<p>compmom, in HS, I did have a lot of success by listing the the accommodations that would work for a class like this one. It was easier to say, "here's what didn't work in HS" and "here's what did". Concreteness may be good as everyone in the hierarchy and especially the professors and concrete examples that can be copies may be incredibly helpful.</p>
<p>Well the concrete examples we did provide, and that were supported in MD letters, were ignored, so I am not sure they will pay attention to concrete examples from others. But we can certainly add them to the list for the MD's to sign.</p>
<p>Right now, I am just feeling uncertain about the situation. I am going to run some of these accommodations by my daughter, and of course, it is she who will decide.</p>
<p>Compmom, you mentioned the school not wanting to provide a notetaker for your daughter. Could they get someone to record lectures instead? It just occurred to me as one of my friends records all lectures on her iPod so she can listen to them as she's studying for tests.</p>
<p>Best of luck, I can only imagine how frustrating this situation must be for you and your daughter.</p>
<p>Compmom, regarding a notetaker, someone to bring her meals and check on her in the dorm...all of the accomodations and assistance provided by the other school that does such a good job: I wonder if it would be possible to appeal to a student group that does service projects? After all many students who attend schools like your D's have a strong history of service, and continue to participate in such projects during college. Having a crew of helpers available and ready to step in when she needs it might ease the situation considerably.</p>
<p>I must say, your D sounds like a hero to me. I feel that if the school admitted her, knowing her health issues, that they have a responsibility to cut through some of this bureaucracy--which will cost them nothing!--and help her succeed.</p>
<p>Livescribe</a> :: Never Miss A Word</p>
<p>This maybe an option. My daughters roommate has handwriting issues, she has someone in her classes use the notebooks that go with this pen, it records the lectures as they are writing the notes, hooks up to your computer and you have the entire lecture along with the notes taken at the same time. D said it is a God send for her roommate. She said all the other kids are relistening to entire lectures after class. Not too pricey, the notebooks aren't either.</p>
<p>My son has chronic health concerns with flareups that inevitably affect his work. I can say that his school (Brown University) has been helpful and accommodating so far. We met with them BEFORE he accepted to see how they would respond to his potential medical problems and were suprised at all the helpful suggestions made to us. We were especially concerned about the possibility of missed classes - which HAS happened but so far,it hasn't been a problem (except in one course which my son opted to drop. I believe the prof may have made concessions but it never got to that point).</p>
<p>I haven't really been involved since my son prefers to handle things himself, but I did call the dean this year while my son was hospitalized just to let the school know what was happening. When my son returned to classes, his professors had already been told of the situation and they responded appropriately (offering extensions). I'm not sure how Brown would approach dropping down to 2 classes but that would be a problem for us - health insurance won't cover him unless he's full time - not sure about his FA. I know my daughter had to take an incomplete (in a studio course) to maintain full time status and her FA when she had mono (her other teaches granted extensions). My son had to drop down to 3 classes one semester and luckily at Brown, that is considered full time. If he needed to drop to 2, I would suggest he ask for an incomplete in the 3rd or even 4th class - making up the work over the summer. Check into the credit requirements to stay on track for academic progress. My son needs to take the full 4 courses this semester to say on the normal track - although I suspect that accomodations MAY be available if he's medically unable to do so. Could your daughter routinely register for the full load, and then take incompletes if necessary to stay on track? So really she'd take 2, maybe 3 classes per term, and make up the incompletes over the summer. Not a fun way to do it, since she wouldn't have "breaks" but it could keep her moving along at a pace she could handle physically. Perhaps if she had her department chairman on her side, the school would go along with a plan like that.</p>
<p>We have been in situations before where we had to fight for every little accommodation but it seems the Brown Disability Office is definitely there to help with classroom, dorm and even cafeteria issues. At least, that's been our experience so far.</p>
<p>Well, I can relate. I just had to withdraw my last semester of college because of chronic health concerns. I'm really, really angry at myself. I hate being so inactive. </p>
<p>The problem is, when do I accept this as permanent? How do you let your ego adjust to your reduced performance? Do you just try your hardest knowing it's only 10% of what you could do normally?</p>
