<p>I am a long time lurker and first time poster. My DD is heading off to college this fall and yesterday was got a first look at her future dorm room. We have some problems.</p>
<p>My daughter is seventeen and has muscular dystrophy, FSH type, which means it mostly causes problems with her face, shoulders, and upper arms. She cannot raise her arms above chest level. We have not chosen to let her school know because there was no need. She has never had any accomodations before. She managed to squeak through PE requirements in high school by choosing classes that she could manage.</p>
<p>So now the dorm room. It's set up for very tall occupants. The dorm is very old. The closet rod is so high I (her mom) would have to stretch to put a hanger over the bar. I'm trying to figure out all the ways that we can modify things so she can reach them. An over the door towel rack will be needed but he door is so tall that the rack will still be out of reach. The beds are bunked and she cannot get on top. Her room mate will have to be on top, like it or not. I'm sure there will be other things that crop up as the year goes on. Should we discuss this with the disabilities services people? My DD has been very reluctant to disclose this and I have stayed out of the process as much as possible. I'm afraid that something will come up suddenly and everyone will ask her why this is not in her file somewhere.</p>
<p>I guess that is really my question: At what point does she disclose this and should I continue to stay out of it?</p>
<p>I'd tell her she needs to call her college's office of Res Life ASAP and explain the problem. The college can't resolve her issue if they don't know about it. She's not asking to be coddled, just to have a living situation that is reasonably manageable for her. No reason to "hide" the disability at this point - no reason for embarassment, and she's been admitted on her own merits. </p>
<p>I think the college will probably say, "Why didn't you tell us about this when you filled out your housing forms?" but they'll do what they need to in order to accomodate her needs.</p>
<p>But it's time for your daughter to explain her needs to the college so they can meet them. Better now than in the middle of/after moving in to the dorm!</p>
<p>I think that some thought needs to be given to the roommate and to the residential life and advisors, etc., who are now going to be living with (roommate), and responsible for (RA, RL) your daughter. She has some physical limitations, even if they are mild, and people need to know what they are. This seems to be an issue of safety for your daughter -- It is possible that new issues will arise in a new physical environmnet -- and a legal issue for the college. I understand and respect her/your hesitations, but in my opinion now's the time to let them know. If it's already an issue having seen the dorm room, it's going to be an issue in other ways, too, most likely. Wouldn't this be disclosed in some detail in her medical and health forms? And it's certainly going to be disclosed when she gets there, so why not take care of it now?</p>
<p>I agree that you D should call & talk to the res life folks (or email, if that is more comfortable for her). There is no need for her to hide her MD, and she should not feel embarrassed about asking for simple accomodations. She isn't asking for much, after all ... I'll bet there have been kids already who have requested stuff they don't even <em>need</em>!</p>
<p>What about those grab things, with like the claw thing at the end, to reach the higher shelves, etc.</p>
<p>I would tell them, and say exactly what you said here. There may be things they can do to help, or allow furniture to be switched out. </p>
<p>If she doesn't want to explain all the details to her roommate, she can just say she has a "muscle" problem from an accident and can't stretch her arms very far and needs the bottom bunk, and maybe some help with reaching high stuff.</p>
<p>the container store has the BEST thing in the world, its a clothes rod that hangs off the regular rod and is totally adjustable for height and width. </p>
<p>there are also wall hooks that just stick to the wall (not breaking any college rules) that she can put on the on the side of the closet or any walls...these have been invaluable for my D, who is just 5 feet tall</p>
<p>can she step up onto a step stool, like stairs, search around and there are some that have storage in part of it and can also be used as seating</p>
<p>these are just some things that would fit naturally in a room with drawing any "flags" but also really could help</p>
<p>Here is another idea, if the roommate is amienable, see if you can "split" the closets. Order two of the closet rod extenders, and see if roommate would use the top of both and your D could use the bottom.</p>
<p>I think Lafalum84 and Heron are right - the college and roommate need to know some minimal set of facts at least. You know, this isn't the end of issues she'll face. Will she skip chemistry classes because reagents are stored above shoulder height? Botany because leaves aren't always conveniently low? Law because some books are stored on high shelves? It's terrific that your D wants to be appreciated for the things she can do. But coming to grips with what one can't do is part of being an adult.</p>
<p>When my daughters were in elementary school we had a device that looked like a closet rod but attached to the closet rod using long (maybe 24 inches) hooks. Now they were able to reach their skirts and dresses. I live in a small town without a lot of shopping choices. I probably purchased it from kmart. I'm sure a Bed Bath and Beyond or a Home Depot kind of place would sell them too. Could she take a small step stool to help?</p>
<p>I guess that I'm of the mind to give the school or their health clinic a heads up, while noting that she is so far doing fine on her own. Mostly because I am a "glass is half empty" type of person, I wouldn't want the condition to confuse things should she come down with flu and they are trying to figure what she has.</p>
<p>What are the emergency exits like for her dorms and major academic buildings? Is it open a door and down a flight of stairs or is it open a window, hoist yourself out and down the fire escape? Again, I tend to see disasters where none exist!</p>
<p>Does she plan to tell her room mate?</p>
<p>She has a lot of determination and courage. I bet you are very proud of her.</p>
<p>For most things, she can just say, I can't reach that, can you help? I can understand they feelings of not wanting to go into a dorm and wanting everyone to know my personal physical business when I first walk in the door.</p>
<p>Housing and the RA should be aware, and the roommate can be clued in to some degree, but if the young lady doesn't want tell her floor mates she has MS right away, I think that is fair enough. If her symptoms get worse, she can share then.</p>
<p>its not about not dealing with it, its about deciding when and how to share some very personal information with strangers. I think that is fair. But again, housing should know as well as the school clinic. It would be handled with discretion in both cases, i am sure.</p>
