chronic illness

Parents Forum
1

<p>Just wondering what the experience is of other families/students dealing with chronic illness, that "waxes and wanes" while in college. Our daughter was doing well, signed up for a full course load, and then was forced to drop to 3 classes, because of the time taken up by her illness and treatment. She is now feeling that she needs to drop to 2, or else take a leave. She is fine between episodes, so she can do excellent work while well, but, as already mentioned, the problem is time, to get work done, as well as catch up on work missed while not well (which happens 2-3 days/week). </p>

<p>Taking a leave makes sense for someone with an acute problem that will get better, but it is looking like this is her life, so there is not going to be a point where she can say, "okay, I'm better now." She took a full courseload in the fall (some difficulty) but the winter has been awful.</p>

<p>She is at an Ivy League College with an accommodations office, but they said that, while they deliberate on giving her rare permission to take 2 classes, that their policy is usually to view a student incapable of doing 3, as being too sick to take 2. But that might mean she is too sick to go at all, because she is always going to have problems.</p>

<p>It is possible that this is the last frontier in "diversity" and "equal access," and I am curious to hear others' experiences. She got through high school, missing a lot of school, teaching herself and catching up, at top of her class, and is a very accomplished musician.</p>

<p>She cannot get the specific music curriculum and courses that she needs for what she wants to do, anywhere but a couple of top colleges and conservatories. So extension schools, continuing education, and taking part-time classes as the state university would not work.</p>

<p>Thanks for any input. We sure are tired of being trailblazers.</p>

2

<p>Have you tried asking for an incomplete in one of the courses? That would allow her to concentrate her effort in two classes now, and complete the work for the third course over the summer. She may be able to arrange the incomplete with the individual professor (or department), rather than having to work with the university/college administration.</p>

<p>Keep pushing these folks about this. I have a blind friend who graduated from Bryn Mawr back in 1979. She carried 3 courses each semester and graduated in five, rather than the usual four years. The college gave her that accommodation readily (and she started there 35 years ago so you’d think that a “peer” institution could pull this off in the 21st century) knowing that it would be difficult for her to keep up with all of the reading as the books were hard to get in braille or recorded forms.</p>

3

<p>I’m so sorry to hear about your daughter’s illness and its impact on her coursework. My own d is also a music major in a very intensive program. While she has struggled with allergy related illnesses, she has not had to drop classes. And she is on the upswing thank goodness and is getting good medical treatment. </p>

<p>It sounds like you have some hard questions to address which might include the question of whether or your D is well enough to really get full benefit from the music training. My next question is whether or not she is well enough to pursue the career she has chosen. </p>

<p>The life of a music major is grueling. My own daughter is taking 17 hours. This week she has 7 tests, 3 papers, an audition and potential call-back, and a required vocal competition out of town all between today and Friday. In her program many of the courses are sequential and if you haven’t taken the prerequisite courses, you can’t move on. I am assuming it it similar at other universities. It would be very difficult for your D to get through the music program only taking 2 courses at a time, even if they allowed it. </p>

<p>I hope you find a workable solution to this. I know the stress and worry that comes along with having a sick college student but certainly not to the scale you are experiencing. My best to your daughter and for a program that will work for her.</p>

4

<p>Is it time to re-evaluate her plan? If this is a life-long condition, is it time to consider a less demanding plan for the future? If she did manage to complete her music major, will she have the stamina to maintain a career in the field? I don’t know what the answer is but it sounds like it’s time for a difficult conversation with her about realistic expectations for the future. What type of career will be best suited for someone with this type of chronic condition?</p>

5

<p>Our family has had experience with this. The key issue was whether D would be able to return to a full schedule. If yes, the school would waive the minimum requirement for a semester — it was against their policy, but they’d do it. If serious illness-related issues were likely to recur, the school recommended withdrawal. D has had recurring episodes, but has managed them well.</p>

6

<p>I wouldn’t even consider speaking with your daughter about re-evaluating her future plans. I believe this is defeatist thinking that if digested by her could hurt her in the long run. She has to soldier through and do the best she can asking for as many accomodations as the university is rule-bound and honor-bound to give. She has already lost a lot to illness I am sure (I have a daughter still in hs with chronic health problems); don’t let her dreams for the future be another casualty of her illness. I also am pretty sure (you would have to confirm) the university was fully aware of her illness when she was accepted. No doubt what she was able to achieve in high school in spite of her condition weighed heavy in their decision to accept her.</p>

7

<p>I agree totally that re-evaluating future plans is not something your daughter should be doing at 19, especially in music composition! There are plenty of musicians with chronic disorders and more grueling careers than composition (e.g., Alisia Weilerstein, the young cellist, who has type-1 diabetes). Hopefully your daughter will be able to work her way through the problems she is having more effectively over time and her school will accommodate her!</p>

