College students or T1D parents, please give me your insights on what type of accommodations you’ve sought or had for yourself or your child in college. My son will attend the U of Alabama in the fall, and I am going to submit paperwork for him to receive accommodations. In high school, he’s had excused absences and the ability to have his tech with him, and also “stop the clock” testing. I was just wondering what else he will need, as he’s only been T1D for 2 years. He will live with his brother off-campus, so his accommodations won’t need to include anything to do with housing. Thanks!!
Ability to eat/drink/use the bathroom as needed during testing.
Tell us about “stop the clock”? Our daughter’s says she shouldn’t take tests if her sugar’s out of range.
For his ACT testing, he was able to “stop the clock” and correct his BG and then resume testing. He didn’t get extra time, just time enough to eat a snack, etc. and then resume testing. He is also allowed this at school.
Got it. That makes sense, thanks!
We just started the accommodations journey (she’s in 7th grade), so I’m hoping others will chime in with more suggestions, if there is anything else that would be good to include.
Congrats to your son — I hope he has a wonderful transition to college life!
I graduated college in the 80s and lots has changed since then (Captain Understatement speaks again😊). I don’t think 504 plans came out until later, so I just went and took care of myself, did what I needed to do - I probably carried a snack with me to class and stepped out of I needed to. I let each new roommate know about my diabetes - not to touch my insulin, ask if they wanted some of my snacks, and of course let them know what my “low” signs were (no BG meters at the time) and what to do… I don’t think my professors knew about my diabetes unless I chose to tell them. Rules at my small college were fairly liberal - you could step out of class and if you missed your scheduled session you could sit in on another one; professors understood if something came up so you could negotiate a new due date for assignments - within reason of course and there were limits… Rescheduling tests was another matter but could be done under exceptional circumstances. Food was allowed in your dorm room, and most of us had a fridge (although mine was the only one with insulin in it).
Don’t hate me for saying this but taking care of things on your own is part of the college experience. I personally would rather have handled making any necessary arrangements on my own than having my parents do it; however I have always been super super super independent (I took a train down to campus the night before freshman orientation - stayed at a hotel, caught a cab to campus, found the housing office (I had not gotten a notification of my dorm assignment) and had the cab drop me off. I didn’t realize how hurt my mom especially probably would be/was not to go with me, and I was probably the only freshman who didn’t come with one or both parents, but there was no questioning my ability to get things done.
I’ve heard there are groups for students with diabetes at many colleges - if he’s looking for others to connect with he could look into that. I would suggest notifying student health of his diabetes so if something were to happen they would have his info - that’s something he should take care of.
Be prepared to cut or at least loosen the cord - it might be time for your son to take charge of things.
Don’t hate me.
Thank you! Since you have a 7th grader, it is worth the effort to get ACT and SAT accommodations in place by high school. My son’s school guidance counselor had to file the paperwork. Basically you have to substantiate the diagnosis and explain why accommodations are necessary. He was able to take the ACT with a private proctor and over the course of 2 weeks. He ended up taking it all in one day, but he was able to have his phone for his Dexcom and snacks, and, as I explained earlier, “stop the clock”. T1D is alot and the tests are stressful. For our kids to have to focus on the test, all the while managing their BGs is a huge disadvantage. My son didn’t want these accommodations, but in the end he fully understood the need. It paid off because his tuition is paid for through scholarships. UA has an Office of Disability services and T1D qualifies for testing in a testing center, and for the ODS to manage any related issues with the professors such as illness, absences, MD appointments, make-up work and so on. Basically, they will have his back if he has any issues with a professor. I am just starting the process with them and was hoping for insight on what all he will benefit from since we are still fairly new to this life.
I hope this helps for you and your daughter and if you need any help down the road, I’d be happy to share what I’ve learned. Blessings!
Thank you. He really does manage himself well. He was diagnosed at 15 and has made a 4.0 in school ever since with an A1c of 5.8! What I’m asking about is specifically is submitting the paperwork for the Office of Disability Services to have accommodations in place for absences, MD appointments, and for him to be able to have his phone with him at all times due to his Dexcom. I guess I could make him do all of this, but he’s busy applying for scholarships, and as you know, dealing with MD offices for paperwork, etc can be a full-time job. I have been making him manage his prescriptions and supplies for a while to prepare him. He is very willing and capable, but he’s my last and I enjoy helping him with all he has to deal with.
Thanks for you insight!
Got you. Back in the day)famous last words) college was very different from high school: some classes allowed a certain number of absences without affecting your grade, and you could make up a scheduled class by taking a different session. Wednesdays there were far fewer classes - ideally professors didn’t schedule that day so they could work and meet with students, etc. People found ways to set up their schedule to accommodate different needs - going to the doctor might be set up around class time, and perhaps student health could do some of the monitoring.
