Pots Teen Looking For College

[mplocki]

Hi,

My son was diagnosed with POTS in 5th grade (after 8 years of trying to find a diagnosis and after watching the show Medical Mysteries) but it became much worse in high school. With missing so much school his grades are not great. Regardless, he is still interested in attending college. He is still deciding a field of study, but is interested in computer science and/or psychology. Does anyone know of colleges which are POTS 'aware' or at least are more flexible and offer support for individuals with invisible disabilities?

Merry

[Sunshinegirl]

I went to Graduate school online. It was the best choice for me because I could work at my own pace, in the middle of the night and reclined at any point. I had due dates and such but got disability accommodations that I did not have to use much. A degree in psychology isn't worth much because you will eventually have to get up and go whether you like it or not. Computer science might provide a more "workable" career environment. The last thing he needs is student debt that he is not well enough to work off.

Hope that helps.

[corina]

Hi Merry! I'm not in the US but thought it might be helpful to mention in which State you are looking for a college? I really hope tour son will be able to find a one that suits him and his needs. Also, it may very well be that he will get better in time as it seems that the young ones have a pretty good prognosis (depending on what causes his POTS that is of course!)

[Dyspatient]

I worked in college disability services (DS) for 5 years. My sense is that you're going to have a tough time finding a school that's POTS-aware, just because this is so specific a diagnosis. And not terribly common, in terms of diagnosis, not necessarily incidence. Fortunately, there is a lot of functional need/accommodation overlap with other better known illnesses like chronic fatigue syndrome and some symptoms of MS.

I think the big challenge will be finding a school that is PHYSICAL disability aware, and not just focused on learning disabilities, in their DS offices. And that can be assessed initially by looking at their DS office websites, seeing how much, if any, air time they give to non-LD disabilities. If there is no mention of them but lots of emphasis on LD, I recommend putting them on the lower ranked list. And nothing can substitute for a visit, with an appointment at the DS office. Plan for an hour at least, and plan to send in functional limitations and diagnosis confirmation letters from docs. That's all they need, if they say they need "testing", odds are they are talking about LD again, just fyi. At an appointment, you can get a sense for the physical lay out of the campus and ask about their experience in accommodating students with needs like your son's. Ask what sorts of accommodations they would recommend for his needs, and ask what sorts of challenges they see students facing with those needs and accommodations. You may not get a 100%, not sunny-sided answer to the last question, but how they answer it can tell you a lot. If they say "no one ever has any problems with priority seating in classes" that's a lie, and you'll know it's a lie because there are always some issues. You want to get a sense for how they handle those issues when they come up. Are they proactive with faculty? Do they offer support for students in self advocacy? How is disclosure of accommodations handled with faculty? Is it done through their office or is it entirely up to the student?

Lastly, based on my own experiences as a POTSy, undecided, smart rising senior without the high grades and record of scholastic achievement to back that up, I would HIGHLY recommend that you talk with him about the possibility of taking the first year part time at a local community college or state school and living at home, if the commute can be easily handled. If you have a school that is close by, going there part time would let him knock out a few credits while keeping his living arrangement stable and quiet (unlike a dorm, ugh, awful for people with chronic health problems and there's no accommodation that can deal with that). It might also give him a chance to see what subjects he likes and might want to major in before he takes that plunge. It will prepare him better for full time school. Keep in mind that full time may not be an option for him, and navigating what the school counts as full time vs. what the federal government counts as full time for financial aid purposes will be something to look into. I did much MUCH better as a nontrad undergrad who lived off campus in a stable, "grown up" apartment and went to a local non-trad friendly state school part time. When it comes to college, one size does NOT fit all. Keep that in mind and help your son to see it. Nothing wrong with a nontraditional path through higher ed.

Good luck!

[Dyspatient]

Oh btw, psychology + computer science = cognitive science!

[Eillyre]

As a POTSy just about to graduate from college, I thought I'd chip in a few thoughts about my experience at Rutgers University in NJ.