8

<p>Hi compmom, I actually am a college student who has something to say about this – while I didn’t have a “chronic illness,” depending on the definition, I did experience a certain kind of deterioration of health, which was a huge, huge burden, and is also this kind of “sometimes OK, sometimes not” type of thing. However, in my case it seems to be the kind of thing that got better with huge lifestyle changes + some help at the early stages.</p>

<p>I definitively think that the first thing your daughter needs to do is communicate to her professors what the situation is, and gather some time to really evaluate how to deal with the condition. Stressing out about how her grades are dying while she’s not feeling well, or something like that, is immensely hindering to health at these stages…</p>

<p>And once she’s sure that she has a grace period to think things over, I suggest she do exactly that. How to get on and give school a good shot amidst her health issues. Attacking the problem like this does wonders for one’s peace of mind – taking the attitude that “OK it’s all over” is the worst thing that can be done, I think. Most importantly though, she should not beat herself up over work she isn’t feeling well to do.</p>

<p>All of this advice is stuff I kept in mind as I was recovering. Basically, the semester after the one where I was having issues, I took an intellectually stimulating schedule, which was specifically geared, however, towards someone who could do a lot of work on his own time (i.e. just independent reading + problem sets), less class + discussion, i.e. so that I could rest when necessary.</p>

<p>Similar measures might benefit your daughter. It’s all a matter of adapting. One of my brilliant professors (of math) at Berkeley was diagnosed with MS at a period of his life, and he’s still managed to teach + adapt to doing great research under his condition. The class I took with him was one of the most well thought out, rigorous experiences, despite the fact his ability to lecture is impaired…maybe, let that be inspiration. Adapting to the situation and continuing life almost as if one is not ill at all is therapeutic in a refreshing way.</p>

<p>Best of luck to her, and I’m happy to say more - if I forget to check the thread, and there’s anything you think I could say, please PM me.</p>

9

<p>Thanks to all. However, I am shocked at the posts saying she should reevaluate her future dreams, and thank those who reacted to them. </p>

<p>There are many composers with health problems, many famous ones in fact. In fact, the string quartets she writes are often the most beautiful in the midst of pain. </p>

<p>Since age 4, she has dealt with type 1 diabetes, respiratory problems, migraines/seizures, pain issues, Raynaud’s and other autoimmune problems, and may have lupus (the MD is still waiting). She also had Lyme in middle school.</p>

<p>The Ivy League college (sorry to mention Ivy League again, but we thought they would be more enlightened) she chose was fully informed of her health conditions, and also we wrote admissions a letter about how she got through high school, with, as I said, periods of absences, teaching herself, and excelling. Since the age of 5, she has “soldiered through” and amazed everyone around her. On the other hand, she needs full permission NOT to be so amazing, at times, and I would love her to have the chance.</p>

<p>Last year, when endometriosis was at its peak, she still took 5 classes (mostly AP), studied in 3 tough classes at the New Engand Conservatory on Saturday (not for credit, out of passion), and had compositions played at some major colleges, some on commission. If you heard her music, you would not tell me to tell her to reevaluate her dreams.</p>

<p>This is exactly the kind of prejudice we are battling at the college, and that we have fought for 15 years- often very successfully. The high school, and her doctors, have told us that they have learned a lot from her, about continuing to live well despite these problems.</p>

<p>My post has brought some good ideas from people, including some private messages, and has strengthened my feeling that the school is failing her in some way. It is like pulling teeth to get cooperation, and they have been defeatist from the start.</p>

<p>They admitted her, and they can accommodate her. There are many ways to salvage the situation. She will finish, maybe in an extra year or two, but I have full confidence in her.</p>

10

<p>Actually, if you reread my post, I posed the question: “Is it time to …?” My intention was not to pull her dreams out from under her. I admitted that I did not have the answer. I merely posed questions that I felt would be relevant when discussing the issue with your daughter. I wish her well and hope all of her dreams come true.</p>

11

<p>Just to add that she chose this program because of the way the curriculum is laid out. She can get through the major taking 2 music classes each semester (in fact, she was taking a sophomore class as a freshman, to give herself leeway in case something happened), with a heavy dose of independent or one-on-one work in the two later years.</p>

<p>Tests and papers can be postponed, although she has avoided that mostly, until this past week.</p>

<p>She loves “grueling” rigorous work, and can do it just fine when the problems are waning rather than waxing. It is a matter of interest and drive, but she is also smart about pacing herself.</p>

<p>Conservatories tend to have classes all day, but in a college environment, generally there are only 1-2 classes/day, which is pretty doable except in a period of very increased symptoms, which can happen in a totally unpredictable way, for an unpredictable amount of time. In other words, times when it is physically impossible to go to class.</p>

