Accomodations At Uni

[Elfie]

Hey everyone,

I am sure this is on the forum somewhere, but I can't find it. I am heading back down to college soon and need to schedule an appointment with Disability services. Last semester was the first semester I was eligible for services as I had just been diagnosed with POTs after struggling with the symptoms for almost three years. I went into the meeting with the Disability services director (who handles all incoming students at my school) pretty clueless. Of course, he had never heard of POTs or dysautonomia before. He expected me to pretty much lay out what accommodations I wanted. However, I had no idea what he considered appropriate or what services were available. I was particularly concerned about the fact that I might have to miss the occasional lecture and several of my professors have attendance policies. He told me that that was not a reasonable accommodation. Everything I brought up he considered unreasonable. He provided me no guidance as to what would be appropriate or what he could do to help me even though I educated him about what my problems with POTs regarding school are. He just made me guess at what he would be able to do and then shut me down on everything I asked for. He got very angry with me like I was wasting his time. I felt as if my school has a horrible disability policy or the director was out to get me because dysautonomia isn't a "real" disability. In the end he wrote me a note for me to give to my professors asking to be lenient with absences, but not with makeup work. The note was extremely degrading. At that point I'd be d**ned if I was going to give that note to my professors. I was almost in tears after that appointment.

However, this semester I have a hard course load and I am determined to make it the best semester for me. That means I need to take another trip to disability services. So, I was wondering what kind of accommodations you all would or have requested? I have most of the typical dysautonomia symptoms. I have the typical brain fog and concentration issues which really affect my schoolwork. My college campus is big and I have to walk between classes (most of the buildings are not accessible by car). This is my senior year and I need to get the classes that I need to get and sometimes that means having to quickly hoof it between classes without time to get blood back in my brain. I also sometimes have to carry a heavy bag with books. Sometimes I get dizzy from sitting in class for such a long time with my feet down and not being able to walk around. Having to present orally is the worst (which is new) because I now tend to stutter (not a nervous stutter, like a pathological one) when I am stressed or have to speak when standing up. I have problems with regulating my temperature in hot or freezing classrooms. Especially if I have to go from 103 degrees to 63 or 35 to 78. I also get sick really easy. I was having problems last semester not getting information about papers and projects soon enough for my liking. I ended up with everything piled on top of one another and it made it really hard for me to complete things.

[juliegee]

Oh Dear Elfie-

My heart breaks for you. I get the bind you are describing. My son is 17 y/o and I have repeatedly struggled with his schools to provide the accomodations that he needs.

I assume that you are in the US. (If not. disregard most of this.) The good news, YES, your university (even if it's private- it still receives federal funds) MUST comply with Section 504 of the Rehabilitation Act & Title II of the Americans with Disability Act. To fully understand your responsibilities and rights under these protections, go to: www.ed.gov You may be able to view a copy of a booklet entitled: Students With Disabilities Preparing for Postsecondary Education. If not, order a free copy. It arrives in just a few days.

The bad news, Elfie...getting these accomodations will require a good amount of effort on your part. As a senior (with one semester left?) you probably don't want to jump through all of the hoops that the government/university may make you go through. Even though your DX is medical. It affects you cognitively and some of the accomodations that you need in order to "level the playing field" (NOT GIVE YOU AN UNFAIR ADVANTAGE) are academic in nature. They are things like, having extended time on quizzes and tests; been given adequate warning before a quiz or test; having a notetaker, etc. You need to have a current psycho/educational assessment to quantify your cognitive deficits.

My recommendation: If your medical DX is fairly current (I think within 3 years), I would hire a professional educational advocate to go to bat for you. I know you probably hate to spend the money and go to the trouble. But, Elfie, these are accomodations you should have been getting all along. Only you can weigh out whether or not you can muddle through without them in place. The gist of this professional's argument needs to be: "Look, you are AWARE that Elfie has this substantiated disability. She has tried repeatedly to get help through Student Services and she has repeatedly been turned down. You KNOW you are in violation of Section 504 of the Rehabilitation Act & Title II of the Americans with Disabilities Act. You are preventing Elfie from receiving an equal opportunity to receive an education as her non-impaired peers. We may take this a step further....So, let's make a deal. Elfie needs X, Y, and Z now.

