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HImom
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Posted: Tue Mar 21st, 2006 03:15 am |
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There are many other invisible chronic illness & conditions, including diabetes, arthritis, chronic fatigue syndrome, fibromyalgia, chronic lyme disease, dysgraphia, dyslexia, and so many others.
Just wondering how folks are dealing with this with their college or soon-to-be college kids. Once they turn 18, I know HIPPA makes it tougher for us to get & share medical info & some have problems staying on insurance policies unless declared disabled dependents.
Have read of folks weighing pros & cons of requesting a medical single or other dorm arrangements as well. Would welcome any thoughts, comments, experience with all of this. I also know that some teachers severely penalize absences, even if due to medical reasons & believe that could be very difficult. I know kids have to increasingly be their own advocates, but welcome insights from those who have been there, done that. What worked well? What do you wish you could have changed/done better? Suggestions for "newbies" to college?
HImom
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Mezzomom
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Posted: Tue Mar 21st, 2006 04:44 pm |
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My daughter has rheumatoid arthritis, and checking out the proximity/availability of medical facilities was always a priority with me. My daughter was less interested until this winter; she's had a rough winter and the importance of a nearby rheumatologist started sinking in with her.
We've talked about HIPPA, and she has indicated that she will waive her privacy rights so that, if necessary, I can help her with any medical decisions. We had also talked theoretically about requesting a first-floor dorm room for her, but she's currently uncertain if she's going to do that. The school which she is likely to attend gives honors students the option of living in the honors dorm; unfortunately, the women will be housed on the third and fourth floors of the dorm. If she ends up at this school, she'll probably deal with the stairs rather than opt out of honors housing.
As a music major at this same school, she is required to demonstrate piano proficiency. She tested into the second level, so will have two quarters of piano. She brought up her concerns about this at her audition, and the department chair and piano professor met with her privately about this. They are both very willing to work with her, and if her progress lags because of a flare, they've agreed to give her extra time to complete the proficiency requirement. The actual nuts and bolts haven't been worked out (and we're hoping it won't be necessary), but my daughter feels very comfortable with their assurances that it can be worked out.
These are the issues we've been able to anticipate, and after reviewing the disabilities services at all the schools to which she applied, we're reasonably comfortable with the procedures/accomodations already available, if requested. Whether the reality corresponds with what's on paper is yet to be determined, but I'm optimistic!
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HImom
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Posted: Tue Mar 21st, 2006 05:18 pm |
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Our son is 18 already, so technically, he needs to waive for me to get any of his info. As a practical matter, I have been guiding all his medical & health issues & none of his docs have asked him to sign a waiver. I have read that others whose kids have medical issues get a waiver signed when their kids go off to college or they can't share med info when their kids are having medical issues. We will have to deal with this, because he will likely attend a college that is thousands of miles from HI (not even applying to any in HI).
So far, we are still waiting to see which schools accept him, so we haven't seriously thought about dorming options yet. He's very sensitive to noise & has difficulty sleeping, so living in a quiet environment would be very important to him, which would likely be the honors dorm (I've heard they're generally quieter).
Folks with his condition are split between sharing a room & getting a medical single or single in a suite. Not quite sure how we'll go on this issue either & suspect it will depend on which school he finally ends up at. We had hoped he would somehow "grow out" of his conditions, but this 3rd quarter of senior year has been really tough, with him home more than in school.
Last edited on Wed Mar 22nd, 2006 03:44 pm by HImom
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sweetkidsmom
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Posted: Wed Mar 22nd, 2006 04:02 pm |
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Last edited on Fri Mar 16th, 2007 10:01 pm by sweetkidsmom
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HImom
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Posted: Wed Mar 22nd, 2006 04:20 pm |
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Thanks & good luck. Would love to read more about your experiences, as I really love SCU. We're still waiting to hear from the other 6 schools son applied to, but it's useful to know good info that can be used elsewhere. I have no idea how son will fare with the schools who have not yet sent letters.
My kids are "funny" in that they minmize/deny having ANY health conditions & don't see any need to confer with disability office or anywhere else. <sigh> Actually, I take that back, they realize & admit they do have health conditions which make them miss school but deny it affects them academically or in any other way.