<p>One thing that is needed is an overall plan, so that with each incident, she does not have to contact health services, a dean, a professor, and meet with a TF. Having a plan would greatly reduce stress, but the school may need some help figuring out how to do it. This seems to be new ground for them, I don’t know why.</p>

<p>I’m sure everyone meant well, but pretend you are me, or my daughter, and read some of the posts that are meant to be the voice of reality. I am not angry, was just surprised, and am only trying to get the point across.</p>

12

<p>Wow; just one of those conditions would be a challenge! But one way or the other, with the kind of determination you’ve described, your daughter will work this out and succeed! At the same time, I am not all that surprised to hear that her college is not so helpful; I’ve read and heard numerous tales of kids with various medical issues finding less help/sympathy than they expected at Harvard, Yale, and other schools. There was an article in the New Yorker awhile back about how Mother Harvard doesn’t coddle her young. Keep at 'em, though! Good luck.</p>

13

<p>Does your child’s college not have an Office of Accommodations? In the K-12 world, private schools generally don’t have to accommodate disabilities to the extent that public schools do… but I would think that Private Universities because of all the federal monies (research, student loans, etc) that flow into them would have to follow the Americans with Disabilities Act etc.</p>

<p>I would think that your best bet is for the university to designate one person as the person your DD notifies when she has a problem that interferes with her ability to do the work. I know that public universities have such a person. If no such person exists at your college, perhaps the school would be willing to speak to someone working in the field at another university or college. I am a big believer in the sharing of information, no need to always reinvent the wheel.</p>

<p>[Disability</a> Resource Center - Procedure for Disability-Related Absences and Extensions](<a href=“http://www.dissvcs.uga.edu/procedures/ProcedureforDisability-RelatedAbsences.php]Disability”>http://www.dissvcs.uga.edu/procedures/ProcedureforDisability-RelatedAbsences.php)</p>

<p>I know that this just adds unneeded stress onto your daughter. I hope you find a solution soon.</p>

14

<p>It looks like you’re essentially doing what I’d suggest – looking for a plan to make her path through college clear, and to make people aware of the situation, so that she can continue to work, but without constantly having to explain.</p>

<p>Achievers like her are tremendously inspiring to people around them, and I maintain, as much as possible, it is best to try to carry life on as if there is no issue at all – it’ll keep her and her family mentally healthy.</p>

15

<p>There is an accessible education office, and there are deans for each group of dorms. The problem is, they both play a role and it is sort of fragmented, so our daughter has to deal with both with each incident, and the particular roles each office plays have taken awhile to become clear-or still aren’t clear, actually. I don’t want to go into the deficiencies in attitude or action that we have run into, but I would not have come on here if all was going well.</p>

<p>I have gotten a lot of feedback here, and in messages, that are really appreciated. It is always good to figure out what is reasonable to ask (and at the postsecondary level, “reasonable” is the most appropriate word, since that is what is required…a little lower standard than for elementary, middle and high school).</p>

<p>My daughter has had a rough day, and I was not sure, at some point, how hard to fight, or whether it really would be best to leave. But she is really committed to staying if the course load can be reduced to two. The third course is one that the department had offered to waive for her in Sept., because she had already studied it in a way that was documented, so she can just take a placement exam and move on in the curriculum: she signed up for it to be “solid” in the subject and has found that she does not really need the intro course. So taking the two will enable her to continue at the pace she should be working at with her major.</p>

<p>When this crisis is all over, regardless of how she resolves it, I want to meet with someone at the college with some supervisory position and give them feedback on how things can be improved. I have heard from others, in the last few days, including the mom of a girl who is blind, who also have some suggestions for this particular school.</p>

<p>The meeting with the disabilities office to get permission for the course reduction is Thursday morning. I have shared some of this with our daughter and she feels more confident that she is asking for something that she deserves and that is fair and reasonable.</p>

<p>And, she is all caught up with her work for those two, despite a very rough week (and day) w/her health- including a substantial paper!</p>

16

<p>compmom:</p>

<p>When a student has a range of health problems, it takes time for the college to adjust and come up with a reasonable plan as each case is rather sui generis. Your D may not have as severe health problems as some other students (I am reminded of Brooke Ellison whom I sometimes encountered on my way to work) but in certain respect, she is harder to accommodate because her problems manifest themselves in sporadic episodes rather than consistently.<br>
Do you have some sense of how frequent her periods of ill health are? What duration? This might give the disabilities office and the dean a better sense of how to accommodate your D. Is your D on financial aid? In many cases, support depends on being a full-time student. Taking 3 courses would probably preserve her full time status, but taking only two would not.
If it is possible for you to arrange a meeting between the dean and a member of the disabilities office (and the director of undergraduate studies if at all possible), I’d suggest to do so. It might cut through a lot of red tape and allow you to come up with a realistic plan that would meet the very different requirements of each office/department.</p>

