fail a class. This doesn't apply to me, although profs are allowed to appeal to a committee to try to stop unlimited absence allowance. (Apparently I have a good advocate on the current committee, because thus far no one has succeeded.)

I'm have a heck of a quarter right now, though, and I'm really behind in my work. This is due to waking up without vision, periods of unconsciousness, loss of use of my legs, etc, etc, any POTS symptom that makes it difficult for me to function outside of my bed. On the one hand, the dean's office is trying to help me. The assistant who does the work believes that I'm intelligent and hard-working and tries to do what she can for me. The head of my academic department, though, is "expressing concerns" again. She thinks that I'm being allowed too many benefits, and is worried about fairness to other students and such. I understand that being sick doesn't make me queen and I don't expect to be treated that way. I DO expect people to at least TRY to understand that I'm so far behind because at times I am not capable of doing the work, period. I'm busting my butt when I can, but lately I've needed 10-12 hours of sleep at night and that makes things difficult.

I know that I can do this work, I just can't do it on their schedule. I'm in my junior year, and I've made it through as a full time student so far, even if I have to go as minimum full time. I'm not willing to give up my full time status right now when I know I've hit a rough patch that I can get through. (Next quarter I am taking a lighter/easier load, which will help) One option I've been given is to withdraw for the quarter, but our quarters are 10 weeks long and this is week 7. I would be losing A LOT of work into classes that I'll have to take again if I withdraw.

Mostly I guess this is a rant, but for those of you in college or who have been through college with POTS, what does your university do to help you or what is the policy? Does it work for you or do you feel like you're always fighting the system?

I'm frustrated to tears.

Meg

[Ernie]

Hi,

I did my Bachelor of Psychology while fainting almost every day. I was so behind in my work that I always finished the day before the next semester started. I missed 5 weeks straigth because I was at NIH, 3 weeks straight because I was at Vanderbilt and many other times weeks because I was at the hospital at my place.

It was very very difficult for me. I did finish my degree because of will power but I decided to stop university after because it was too much stress for me. I am also disabled for life so there was no point in paying for schooling which would not be useful to work.

When I started my degree I thought that I would do what I could. Then when I got into the program I realized that it is a very competitive world and I had to perform. So this put extra stress on a disorder which cannot handle stress.

Half the time I fainted within 1 hour of an exam so they had to be re-scheduled. When I fainted it made me forget what I had studied. I had to re-study from scratch.

I don't know how a managed to complete my degree. I know that the disability department was very useful because without them I could never have completed.

I had friends at university who took notes for me when I was in the hospital. This helped me catch up.

Hope this helps.

[juliegee]

Oh Meg,

My heart breaks for you. My soon to be 16 y/o son is dealing with the same exact thing only at the high school level. When you have the energy, click on to the link below:

http://www.ldonline.org/article/6082

It's a great description of all of the civil protections that you are afforded. Even though you attend a private school, they most certainly receive some form of federal financial aid and therefore MUST conform to the Americans With disabilities Act and the 504 Rehabilitation Plan. Let the English Dean know that you are aware of your rights under these protections.

In the short run, I see why you want to finish this term. But, in the long run, you need quality of life and the ability to take in this wonderful expereince without the frantic pace. I am planning for my son to take at least 5 years for his Bachelor's. It is a sacrifice for us all- time and financially, but well worth it. Please look into a way you can spread it out to relieve medical and emotional stress on you. Taking a smaller schedule will allow you to still take care of yourself and enjoy the learning process.

I admire you greatly, Meg. You are a hero. You will make it, honey. No one knows how hard you are working just to keep your head above water. Hold that head high and keep on advocating for yourself and know that all of us are fighting with you.

Big Hugs-

Julie

[coloredblood]

Hey,

I was in my Sophomore year at a conservatory for performing arts when I got sick. I had to leave because it was too dangerous for me. My Family is in Atlanta, Ga so I moved back to them. The meds. make me much better and I'm working to be able to go back next fall, if the illness allows. I found that for making arrangements for my return I have gone to the head of my department, and 2 of my professors that know me and think highly of me. They are acting as my map for who I need to work with. If you get some people who can back you up it might be less stressful. You need an advocate. I hope that helps maybe a little. I'll be sending my thoughts and prayers your way. Much luck!

~nancy

[ajw4790]

Meg,

Hi, sorry that you have all this going on! I can definitely relate. I am not sure what words of advice etc. to say. It is always a multifactorial situation/decision depending on your personal situation, the program you are in, and the school you are at. I think as you likely know I have posted some of what I have recently went through along these lines with taking medical leave from school. I can look up links to those threads later if you want.

