College! Mack's Mom, Are You Out There?

[Lenna]

This is for Julie (Mack's Mom) and for anyone else who wants to weigh in. I'm looking for loads of advice.

Hi Julie,

I tried to PM you but my message wouldn't go through for some reason. I hope you'll read this, and I'd also love responses from anyone else who has advice about attending college:

Danny has gotten his college admissions and is deciding between 2 schools - one is just a few miles away (but he will live in the dorm) and the other is about an hour away. Obviously one of the deciding factors will be how open they are to accommodations for POTS. Before we get in touch with them, I want to assemble a comprehensive list of what we're looking for. Any suggestions?

I think that Dan is really going to need a single room. He has so many sleep issues! I wish that were not the case because I think it's easier to assimilate into college life with a roommate by your side, but I just don't see that happening. What is Mack's situation? A single or a roommate? And, if he has a single, was that difficult to arrange?

I think we may ask if Dan can take less than a full load of classes, at least for the first semester. And although he's typically pretty active in the afternoons and evenings these days, mornings are still impossible for him. So somehow we have to get him priority for later classes.

What else should we be asking for? Any helpful tips? I'm sure there is so much more to be thinking about and I just want to do everything I can to maximize Danny's chances for success. I'd appreciate hearing about Mack's experiences this year and getting any advice from you. Thanks so much!

Lenna

[DADofPotsSon]

I was in your shoe's 7 years ago. Son #2 chose the university that is 1 hour away vs 20 minutes. it worked out great in the long run. The first year he roomed with another and that turned out good because at home he had his own bedroom and we found out from the room mate that he was having convulsive syncope in his sleep at about the same time every night. All the last 3 years he had the rooms to himself.

The university needed a doctors slip to provide air conditioning and Dr. Grubbs office provided that and it worked well. I did get to know the local EMT's quite well because the university rules was if you were passed out they did require a doctors slip to return to the campus, therefore a lot of trips to the ER, of which the staff at this hospital were super to work with.

Campus security and I became good friends and they were very helpfull during times of syncope, and other times, they did keep an eye on him which was great.

On a side note; onetime a girl had found him out(NCS) laying in the hall at night and stepped over him, he later dated her and she is now his wife.

PM me if you have any other concerns.

DADofPotsSon

[jangle]

I can tell you I thoroughly enjoyed moving out into an apartment with room mates. I don't think I would have enjoyed the dorms, but to each their own.

[bunny]

The roommate/no roommate thing is more of an individual thing than medical concern. I'm with Jangle -- I intentionally lived FAR off campus because I didn't want to deal with the idiotic things college kids do and wanted to be able to sleep in peace at night. As far as the medical side goes, it depends how much POTS interferes with his life. Mine's pretty bad at times, but even with that, multiple GI issues, and a couple of times being given "x months to live" by the doctors, I still stayed independent and lived on my own.

As far as classes go, good luck on getting priority for anything. He'll be a freshie so generally at the bottom of the totem pole for anything. If it's a larger school they'll have an office of disability/accommodations which you might want to contact. I personally didn't go this route as I have a rather fierce independent spirit and generally don't want help from anyone. I managed to do just fine.

[houswoea]

I am a college student! Here are my thoughts. I lived with a roomie when I first got POTS and it was a nightmare. I scared her with my problems, and she always felt like she was responsible for making sure I wasn't in need of medical attention when I was having flares. I like living with roommates and having my own room to hide in.

I get priority registration because I am signed up with the services for students with disabilities. I also get an absence memo, telling my teachers I may need accommodations in when I turn things in or come to class. They have been so helpful for me, and it's not weird at all.

And for the lower class load... that's really up to him, but if he takes less than full time, it'll mess with insurance,financial aid, scholarships and other stuff like that, so watch out

[Lemons2lemonade]

I just graduated college and i think having a roommate is so important. Even more so, because he is ill, he is going to need that support network to help him out. Moving out of your house is really stressful, i would imagine even more so with an illness and it is nice to have someone to go along that journey with. When i was a freshman, i didn't sign up for housing early enough and had to live with an RA who was never there--basically the same as living alone. It was terrible. Not only was it lonely, but it was so hard to meet people. I can only imagine how much more difficult meeting people would be with the whole pots thing going on. At the same time though, i understand that he is going to be more sensitive to his environment than his peers, but honestly, the dorms aren't that crazy where there is a lot of loud music and parties going on. They keep them relatively quiet and most of the parties are off campus. More importantly, it teaches you how to live with someone, which is a valuable life skill. Some other things to consider is what the student body at each school is like. Some schools are more quiet and religious, some are more outgoing. In my school, and other campuses as far as i am aware, they have what are called dry halls. These are dorms for kids who aren't into the drinking and partying scene and may be more advantageous peers for your son since they have a more laid back lifestyle. One other thing to consider, and i understand this because i went through college with pots,is that there is a lot of exposure during this time to drugs and alcohol. Even the best of kids are going to get exposed to this. And these are things that are going to make pots so much worse. I had experience with a few, and none turned out well. So just a word of caution.

[ramakentesh]

The roommate/no roommate thing is more of an individual thing than medical concern. I'm with Jangle -- I intentionally lived FAR off campus because I didn't want to deal with the idiotic things college kids do and wanted to be able to sleep in peace at night

I was one of those idiotic college kids!

[Lenna]

Thank you so much for your replies. It really helps to hear about other people's experiences. The biggest concern is the roommate thing - Dan wakes at the drop of a pin. He goes to bed early and needs a QUIET atmosphere. It would drive a roommate nuts...how can he tell a roommate not to make sound, turn on a light, have friends over, listen to music, etc. after 10 or 11? And if Dan doesn't get enough sleep, he might be too Potsy to attend classes and do his work, especially if it's cumulative over a few days. I wish he could have his own bedroom in a suite but that just isn't an option for freshmen at his school. We're trying to arrange for a sleep study, but it's an insurance battle and it's not likely to happen soon. I wish we had started that process sooner.

[Maiysa]

HI All,

Has anyone heard from Mack's mom? I tried to send her a message and it says she cannot receive any more messages. I'm a bit concerned about her and am hoping that she's just happily busy. If anyone wants to PM to tell me if you know anything that would be great. She's just usually very active on here. Thanks!!!

[Lenna]

Dido for me...I'm concerned that she is no longer posting and not receiving private messages.

[issie]

Dido for me...I'm concerned that she is no longer posting and not receiving private messages.

[issie]

Dido for me...I'm concerned that she is no longer posting and not receiving private messages.

She is on two other forums and is probably wrapped up in those. Mostly dealing with MCAD issues. If you want to PM me, I can tell you the forums she is on - since not sure if I'm supposed to post them or not. If you want to get in touch with her that way. Her in-box is just probably full and she isn't checking it often. Happens sometimes.

Issie

[Maiysa]

Issie, thank you for that information. Well, at least if she is posting on other sites, that's good news!!!! That makes me feel better. Thanks again!! Wish we all lived in one town so we could all meet if possible and support each other. This is the pits sometimes. But could be worse. Have a healthy day!!