17

<p>It sounds as if your D needs an accommodation that allows her to take two courses at a time and remain in school. Period. Then, if she has semesters when she can take more than two courses at a time, great, but if she has to drop down to a half load, she won’t be jeopardizing her student status. </p>

<p>The school’s policy that a student who is too ill to take more than two courses is too ill to be there sounds arbitrary and certainly not in the spirit of the ADA. It seems to me that having a strong letter from your D’s physician indicating the specific plan that she requires and noting the health reasons that she requires this plan should be pretty high on the agenda. It is not as if you are asking for the school to provide something that is difficult for them to accomplish . They just have to let her take half as many courses as physically fit students. It is hard to see how this would even inconvenience anyone, let alone take any effort on the college’s part. And you certainly can’t make the same arguments about a music composition major needing to take a certain number of courses at once for educational reasons as have been made in the case of medical interns.</p>

<p>I would like to suggest that you PM tsdad and shawbridge, both of whom are very well versed in the issues you’ve raised, and ask them to please join this thread with their suggestions.</p>

<p>Finally, while I think that a meeting with all of the relevant parties is a good idea, I would suggest that you go accompanied by a non-threatening but very knowledgeable lawyer who practices in this particular area. The notion that colleges aren’t required to accomodate to the same extent as high schools does not give colleges license to do whatever they damn please in these situations and to justify themselves by hiding behind policies that ultimately discriminate against physically challenged students. The college should get the strong message that perhaps it would be more convenient and a lot less hassle and expense for them to do the right thing, and the lawyer could certainly signal this message without being combative and by trying to help orchestrate a collaborative solution.</p>

<p>You should know that at other colleges – including my son’s uni – it is not uncommon for severely LD students to be offered the possibility of taking less than a full load and still be counted as full time for purposes of maintaining scholarships and FA. I have also had conversations with an administrator at a top 5 uni within the past three years and she described a situation in which the uni had permitted a drastically reduced load for a student there in the face of physical limitations. (I don’t know if they have an explicit policy that allows this, but it was an accommodation they were willing to undertake.) </p>

<p>Good luck with this!</p>

18

<p>Thank you both so much. Our daughter is on full scholarship from the University, also including some local scholarships from high school graduation, but nothing from the federal government, so I am hoping that financially she is okay with 2 courses.</p>

<p>She has lengthy letters from 4 MD’s with a thorough list of the accommodations that might be needed at any time, and also a note from the neurologist explaining the special nature of neurological/brain issues, which cannot be “soldiered through” because lack of rest impedes recovery.</p>

<p>We emphazized in our letter that the problem is time, that the episodes and their treatment take time, but that in between, she functions fine. It’s just that it is not physically possible to stay caught up, with that loss of time, and trying to do that, as I said, impedes recovery from each episode.</p>

<p>Getting the dean and disabilities folks together, with a higher up to coordinate, is a great idea, as is bringing an advocate of some kind.</p>

<p>We will first wait to see how our daughter’s meeting goes tomorrow, and then get serious if she gets a no. Or do folks think we should just not let that happen at all, and get serious from the start?</p>

<p>This week is proving that our daughter can do very well taking the two. It has been a bad week, but she is all caught up and still enjoying her classes, despite pain, nausea and some neurological things (feeling unreal, right arm numb).</p>

<p>You are all giving me strength of purpose, which comes from a firmer sense that what we are asking for is right, and should be granted.</p>

<p>One other thing: the music course gave my daughter an extension on a paper until next week. She said no, that’s okay, I’ll get in Wed. (today). She’s always been like that.</p>

<p>Thanks and I will try to contact those two people mentioned. Take care!</p>

19

<p>If you daughter doesn’t get the desired results today, I encourage a meeting with all involved, including a professional advocate for your position. Things CAN be done if the college wants to do so.</p>

<p>A number of years ago I had a student with severe kidney disease. She was bright and motivated but pretty much every semester she had to drop courses or even withdraw completely as her condition ebbed and flowed. She was on government loans/grants but we were able to get waivers of the full-time requirements/progress toward degree rules as necessary. (It was a pain but our Director of Financial Aid was an angel and worked hard to get the waivers.)</p>

<p>Happy ending: She finally got her transplant. It was on a Tuesday and I was waiting until the weekend for her to feel better before I went to visit her in the hospital. No need for me to visit - that Friday (3 days after surgery!) she walked into my office looking better than I had ever seen her before. From then on she was fine, graduating within a few semesters, and went on to a HYPS grad program! </p>

<p>Good luck!!!</p>

20

<p>I third the motion for an advocate; there are lawyers who specialize in disability matters who will be knowledgable and experienced about it, and who can help navigate you through the process. Colleges have decades of experience with such things; one of the people I worked with contracted polio on a winter break from Harvard and he returned to college and then law school, with his mother pushing his wheelchair, and had a successful and long career.</p>