<p>You need to call the school, let them know the situation, and explain your needs. I'm sure they'll be more than happy to help, but they can't help if they don't know.</p>
<p>I feel you're ethically obligated to notify the school. You're entrusting your daughter to their care- would you leave her with a babysitter without telling them? If something were to happen that injured her as a result of her condition, the school would be open to liabilities that they could have avoided if you'd notified them.</p>
<p>I think you (or she, if she prefers) should talk to the school's residential life department. Especially since, at 17, she is not yet legally an adult. It would be so much better if she could be in a room that does not have bunk beds, for example.</p>
<p>Good luck. I think you will be able to work things out so she can do what she needs to do to live in the dorm. It sounds like she does not need very many accommodations.</p>
<p>Thanks for the advise. I have checked out the school's disability services page and I understand DD's reluctance to get into it with them. They want a letter from an MD stating exactly what the problem is, how if effects her, and what she needs in her dorm, her classroom, on campus, etc. She doesn't see any reason to do it because there is not anything she specifically needs. Bunk beds are fine as long as she is on bottom. We can manage things in her closet. She has not been able to reach for things or get heavy things from shelves in years and is pretty comfortable asking for someone else to pour from a heavy bottle in chemistry (for example). </p>
<p>I agree the school needs a heads up but she doesn't want them to have a preconceived idea of who and what she is before they meet her. I can see that a room mate will have a different concept of her if she arrives knowing there is something wrong as opposed to slowly coming to realize that DD doesn't fully use her arms. </p>
<p>I try very hard not to be a helicopter parent. The compromise we've reached is that the school does need to know but they can wait a couple of weeks. If anyone sees a real problem with that please let me know. I would prefer that things go smoothly and would like to get this right.</p>
<p>The problem I envision is when she tells her room mate that she <em>must</em> have the bottom bunk--and moreover can't agree to trade off part way through the year or toss a coin for it--but doesn't tell the room mate why. She may appear controlling and selfish, which she very obviously is not.</p>
<p>I think that she has to be prepared to tell her room mate before move-in day. If she explains her physical needs a few weeks in advance, the room mate will have time to get used to the idea and their meeting and moving-in process should go much more smoothly.</p>
<p>And there is, of course, also the remote possibility that her assigned room mate would also have a problem with a top bunk for some reason.</p>
<p>Does every dorm room have bunk beds? Perhaps if res life knew, they could place your daughter in a room that does not have bunk beds. I agree with Consolation, that your D might come off as controlling, and your D and her roommate might get off to a poor start because of this.</p>
<p>DD just got an email from the future roommate today saying that she was going to get a loft. She doesn't care what DD does with her bed. Some rooms have the beds bunked, some have them both on the floor. Many of the rooms in the dorm have been made into "temporary triples". We are so very glad that didn't happen to DD. In those cases the school decides if the beds will be bunked or lofted, then there is a single bed as well. DD's room is large, I'm not sure why it was not made into a triple as well but the two of them will have plenty of room to arrange things to suit themselves. </p>
<p>So is the room mate issue the only objection left or is there anything else I haven't thought of?</p>
<p>You owe it to them to let them know. The hoops (letters from docs etc...) she will have to jump through are the same as anyone else with a physical or mental handicap. I ran a youth soccer league for many years and there was a time when we had a player, unbeknownst to us, who was mildy autistic. One of his triggers occurred during a practice. The parents never thought to tell us since there had never been a problem in previous years. We were scared to death...</p>
<p>We have a son with severe anxiety that manifests itself in some OCD traits. It leads to some schoolwork issues but nothing outside the classeroom. We still plan on disclosing them in case a situation arises where something would happen and knowing his issues would be helpful. You never know.</p>
<p>This is no longer about your daughter's comfort level. It is about getting along in a more public environment. If there is a fire and she can not help herself get down a ladder or whatever, she is putting herself and others at risk. At this point she can not possibly predict what might happen. </p>
<p>They will not make judgments about her. They will respect her for her mature approach. If something should happen that hurts your daughter or others because she did not inform the school then they would have definite opinions and I think it would leave you/her at risk of being sued by others and the school.</p>
<p>This is very risky ... is it really worth it?</p>
<p>I have a kid with Asperger's and I struggle with whom I need to inform all the time. It feels as though I am invading his privacy and I do not want people to pass judgment. Truth is they do pass judgment anyway and I might as well make sure the name "creep" "weird" "dork" "strange" do not become his descriptors. So I give them the right words that we celebrate as a family ... "quirky", "nerdy", "unique", "odd ball" ... we have many laughs over all of our OCD behaviors.</p>
<p>My 13 year old son lets kids know when he thinks they may begin to judge him ... he lets them know about all of his odd behaviors ... he is admired for the honesty (well depends who he tells ;))</p>
<p>Your D has the opportunity to show the rest of us that though she has XYZ ... she is a cool person and it does not matter. </p>
<p>By the way, the private info is kept confidential and NO ONE needs to know until they need to know ... when an issue comes up. It is the law I think ..."HIPPA" ... everything can be done very quietly.</p>
<p>Your D may not want to, but she should do the things asked and have the doctor write a general accommodation request that describes the limitations and the "types of things" to do and closes with other accommodations may be necessary as the situation arises. It is the right thing to do because she is now asking for accommodation, even if she does not want to admit it, and there are processes for the school to follow. Residential life will most likely tell her the same thing. All paths lead through the disability office. There are all kinds of kids with all kinds of accommodations that she probably does not even realize. They don't place a sign over your door or broadcast it. Only people who need to know in order to help with accommodations get the info and she controls who those will be.</p>
<p>But bottom line - she is asking for accommodations. She should do those things asked of her to receive them.</p>