I didn't interact a great deal with the disability office because I I found ways to function without involving them most of the time. All I requested were initial university placement testing in a quiet room and an additional 25% time on very short exams to make up for brain fog issues--I only used that accommodation once in a while for the first couple of years as most professors gave plenty of time anyhow. My disability advisor was supportive; I even wondered if he looked up POTS because he asked if I needed an air-conditioned or first-floor classroom (to avoid doing stairs) or special parking permit to minimize walking distances without me mentioning any physical limitations.

I did very well in spite of many limiting factors by creatively adjusting to them. The main keys to my survival included:

1) Attending part-time when needed. It was more expensive, but a necessity several semesters in my case. The university actually has a relatively large non-traditional student population so it didn't give me a hard time about it. By taking summer courses, I was able to finish an intense 4-year B.S. program with an additional minor and certificate in 6.5 years. It was long and wearing, but I had fully anticipated taking 7-8 years at the beginning. Life's not a race anyhow….

2) Living off-campus (at my parents home) and commuting to school. It meant that I didn't get to partake in the usual college out-of-class socialization, but it allowed me to rest after classes without dealing with all of the noise and interruptions typical of dorm life. I still made some close friends and participated judiciously in social events, but survival was my main goal. One of my classmates who commuted 1.5 hours to school sometimes crashed at our house overnight and loved how much work he could get done in my quiet workroom compared to at school when all the architecture students were getting punchy with sleep-deprivation!

3) Building a good reputation from the start as a bright, dedicated student. Since I smiled, turned in my assignments on time, had excellent participation in class as a rule, and was known for always producing high quality work, faculty members were cooperative when I occasionally had to take a little time off if I was getting burned out.

Feel free to pm me if you're interested in other strategies that I found helpful in dealing with school, going to conferences with the department, etc. Best of luck to your son!

[SarahA33]

Eillyre,

You made some excellent points and congratulations on your accomplishments! You are certainly an encouragement to others for not giving up and finding ways around your illness. Much luck to you on the next phase in your life!


Dyspatient,

I really like you mentioned "When it comes to college, one size does not fit all" and also " Nothing wrong with a nontraditional path through higher ed" Well put!

I think that's important for new or returning students to keep in mind, it was in my case. I started off the traditional college route but then had to finish with mostly online classes. It was a tremendous lifesaver for me! Best of luck to you also and thanks for sharing!

Sarah

[Eillyre]

SarahA33 & Dyspatient, great points about taking online classes. I did some online classes through our local adult school before starting at the university, which was a great, inexpensive way to build some new skills and get back into studying after being so disabled.

I also took a couple of hybrid classes at Rutgers--we met once a week in person, but did most coursework online. It was a nice way to get some in-class time, but still have the flexibility to work around my health issues.

Mplocki, you mentioned that your son was having trouble with grades because he had to miss so much school from illness. Some of our local libraries have DVDs and CDs of lectures by the Teaching Company which can be a helpful resource when prepping for college. I've watched MANY of their courses (some lecturers are better than others), and used some of their math series to prepare for university placement exams after years of being away from math. It was helpful being able to re-wind and watch as many times as I needed.

[DADofPotsSon]

I had to deal with this issue about 10 years ago! My son#2 (H-EDS, NCS/POTS) went off to college with a desire to become a Civil Engineer. Fortunately he picked a college which was about an hour away, and he stayed there and took a lighter load and also went thru the summer months to classes to keep up the pace, eventually graduating in 4.5 years.

I met with the Campus Security about his problem of NCS/POTS, and convulsive syncope and established a good relationship with them right away which in the long run proved to work out very well. He also set up on both his computer and my computers at home and work an old software called AIM which allowed him to post when he was in class or taking naps etc. A no response in a certain amount of time meant a call to campus security to check on him. On a couple of occasions he was found to be in a full POTS episode and a couple other times just forgot to post due to brain fog.

His college roommate was also helpful and had my cell phone number to call when needed, in his later years he roomed alone but always on campus. As I think about it, constant communication appears to be the best thing one can use.

DADofPotsSon