They don't think it's unusual to miss 8-23+ days in a quarter (of only45 days) & don't think schools would be concerned about that as long as they keep up, as son has always done. Oh well, I will continue gathering info & doing what I need to do & we will see how everything works out. I have unfortuantely read that each instructor (rather than the school) has the right to determine attendance policy & how they will allow absences to affect the child's grades, which will be a HUGE issue for my S, as it has been for other kids with similar health conditions.
Last edited on Wed Mar 22nd, 2006 04:22 pm by HImom
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Mom60
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Posted: Wed Mar 22nd, 2006 05:56 pm |
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In hindsight I wish we had prepared more and pushed her to be more proactive. And when she wasn't I wish I had pushed her more to take better care of herself. I think if she had she would probably still be away at school and not back at home.
Do as much of the research and line up referrals as soon as your child knows where he or she is going. Make those calls right away. Once summer comes it becomes harder to reach people. Also have alternative provider's lined up in case your child doesn't click with the first. Also have your present care provider call and give the new provider any info that would help them treat your child. Also discuss with the provider how they do billing. Also if possible schedule an appointment when you first arrive so that the first time you see them it isn't in an emergency.
Also when considering a provider and a school take into consideration how your child is going to be able to get to the appointment. This was one of the biggest stress points for my child. Being in a new enviroment and having to make your way around without a car when you need to see someone. It is one thing to take 2 buses when you are feeling healthy quite another when you are ill. Also most health center pharmacies only carry a limited number of drugs. If your child needs something out of their inventory how do they go about getting it. My child ended up going several days without meds since she had to walk about a mile each way to the pharmacy. Find out ahead of time which pharmacy in the area delivers.
Regarding missing class. She had one really sick period where she had a note from the hospital and health center for her professors. Out of 5 professors only 2 seemed to care that she had missed class and inquired as to how she was doing. The other 3 didn't seem to even acknowledge that she was out. What I did find is that my child put an unhealthy amount of pressure on herself to get back to class before she was ready.
Also remind your child that if they do have any hospitalizations they should put down the home address. We had the hardest time getting the bills once she was back home.
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HImom
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Posted: Wed Mar 22nd, 2006 06:24 pm |
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| Thanks for these good points--they're very helpful & we'll keep them in mind as we continue waiting to find out where son will go to college.
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sweetkidsmom
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Posted: Wed Mar 22nd, 2006 09:16 pm |
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Last edited on Fri Mar 16th, 2007 10:02 pm by sweetkidsmom
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sweetkidsmom
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Posted: Wed Mar 22nd, 2006 09:16 pm |
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Last edited on Fri Mar 16th, 2007 10:02 pm by sweetkidsmom
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HImom
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Posted: Thu Mar 23rd, 2006 03:13 am |
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Sorry to say, each professor/instructor gets to individually determine the attendance policy for each class. If a student misses too many classes, the instructor has the right to require the student to withdraw or get an imcomplete. Santa Clara policy is that generally missing two weeks of classes (4 classes in a TuTh class or 6 in a MWF class) is grounds for requiring withdrawal of the student
It makes me very sad, because my son generally misses more than 2 weeks of classes in a quarter. Hopefully things may improve when he's in college, but we can't honestly count on it, especially with the added stress of adjusting to a new place, new people, new school. The woman I spoke to was very nice, but I was very discouraged.
Arizona State U on the other hand said that while each instructor can make its own poicy regarding attendance, generally the most that happens is the student may be given an incomplete & additional time to make up class if there are medically caused absences. They also have on-line classes as another way students can earn credits & take courses--didn't ask but don't suspect SCU does. May make son apply tu UAz as another back-up due to these disability/absence issues. <sigh>
I've read elsewhere that at nearly all Us, each instructor is allowed to set attendance policy (& penalties for absences). <sigh> That's the main accommodation my son needs & has always been able to get to succeed in his highly competitive HS--forgiveness of absences as long as he gets his work done & learns the material.
I guess I'm now on the lookout for which schools are forgiving of absences in students & how they handle it.
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HImom
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Posted: Thu Mar 30th, 2006 08:22 pm |
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Another school son is considering is University of Southern California. The fellow in the engineering department I spoke with today says that he is sure they will work with our son to make USC work for him & will not punish him & make him withdraw due to health-related absences.
We will attend their open house/reception this Saturday in Honolulu & learn more. They will have lots of folks from their school present, including the dean of engineering. It was a very positive conversation. I'm especially happy they're willing to offer son 1/2 tuition scholarship as a NMF.