<p>In any case, I feel for your daughter. I really respect her determination.</p>
<p>Samiamy, Livescribe looks interesting. Very interesting, and I am going to look into it.</p>
<p>Thanks all for the ideas: recording may be possible; I think it is okay if the professor gives permission.</p>
<p>We also talked with the disabilities office before she accepted (in April) and then our daughter met with them over the summer, and again in the fall. So we did start early! She has done everything herself also, although, when she is very ill, I have talked with the dean. Any ideas here will get communicated to her, and she will carry them out, if she thinks it is a good idea.</p>
<p>The problem of staying on track and graduating in the required number of semesters is a big issue. Right now, she can graduate in 5 years, which means one year of full load and 3 years of 3 courses/semester. I don't know if the college has this accommodation for illness, but they do have a 5 year BA for musicians, to give them time to work on music. so I think she can apply for that. (Ironically, she has originally applied for a program that gives you a bachelor's and masters in 5 years) But I don't know what happens if it goes over 5!</p>
<p>My son is at Brown, and I am not surprised that things have gone well there. </p>
<p>Our health insurance is okay with a break, or reduced classes, but because our son is at Brown for his last year, our daughter had great financial aid. So this will end up costing money, but so be it I guess. Keeping health insurance would be a major concern, jerzgrlmom, and that must add some pressure.</p>
<p>An incomplete that allows making things up over the summer would never have occurred to us. Does Brown let the student just learn on his own, do papers and tests and exams on his own, etc.? Does he do the same assignments? How does this work? This certainly would be the best way to go right now, but I can't see how it could work without a lot of involvement by the professors. This is probably the most important idea right now, and would love to know more (Her meeting w/the college is tomorrow!)</p>
<p>Wutangfinancial, I feel for you! You sound so much like my daughter, being angry at yourself! It is painful to hear that you (and she) feel guilty or frustrated with yourself, when you have to fight so hard to just do what other people can do naturally. Please go easy on yourself and know that you are respected for your perseverance, and deserve the break.</p>
<p>Performing at 10% of the level you would normally do, is exactly the point, and exactly why my daughter thinks leaving is a good idea, now that she has dealt with the grief for a couple of days. She is not performing up to standards that she has for herself, and is not enjoying the learning the way she would like and the way she could, because it is such a struggle. For her, the accommodations issue may not be the thing right now, it is how she feels about herself, and the way she is functioning academically. She loves her classes, and does not want to just make it through- she wants to inhale the subjects!</p>
<p>Our daughter has gone through all the right steps to advocate for herself, as I have described, but I do think deep down she does feel funny about professors spending a lot of time helping her (hypothetically, although all 3 have offered) and about not getting work in on time (again, if they give her a week, she will say no, I only need 3 days), and generally about being accommodated over a longer period of time. Once she ended up in the ER a second time in a week, with meds that put her out for another day (so 4 days out in a week) I think it was getting past her comfort zone in terms of what she perceives as asking for special attention- okay for one time, two times, three times in a semester, but not more. </p>
<p>If it is sort of done for each episode, without a good plan from the disabilities office, it may feel like personal favors rather than a procedure that is official. I have back problems and can't life laundry. It works better if my husband carries it down each day, without my asking, because I absolutely hate it when her forgets, and I have to ask him every day. So, it is like that. Being a supplicant is uncomfortable.</p>
<p>That is why, emotionally, it needs to be a plan, from the start, (as we tried w/some skill to set up, but did not get)and she needs someone at the disabilities office who gets it, who is sort of warm and firm about what she deserves, and very actively informative about ideas for accommodations. There was a dean with epilepsy who totally got how our daughter felt, but is now on leave. She was great, and would say "You have my permission to rest, I forbid you from going to class (joke) and I will let all your professors know that you are having a serious medical problem and need a day off." That worked really well to put our daughter at ease. But that is unusual.</p>
<p>Wutang, does this ring a bell? You sound like someone who is also proud of being sort of self-sustaining. It may be because she had had health conditions since the age of 3, and so far has resisted illness as an identity. She really does want to be "normal" in her expectations of herself and this crisis may raise a lot of issues that will be constructive to deal with. As you say, how much can you accept?</p>