Read the booklet and get an idea of what you could ask for. For instance, if your illness prevents you from attending a lecture, the school is supposed to provide you with a TTY in your dorm room so that you are NOT deprived of the information your peers receive. Once you & your advocate arrive at a fair & appropriate list of accomodations or "academic adjustments", have the doctor who DXed you write a letter explaining that these are necessary in order for you to be educationally successful. You are skipping steps by not doing a psycho-educational evaluation, but under the circumstances (you are about to graduate!) I think the school may cooperate.

I know this seems like an awful lot of work for a student who's already "swimming as fast as she can to stay afloat"....but it's probably the fastest way to get the school's support. This is definitely one instance where NOT spending the money for an advocate could hurt you. He/she will know how to make doors open faster. It may be the best couple of hundred $ you ever spent.

I am in awe of your accomplishments and am sending lots of encouragement your way, Elfie. Go get 'em. We're all behind you.

Hugs-

Julie

[erikainorlando]

I personally would ask for a wheelchair to get around campus if you don't already have one. I would also ask if I could sit with my feet up and in a silightly reclined position. (I swear I could rule the world if I could jjust recline!!) Furthermore...I usually can only be learning or committed to doing anything with a brain for a few hours a day..I would have to adjust my course load. AND most importantly I wouold have to take it easy...stress and me don't mix. Slowly and calmly are words to live by for this POTS girl.

Good luck.

[dakota]

My hat goes off to you, Elfie, for your perseverance these past few years in school. My 15 year old does not attend high school any more, because she was unable to tolerate the same things that you are putting up with on a daily basis. Hang in there, you only have one year left!

Thank you, Julie, for your great advice. I have just ordered a copy of the booklet that you mentioned. I do think it helps sometimes to have someone else stand up for you in cases like this, someone who is perceived as having inside knowledge of the system. Sometimes they can get things done when an individual cannot.

Best of luck to you, Elfie, and Julie, to you and your son.

[juliegee]

http://www.uga.edu/gm/artman/publish/1207Disability.html

Hey Elfie,

I found this link that explores disability issues at UGA, in my backyard. It may help you feel less alone. There are literally thousand of college students, like yourself, struggling with these issues. This article touches on students with 'invisible illnesses" like yours.

All the best-

Julie

[Elfie]

Thank you both for your help! I'm sorry I haven't replied back but have been busy with returning to school. I was hoping a few more people would jump in (although you both provided good info). I guess I just have a hard time decide what to ask for as I have no experience with this and am not getting much help from the school.

I would love to be able to just cut my course load but I am on scholarship and it requires taking 15 credit hours a semester. I have already asked if they can make a exception, but was refused. I need my scholarship to pay for my last semester (or last two semesters if I took fewer credits) so it isn't really a possibility.

Today was my first day of classes and the homework/study load may not be too bad -- at least I hope my perception of that is correct. However, these are classes I really need to be alert and have a good memory during. Today wasn't too bad, but if I get run down or flare I could see myself struggling. I have the weekend to think about accommodations and I might run it by the people on the forum before I go to my meeting.

I also need to find a cardiologist because my heart rate has been was way too high today. No wonder I am so tired!

Thank you all again!

DYNA kids also has a great brochure on accommodations for college students, I don't have the link but a quick search will lead you to it.

[flop]

If you can split your credits over two semesters then that may be one of the best ways to give yourself a good shot at getting good grades.

POTS related accommodations that I can think of would include:

wheelchair for getting between classes

(someone to push the wheelchair if it is a manual chair)

stool so you can raise your feet in class

access to cold drinking water

temperature to be kept within certain range in your classrooms (lecturers to turn heating up or open windows before your classes)

facilities to "recharge" a cooling vest (if you wear one)

lecture slides provided as handouts

allowed to tape-record lectures so that you can listen again when lying flat

allowed to get a friend to record lectures if you are too ill to attend yourself

advance warning of tests and essay deadlines.

Just a few thought, hope you manage to get the accommodations you need to let you suceed in your studies.

Flop

[juliegee]

If your cognitive fog prevents you from finishing assessments as quickly as your peers, you might want to also add extended time on quizzes and tests.