HImom
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sweetkidsmom
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Posted: Fri Mar 31st, 2006 04:44 am |
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Last edited on Fri Mar 16th, 2007 10:01 pm by sweetkidsmom
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HImom
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Posted: Fri Mar 31st, 2006 05:25 am |
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Thanks, Sweetkidsmom! It did feel good to be talking with folks who promised to work with us. After speaking with them, I called a friend whose son just graduated from USC in bio or chem & is now in his 1st year of med school at UH. She confirmed that they worked with her family & her son all thru the time he spent at USC & they were VERY happy with USC. He had mono & also had to miss school for eye surgery but they never threatened to kick him out of school or anything. He also got to know many faculty members pretty well & even ate with them from time to time.
I'm still going to try to talk with Santa Clara one more time, but am a bit wary at this point. Haven't heard whether he's gotten into his last 3 schools yet either. Will see how it all works out.
Went the USC's HI admitted student's reception. Son was disappointed--mostly PR & no food. I was happy because they reiterated that son has until 4/19 to delcare USC his 1st choice & he'll get 1/2 tuition scholarship from them. Also spoke with the assistant dean of the School of Engineering. She was VERY nice & said the school would work with S & his health issues & he would NOT be asked to leave if he has health-related absences.
He saw several friends & peers at the reception. I offered to let him fly out to USC to see it, but he says no need, he'd rather save the money. <grin> It's OK with me. If he gets into Rice, we may have to visit because none of us have ever seen it. Looks like he has absolutely no interest in ASU & USC is getting higher & higher on his list.
Last edited on Sun Apr 2nd, 2006 01:39 am by HImom
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HImom
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Posted: Fri Mar 31st, 2006 05:25 am |
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whoops--sorry I pressed send twice & don't know how to delete this post. 
Last edited on Fri Mar 31st, 2006 05:27 am by HImom
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millefleurs
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Posted: Tue Apr 4th, 2006 09:54 pm |
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I don't know if it would be as helpful to a young person as to an adult, but "Livinng Well with a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life" by Stacy Taylor, M.S.W., L.C.S.W. is one of the more helpful books on my shelf for dealing with an invisible health issue.
The resources section seems to be mostly national organizations and I don't know how helpful they would be in terms referrals, but since the book is written by someone who is both a counselor by profession and the sufferer of a hidden disability, its "street cred" is higher than some of the other publications I've seen for people dealing with invisible chronic illness/disability.
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HImom
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Posted: Tue Apr 4th, 2006 10:03 pm |
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| Thanks for the reference. I'll see if our local bookstore has it (or perhaps the library). It looks like a good read. My son is still very reluctant to admit there's ANYTHING at all different about him, so he suffers very silently (except at home, of course where he lapses into grumpiness).
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Lynda
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Posted: Wed Apr 5th, 2006 12:04 am |
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Dear HImom,
I really liked the USC Health center when I was there years ago. My friend has a daughter who graduated in 04 and she also found them to be a great group. I would feel confident about the medical care that might be needed in an emergency. Looks like you son decided to be a Trojan, Congratulations.
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HImom
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Posted: Wed Apr 5th, 2006 12:08 am |
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Thanks! My friend's son who just graduated from USC & is in his 1st year at UH med school worked at the student health center the whole time he was at USC & thought it was pretty decently run. He had nothing but good things to tell my son last night when they chatted & is a huge Trojan fan for life now.
The Disabilities Office & School of Engineering seemed pretty educated about CFS & invisible conditions, which was reassuring. Now, we're trying to figure out housing & pros & cons of marching band on top of his engineering (yep, that's what my son is now considering). Life is never boring! It might be OK, since he's entering with 32 credits (the maximum) from all his AP courses--he could take a light fall load.
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sweetkidsmom
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Posted: Wed Apr 5th, 2006 03:03 am |
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Last edited on Fri Mar 16th, 2007 10:00 pm by sweetkidsmom
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HImom
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Posted: Wed Apr 5th, 2006 05:36 am |
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| We're pretty nervous too, especially when son misses school & we wonder how much school he'll miss in college when we're not around. Hopefully he can schedule his classes so they don't start too early so he can manage everything better. We will just have to wait & see how everything turns out, keeping our fingers crossed. Some folks do better in college with their chronic health issues than in prior years, I suspect partly because they have more control over their class scheduling. Hope that holds true for all of us & our kiddos.
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