<p>I think we both subconsciously had a fairy tale in our head, that after putting out the last fire (surgery for endometriosis) things would finally be well. There are a lot of people who have health problems in childhood and adolescence, who get better in their late teens or twenties. The insulin-dependent diabetes will always be there, but in September, we both expected a great year health-wise.</p>
<p>Wutang, what are your plans? I hope that you have a break that is restorative in some way, and that you forgive yourself- more than that, give yourself a pat on the back. I hope you find a way to go back, and to function at a level where you can feel good. Thanks for writing here!</p>
<p>Again, jerzgrlmom, if you can, let me know about the summer time work on incompletes! Thank you...</p>
<p>I have just gone through all of the posts in this thread, which are so insightful, and added all of your ideas to the accommodations we had already listed. I have also e-mailed the dean about some of the policy questions. Our daughter meets with the disabilities office folks tomorrow. </p>
<p>Thank you all so much. It is hard to go "public" like this but it has really, really been helpful and we appreciate your help so much.</p>
<p>I have no suggestion or advice for you. I just want to say your daughter is very lucky to have you, to be her champion. I am sure she couldn't have accomplished so much without you standing by her side. You must also be very proud of her. With all the stress and worry over your daughter, don't forget to take care of yourself.</p>
<p>I work at an elementary school that is known to offer lots of good services and accomodations to special ed students. Just this week, we did state testing so it was on my mind a lot as I was keeping up with this thread. Our kids leave us after grade 5 and I often think about what they will face in their future. I have learned a lot from your story. All the best to your daughter.</p>
<p>Compmom, jumping in late, but wanted to add one little detail. The note-taking service offered to my daughter is one that the college makes available to anyone registered with the disabilities office. Their way of handling it is generally anonymous, e.g. if the person with a disability is in Class A, they send out an e-mail to the professor/students in Class A, asking for volunteers to provide their notes. Once a volunteer is selected, all they have to do is take their notes to the copy center each week, where they are copied for free, and left for the student with the disability. If a student provides notes for the entire quarter, they are paid $60 for their service. Ironically, my daughter has provided this service for several quarters herself and is now on the receiving end.</p>
<p>Compmom, I pm'd you. But in general, my son hasn't had to take Incompletes yet at Brown but he had to drop to 3 classes one semester. My daughter at RIT has taken Incompletes due to medical issues but mostly in classes where she had to complete a large design project, an art project and a journal writing/website about her study abroad program - which she did at home over the summer. I'm not sure how professors would handle making up exams from home. Papers would be easy to do over the summer and could be emailed. Perhaps the professor would replace tests with papers or the student would be required to take the exam(s) upon arrival back at college? Some schools offer classes online, so perhaps there are online exams at your daughter's school? These would be questions to ask to see what options are available.</p>
<p>As for notetaking, my daughter's school offers this service free to students. Those providing the notes get paid (work-study jobs) to go to class, take notes, make copies and deliver them to the dept. My DD has been a notetaker numerous times. The professor usually emails top students before class begins to ask if they are interested in the job. It's easy work for an organized student and gives the notetaker a reason to never miss class.</p>
<p>Found out yesterday that my daughter's school does not offer incompletes for undergraduates. Extensions equal to time missed for illness, are available. </p>
<p>The anonymous method for getting notes sounds wonderful. I will suggest it to her college's disabilities office. (!) I am actually going to print that out and bring it to them.</p>
<p>Our daughter meets with the disabilities office folks today, and has a list of things to make the fall go better. We have no confidence that they will make good use of her info, or info from MD's, and, if necessary, will go higher up. But our daughter is giving them this chance, now that it is clear how severe her problems can be.</p>
<p>She is also meeting with the dean- I hope and assume- to get started on the red tape involved in taking a medical leave. We also have to talk to financial aid, and she is going to find out if she is still assured housing with her friends. </p>
<p>Thanks everyone. I am ultimately proud of my daughter. She has standards for herself, and likes to meet them. She does not want to hobble along from episode to episode, catching up frantically in between, always afraid another one is coming. She loves her classes and wants to enjoy them.</p>