I kind of assumed having a phone in class was standard, although the ringer should be off, you could still get alerts. Sometimes it’s simply a matter of letting your professor know your needs.
I should probably shut up and bow out though, and leave the answers to current students who can speak for what’s really going on now. Congratulations to your son on his hard work and achievement of those grades! I wish him - and you - all the best.
I’m not a parent but was in college myself in the last 6 years. I always told all of my professors on the first day after class. They were really flexible with my needs and told me to do what I need to do to stay healthy. I got sick and had some ketones once and emailed my prof. He just sent me his lecture notes and gave me a couple days extra to finish my homework.
At least at my school, non diabetics were eating snacks all the time during class too and very few professors had rules about not eating unless there was a lab or something. Awesome that he has housing accommodations with someone who knows what to do! Another tip I have is make a buddy and tell them what they need to do to help you.
Has the phone ever been an issue? We use Omnipod and Dexcom, so she actually has two “electronic devices capable of receiving, recording, and transmitting data” or whatever language usually bans phones during SAT, ACT, etc. testing.
I love that you’ve had him managing his own Rxs and supplies, so he’ll be ready to handle it all when he moves out. How early did you have him start, and how? The administrative burden can be so heavy sometimes…
Check out the College Diabetes Network Resources at https://collegediabetesnetwork.org/resource-form. They have information on potential college accommodations and other very helpful ideas. A great resource!
I was adamant about him having his phone with him at school and during testing so we can follow his BGs remotely. His school is private without a nurse and so I pretty much had to educate the teachers and staff when he was diagnosed. They were open to everything I asked for. The loud alarms were a reason why I argued for private ACT/SAT testing and it wasn’t a problem. In fact, our school offered an in-house SAT test and they wanted him separate because they know his “alarms” and didn’t want to disturb other students.
As far as managing his prescriptions, I have just recently required him to refill and pick up. His Dexcom supplies come from Walgreens now so that is so much less work than from a supplier. Our supplier is fantastic and now that everything is established they just auto ship his pump supplies.
His pump has died twice in 8 weeks and both times by the time I realized it he had called Tandem and had customer service on the phone. He was much nicer that I would have been, so probably good he handled it himself. He’s always been independent which made for a difficult early childhood, but I’m so glad now! I probably jump in and help more than I need to, just because my heart goes out to him for what he goes thru and how well he has handled it all. He wishes he was diagnosed when he was little because he says he knows what life is like without T1D.
Accommodations are worth the effort. He didn’t see the point at first, but I told him that when the other kids just study and focus on the test, he has to manage so much more AND try to test in a stressful situation. After he tested, he realized the value and was so appreciative.
I was in college in the '80s as well. While I did not have a 504, I did contact my school about getting a bed-time snack as I was living on campus with a food plan. They asked for a doctor’s note, which my endo wrote. This allowed me to get a “snack” each day, which turned out to be a bagged lunch with a sandwich and piece of fruit. Thankfully, my roommate had a mini-fridge! I would eat 1/2 sandwich if my BG was below a certain level. The rest went in the fridge for any lows, and was also shared with others - word got around that if you missed a meal to come and check our fridge!
I always told my roommates at the start of the year about my diabetes and what to watch for when it came to lows and when to call for help. I also let my teachers know, just in case I needed assistance during class (never did, but it made me feel better knowing they knew). As for treating lows, I always carried some hard candy with me. It was easy to discretely put a piece in my mouth if I felt I was dropping. I never had to step outside.
Today, phones can be an issue in K-12, although I’m not sure about in college. As I said, I never had a 504, I just spoke to my instructors - and cell phones were still a thing of the future then. Hopefully, some other members of the group can advise you on that.
Hope this helps!
T1D 56+ years and counting!