For yourself for this quarter could you drop/withdraw from 1 or 2 classes to lighten the load and then take them again later (a pain I know... but better than having to retake all, or have to take medical leave etc.) If you can for future quarters take lighter class loads and try for class times that work better for you that will likely be useful. As for this quarter, I would say it would have to depend on how you are feeling, how your classes are likely to play out the rest of the quarter, how behind you are at this point, and how lenient and accomodating your professors will be.

It sounds overall like they are trying and are good about working with you. So, I think they maybe able to help you out. Do you also work with an academic advisor that could work with the Dean's Office? That way they look at it from the academic end and then the Dean's Office can look at it from the disability end.

For myself I had a large Office of Disability Services to work with (had a specific counselor), and worked with the on campus ADA Coordinator (ADA lawyer), so the setup for me was different. It ended up not really working... They say that there is only so many things that they can do. I was always told that I could not get any longer for assignments due to health issues, because everyone else has things going on and they have to do it and get it in on time. So, I actually was never allowed to delay a due date, reschedule a test, etc. Also, they did not allow ANY absences, so if I remember correctly I had perfect attendence, except for leaving early a couple of time to go to a dr. appmt., or I rescheduled the class for another day (i.e. TH class, I took it MW). So, there was pretty much no wiggle room. I managed to do this for a few weeks less than two full years of school. Mini-rant: thing that bothers me, if you had personal issues (didn't even have to disclose) or family sick that people would get grace periods on work and miss multiple days of school with little problem.

Yes, it is like ALWAYS fighting the system! And, for my case then system and my health won over what I wanted and was trying so hard to do. I guess at this point weigh your options, take care of yourself, and try to not cause to many permenant blemishes on your record (sometimes it is better to just withdraw and retake the class, then fail and be on probation etc.). Also, if you have Stafford etc. loans check with your Office of Financial Aid before withdrawing to part time or medical leave because in some instances they return the rest of your tuition money for the rest of the quarter and want any overage returned as well. So, I ended up owing them $200 dollars, when I had been told time and time again I would be getting like $3,000 in return when I took medical leave.

I wish you the best of luck! I wish that you did not have to go through this as well! Try to stay positive, work with your school, and most importantly take care of yourself!

[ajw4790]

Hi Meg!

How is it going? Hope things are looking up!

[persephone]

Oh Meg, I've been where you are. I experienced this kind of hassle at OXford University, where I am a grad student. I won't go into the whole thing now, but the point is, they MUST accommodate you. If you have medical evidence/certificates, they MUST make adjustments- even if it means you take ten times as long to complete the degree.

I took six months longer than other students to finish my Master's, but my doctors and consultants backed me every step of the way. My bp was actually flatlining daily at this point, and I sustained many injuries through passing out, and also experienced hemiplegic migraines and episodes of prolonged syncope and tachycardia.

Keep pushing; don't stop- and when you finish your course, it will mean so much more. Email me if I can help

[MelissaCrystal]

I feel for you =( I haven't gotten anywhere with my University. I'm not legally disabled so they won't do anything special for me. I go to a private university though. I've been at it for over 4 years, and I only need a couple more classes, but they're the hardest ones. It's stupid, but I just can't handle the 3 absences=fail policy at my school. So I definitely feel for you and it does suck indeed that we have to work harder than normal people. I wish we had more help on this issue.

[DADofPotsSon]

Meg

The University that you are attending is a small college and they already have been tested by a POTS student, this was my son #2 in his freshman year. I agree we had some difficulties but we got the Dean straightened out and I must say by the end of the first year things went very well. He was called in to the dean's office many times due to so many emergency transports to the Hospital, and they did try to use the "well its our concern of your safety" saying. Also one time the EMT's ask him if he was taking drugs and his answer was well yes, but he thought in his incoherent state that they were talking about Toprol and Midodrene, but the University President was going to kick him out of school for illegal drug use! DOH! Again with a letter from several of his Dr's the whole issue was resolved. He is a senior there now, but his freshman year was one he does not remember much of due to his NCS/POTS and convulsive syncope.

So you could use him as an example if you have troubles. PM me and I will give you his name if you need it.

Good Luck

DADofPotsSon

[Megan]

Thanks for all the responses. It's nice to know I'm not alone in this.

Tomorrow I meet with the dean's office again, and we decide my fate for this quarter. I'll be sure to let you know how that goes.

Julie-

Thanks for the link. The problem we're having now is that they are giving me accommodations, but they're not sure where to draw the line. I can get extensions on my work, but right now I have a couple of papers that are weeks late, and they don't want to be unfair to other students. (My thought is that things are already unfair...)

Right now my biggest symptom is brain fog-hard to explain to other people, and it's not like I can "push through it" which is why I have outlines lying around my room but no actual papers written. It's gotten better so that I'm able to read without much difficulty (for a while I couldn't, and being an English major, that's just bad) but writing still seems like it's almost impossible. I don't know what the limit is when they can say, well, we tried to help and she still didn't come through, so disabled or not we're gonna throw her out or fail her. Every quarter I have finished my work, although a couple of times I've been allowed incompletes. When that has been the case, I've finished the work within those time limits. I just can't always get it done in "normal" time.