<p>That said, with her personality, it is all the more important to have a good plan in place, so that she does not feel like a whiner, or a supplicant. If she doesn't get what she needs, this time, her parents will go to someone with some authority to address the situation.</p>
<p>Reading about what is offered at other schools is enormously helpful, and we wish you and your kids all good luck in dealing with whatever struggles you all have. Thank you!</p>
<p>FWIW, "incompletes" at my daughter's college are actually called "IPs" for "interrupted progress." Students must complete all work by the third week of the next quarter. I think this is one of the advantages of the quarter system, in that with three 10-week terms, no one is sliding too far behind. Her college is switching over to a semester system in the fall of 2010, and it will be interesting to see if this effects their approach to IPs; my daughter will have graduated by then, so my interest will, fortunately, be purely academic at that point.</p>
<p>I talked with OCR in Boston last week. Just to add that this morning, OCR in D.C. called me back (I had left a message) and confirmed that there are not a lot of accommodations that are required by law for chronic illness, and that we are, in fact, somewhat dependent on good will and intentions. However, she added, most people do end up with accommodations that they need, in a process of interaction with the school.</p>
<p>I have read all the language, and "equal access" with its more subtle nuances, for chronic but invisible illness, can conflict with ideas of "undue administrative burden" or "changes in the essential academic standards" etc. There are not direct quotes and may not be the exact wording (I am too lazy to go look it up again) but that is the idea.</p>
<p>In public elementary, middle and high schools we used logic to trailblaze in pursuit of equal access, especially, at first, for diabetes. The school had to hire another nurse who would be free to go to the classrooms (there were 2 kids with diabetes in one grade) so that the kids would not have to leave the classroom and miss out on educational time. The new (1994) guidelines for tight control, which meant a lot more blood tests and shots, changed the duties of school nurses. We came to that logically, as I said, and a few years later, the school nursing manuals and policy books began to reflect that. However, we cannot do quite the same advocacy in college- that is clear.</p>
<p>But I do believe that now that more kids with health problems are getting through the public schools, with accommodations, and are heading to college, things will evolve and change in a similar way, for the better, and I hope that we can contribute constructively to that, as you are all doing too!</p>
<p>Compmom, I've been thinking about you and your daughter. Any more news since her meeting with the disability folks?</p>
<p>I'm bringing my own daughter home for spring break today; a much-needed break after a truly miserable quarter. I'm hoping she can regroup, rest, and with luck, get some more effective meds now that her RA has come out of remission.</p>
<p>My daughter sent me news she received from her disability office this week, and they continue to impress me. She is being offered priority registration for next year (at her school, students register for all three quarters of next year in the spring of this year). Their rationale is that students with disabilities should be able to choose a schedule which best fits their health needs, e.g. if a student knows their energy flags late in the day, they can choose course sections earlier in the day. The students still have to meet the same grad/major requirements, but priority registration gives them additional flexibility. It doesn't make much difference to my daughter at this point, since as a rising senior, she practically has priority anyway, but at least she'll be able to have first pick when it comes to filling her last PE requirement...Pilates is much preferred to say, basketball!</p>
<p>In addition, they have notified my daughter of a seminar they're holding next quarter. It will address post-college disability issues...how much do you need to tell an employer, what sort of accomodations are legally required by employers, that sort of thing. I'm quite impressed that they reach out to the students with this sort of information. Now if we could only figure out how our daughter is going to get, much less afford, insurance once she's off our plan!</p>
<p>compmom, I didn't know that Congress made significant changes to the ADA in what is called the ADA Amendments Act, which took effect on 1/1/09. The changes may be relevant. Here are a couple of links.</p>
<p>ADAA</a> Becomes Law, Strengthens 405 & ADA - Paulding.com</p>
<p>In particular, look at this, which was prepared by a college and shows that the language clearly includes an episodic physical impairment:</p>
<p>Of course, the definition of reasonable accommodation may not be obvious, but I think the new law gives more leverage than the old one. I'm going to read it when I have a long plane flight.</p>