<p>Wow, thanks everyone.</p>
<p>Mezzomom, I copied and pasted your daughter's accommodations- it sounds like her school did a great job. These are great accommodations (that also honor her independence, because they do not rely on you, as I noticed someone actually checked in with her, and brought her food, things which I am currently doing. I don't mind, but it would establish a better feeling and connection if the school did some of that). Notes being provided and even brought to her would be so helpful, and we have asked, but no success. Also, the scribe or software would help when she cannot use her right arm, which is happening for a week every few months: we did ask for a "notetaker," again, no success.</p>
<p>Shawbridge, your advice also very helpful, and yes, we do try to start off "constructive."</p>
<p>I can see clearly that there are some problems with our daughter's school's approach to disabilities/illness, either it is too fragmented in its structure, or because in some deep way they don't "get" it, despite the superficial appearance of wanting to accommodate.</p>
<p>We thought we had gotten way ahead of any potential problems. Not only did we provide multiple letters from MD's, a year ago,but my daughter and I wrote the letters to be signed, with lists of possible accommodations that we thought were both reasonable and thorough. Also, my daughter has met with the disabilities office twice. From all of that work, the outcome was a letter to professors that she should be able to eat snacks in class (which she does not need to do, and we did not request), and information on how to clear a postponement for exams (which means a make up two months later!).</p>
<p>When we asked (nicely of course) about the lack of accommodations, despite my daughter's work, we were told that the deans handled a lot of this, and also that my daughter would have to work things out with each professor, for each episode. This is cumbersome and has increased stress. Many days she is too sick to do all this, and so there are delays in getting work she needs, or even in getting permission to miss class, so she feels insecure until she is well enough to talk to a prof. The dean does e-mail them, but the last time, our daughter was told to take care of it herself- the day after 9 hours in the ER, still groggy from treatment.</p>
<p>There was a good dean who "understood," but she is, herself, on medical leave right now, so some of the problem is also from that changeover. That happened in January.</p>
<p>I think the deficiencies caught us unawares when things got bad, in December. We have been doing this for 15 years and are very experienced, establish strategies for "worst case scenarios" in advance, try to come at things with positive, cooperative attitudes, and know how to get tough when needed. But starting fresh at the college level, we were hampered by uncertainty as to what colleges do, in fact, have to do, and fear that they would make her leave if her requirements were too cumbersome. We have heard from another family that that is what students like this face, and there is an implied threat that if the leave is involuntary, it will go on the record. We would not let this deter us, but we thought that they actually could do that, and so my daughter was almost afraid to push things, and was more intent on proving she "could do it."</p>
<p>The other problem is the very obvious preference for dealing with my daughter only. In the fall, I and my daughter also were trying to arrange things so she would have as much autonomy as possible with her health care. (This is an issue someone like Brooke and her mom did not have to deal with in the same way: invisible disabilities can bring prejudice, and also I think for my daughter, emotionally, the more she connects with others besides her mom, to get her needs taken care of, the better for her- even though for me it would be easier to do everything!).</p>
<p>But while my daughter is ill, taking care of the RX's, referrals, appointments, remembering meds, advocating with professors and dean, calling doctors and coordinating them, is way too difficult. She still has all the diabetes care to do, too. It is hard for an 18 year-old short on time due to conflict between illness and work, to make the multiple, insistent calls needed to secure help. So now I am stepping in more aggressively. I was doing some of that, for her, but only w/her direction. I also have been there with her, and talk to her overnight, and drive in nearly daily with food and comfort, but a couple of weeks ago I also asked if she would be willing to e-mail the dean and all doctors to allow them to talk to me. This has helped, but I am still being careful to defer to my daughter's wishes and not intrude upon her independence. It is a balance.</p>
<p>We got a very confusing e-mail from the dean, which said that permission to drop to 2 classes was rare, and that the idea was that if you were too sick to take 3, then you would be too sick to take 2, and also would not benefit fully from the experience academically or emotionally or socially or whatever,</p>
<p>Then the dean said that permission to take 2 would not be granted for a condition that waxed and waned, meaning it would not be granted for someone who could foresee taking a full courseload in the next semester. But would be granted for someone with a chronic situation, such as a student doing chemotherapy. The inconsistencies and illogic in this statement are mind-boggling.</p>
<p>Strawbridge, I will pm you if I can figure out how, or pm me. Maybe we can change things a little so it will be easier for your son!</p>
<p>We looked into these things before my daughter accepted, and she also looked into things before applying. This school gave the impression it was very enlightened.</p>