I'm beginning to wonder if I'm just too stubborn. I know that many students, healthy or not, take at least 5 years to graduate, but I've got this little life plan. My boyfriend and I aren't actually engaged yet, but the plan is to get married the summer after I graduate. Not graduating on time pushes that back. I know that things would still be okay and that my guy would be understanding (though frustrated at first), but I just can't. At the same time, I've been dreaming of just being in bed and doing nothing else. So frustrating!

Sorry for ranting so much,

Meg

[juliegee]

I've got my fingers crossed that your meeting goes well. We are dealing with the same thing at my son's school. They acknowledge his illness and subsequent LD, but they have a hard time agreeing to an accomodation. They are so worried that it will be unfair to the other students. It makes me crazy!!! Accomodations level the playing field. If these administrators/teachers could just spend one day in my sons (or your) body/mind they would realize what an uphill battle you are climbing.

Two things occur to me. You need a good medical advocate, who will talk with your dean or write a few paragraphs describing the extent of your current disability. The onther thing...have you had a good psycho-educational evaluation? There is a huge overlap between autonomic dysfunctions and LD's. Slow speed processing, focusing issues, etc. all go hand-in-hand with this illness. (My son's speed sprocessing as measured by the WISC IV is in 7th %ile!) Proving this to your dean with a written report will also force him/her to be more accomodating. I bet your school could do the testing there.

I understand that you have a plan and really hope you can stick to it. But, you are sick, sweetie. You deserve to enjoy the college experience and not always feel so overwhelmed. This need to move so fast (at the expense of yourself) is a hard habbit to break. Take it from someone who's been there. You, Meg, are important. Take care of yourself. By doing so, you will teach others around you how to care for you too.

Excuse my mothering. I just want to help. Let us know how your meeting goes!

Hugs-

Julie

[Megan]

Well, after a couple of meetings, I'm finishing out the quarter part time, without being kicked off campus or losing my scholarships (thankfully).

The suggestion was that I withdraw completely from this quarter, but I didn't want to lose the work I've put in when I've got a couple classes I'm caught up in. So I dropped a second class. Both classes I dropped I can take next fall.

As crazy as all this has been, my parents and I talked to a lawyer who specializes in disability stuff. We're going to make sure she has information and everything so if it happens again, we'll be ready. I'd hate to have to do that, but I don't want to be walked over, either.

I have an appointment with Bev in Toledo over fall break, so I'm hoping we can get some things worked out! Next quarter I have a lighter class load and no class until 10. Hoping for a better quarter!

Julie-I have not had psycho-educational evaluations. I guess I never thought about it. Definitely something I'll think about now. (And I don't mind the mothering so much. I hear the same things from my own mom )

Meg

[juliegee]

Well, not quite what you wanted.....but still a very good resolution. I know Bev will be a wonderful medical advocate. And, I'm so glad you and your parents have met with a disability lawyer who will help you figure out exactly what you need to provide to the dean for the next time. Keep the psycho-ed evaluation in the back of your mind. Speed processing, working memory, etc. are some of the things affected by dysautonomia and necessary for academic success. An evaluation will simply quantify where you stand and provide proof to the dean of how your medical disability affects your ability to do school work.

I pray this lighter load will allow you to take better care of yourself.

Hugs-

Julie

[nunibenuni]

I've had the same problems in high school. I'm applying to college now and am trying to find out about school's disability offices. It is nice to read other's experiences. Do you have any suggestions of things to ask colleges before I go? I hope that everything is going well!

[Megan]

Definitely ask about disability offices. I didn't think to do so when I was applying for college. My school doesn't have an office, just a person, which makes it more difficult for me. Good luck with the whole process!

Meg

[ajw4790]

Nunibenuni,

I didn't look at disability services prior to choosing a college, because I didn't have the diagnosis or need yet, but it sounds like a good idea. So, I am not familiar with what can be done prior to registering etc. I think taking into account issues like parking, accessibility to areas you will likely be, and how far between classes you may have to walk (especially with a small amount of time).

I also think that it is beneficial to go to a school that has an Office of Disability Services (or similar) that has sources of assistance and a counselor that you are assigned that you can contact as needed and get a timely response. I also found it helpful that my college was large enough to have a disablity coordinator that is a lawyer that if needed acts to assist you on your behalf in dealing with a particular program or professors.

And just overall any other services offerred. I knew someone in undergrad that due to disability was able to have a single dorm room (no roommates), so if you may have to live in a dorm that may also be something to look at.

Hope that helps!