Congrats on your son’s new adventure. There are a lot of great replies already listed, yet I’ll throw in some info, too. My view is unique as I was severely undereducated with my diabetes care when I headed off to campus. If I was upright, I was good was the mentality for my athletic childhood, and I was on archaic insulins. So, I went through my first intensive diabetes training, including knowing what a carb was, while trying to master my organic chemistry courses. It was a lot, yet gratefully I was volunteering at the diabetes and nutrition education office at the local hospital a few blocks away. Will your son be seeing the same healthcare team? Will he still be in the same area? If not, establishing at least his primary care well ahead of starting school could be a relief, particularly if learning bus routes, etc, are needed like it was for me. It took my professional life to lead me to diabetes support groups, yet that might be something to pre-plan with JDRF, etc. That could have led me to a few wonderful people sooner, yet I was destined to meet an incredible professor and CDE that introduced me to a lot of diabetes humor and the bonding through it. The more I think of it, there were supervisors of paint crews with T1, a fiesty and loving mailroom supervisor mom of a T1, a few random students, etc, that also enriched my college life and made a diabetes home for me, too. It’s nice to have someone understand the hilarious and filled with rage occurences you have to go through in a day. The off-campus housing should be great for his dietary needs, yet non-archaic insulin make cafeteria weekend brunches a lot easier to handle without a mini fridge at your disposal. Ironically/sadly/ignorantly I never knew to interact with the disability office. I spoke about my diabetes a lot for scholarships, yet never knew it could be classified as a disability and/or something to accomodate outside of a loud orange juice box straw wrapper. I did try to unwrap those straws and granola bars prior to the beginning of exams :). And, cell phones were still fairly new on campus, yet as another poster mentioned, if it was a class policy not to have them, I’d likely just use the other receiver. CGM’s didn’t exist yet, so likely a mere heads up to the professor, if not class, that alarms could occur would be thoughtful/needed. I didn’t drive in college, yet lately I have been pulling over to the side of the road A LOT to wait on hypoglycemias to correct. That might be something he needs to address if he’s late to class/an exam, etc. And, this didn’t apply to me at all, as I choose to abstain from alcohol, yet college seems to be when those limits are tested. I’m not sure if I can unbiasedly contribute an opinion there, yet some CDE’s advocate for teens to experiment with alcohol, maybe even pot, prior to college under the safety of parental control. And, no, I am not sure how that is legal outside of travelling abroad. Others set up sober babysitters of sorts, etc. It obviously can get very dangerous if others do not know about his diabetes and assume that a low blood sugar symptom or even him passed out is due to excessive alcohol consumption and do not call for paramedics, etc. Locally, that occurred wtih a teenager and because they were underage, they didn’t want to get in trouble by calling for help for someone they thought merely passed out from being drunk. On to a lighter topic…what else? If he will be using the on-campus gym/pool/weight room, see about scheduling requirements and if they conflict with any of his glucose management needs. And, of course, however his medical insurance is covered, make sure that it all lined up perfectly. Most full-time college students can stay on their parents’ insurance until they are 22 years old, yet there are differences in policies/job losses/open enrollments, yada yada. There are also sometimes an on-campus crew of volunteer students that serve as a first responder/paramedic sorts, usually pre-med students. I’m not sure if I ever contacted them about my health, yet that wouldn’t be a bad idea as they would likely be even faster than the local city paramedics to help. I assume he’ll have a glucagon kit and emergency insulin, etc. in his backpack as well as a medical ID bracelet. I was also surprised with how much walking I got in for a day across campus, even at a small private university. If he’s at a larger school, many students seem to use bikes, etc, too. Being ready with a lower temp basal/snacks would likely be a good thing for the first week. For me, when I started the intensive diabetes management, I had a weekday basal and my endo’s “toad on a log” basal for very long study days on the weekends. Pumps obviously make this a cinch, though. Oh, and, if you haven’t already planned for it, care packages really do go a long way. I remember feeling swallowed up and overly anonymous at times in the beginning of campus life. It was nice to have a tangible reminder from someone that they adored me and knew me. Pinterest is almost as life chaning as IPT/CGM, and will likely fill in the blanks for great ideas there from low carb treats to school supplies to a quick hello note with a $5 bill. Best of luck to him, and to his brother, too!
I’m a freshman in college, and I used CDN’s resources to know what accommodations to request!
Here’s the link I used, it has a bunch more than just accommodations advice too: Preview: CDN's Off to College Booklet for Students by The... - Flipsnack
Thank you! This looks like exactly what I need!
That’s a superb answer- you are so right. I also like how you said it with understanding and kindness!
I would make sure that all Provisions are in place to learn online with no contact. And that he can leave or get a leave of absence if covid-19 interferes given the new strains and unpredictability as well as the carelessness of most college students let alone the Alabama covid parties that can’t be good with new strains, in Alabama and many other places in the country. Definitely check on accommodation if he gets sick. I’m not a risk-taker so I would take off another year until I know things are safe. If he’s going for it just make sure he has what he needs in this area. Do they even have a mask mandate there?
I went to college from 1992-1996 and you’ve echoed my sentiments exactly.
Of course I had to tell my roommate, and if anything became an issue I would tell my professors. But overall, I was just another student (only I had a doctor’s note in my pocket). If my diabetes ever became an issue (say, hypoglycemia in the middle of a test) I dealt with it myself-- why would I involve my mother? It’s not a good look for a college student.
Bear in mind also that hybrid closed loop systems are getting better and better, and fully automated insulin pumps (fully closed loop bionic pancreas systems with both insulin and glucagon chambers-- google Beta Bionics iLet) are right around the corner, which should alleviate a huge amount of the burden from your kid in managing their diabetes.
If your kid is in 7th grade, you’ve got 5 years to prep them for independent living with diabetes-- especially with innovations down the line, it seems like plenty of time to get them up to speed!