In her monthly Teens Take Charge blog, Madeleine Darowiche shares her experience of starting college and offers some tips for making this transition smoother.
By Madeleine Darowiche
Transitioning to college can be difficult for everyone, but it can be even more challenging when dealing with a chronic medical condition such as hydrocephalus. I have found this to be true recently in the few months since I began college.
I started school this summer at the University of South Florida, St. Petersburg campus. Overall, it has been a positive experience despite a few difficulties. My first obstacle was navigating campus. I have zero spatial ability. I intentionally chose a school with a small and compact campus and I have been able to navigate my campus with relative ease. I definitely recommend this type of campus to anyone who struggles with spatial abilities, if possible, as it has been extremely helpful to me. It has also been helpful, at least in my case, to start college in the summer because the campus is less populated and it makes it easier to find my way around. This summer I had no trouble finding my two classes, since they were located in the same building. This Fall semester I am taking four classes. Three of these classes are located in the exact same building as my summer classes. So I feel like I planned well to meet the challenge of my spacial ability difficulties.
There is one thing that has been a real challenge for me as I start college: making friends. Since I’m no expert, I’m not sure if this is hydrocephalus-related or not. However, I do know that the reason I do not understand sarcasm whatsoever is hydrocephalus-related. Eye contact is also something I am not so good with, so I feel that is a bit of a detriment. I am working on both of these things, but I do know they impact my ability to make friends and this has been one of my most difficult obstacles thus far. It’s hard. Many people do not understand hydrocephalus and its adversities. Although I am struggling with that, I am keeping a good outlook for this semester because there will be more activities and chances to meet people.
As far as telling people about hydrocephalus, I only told my Resident Assistant (RA). I had planned on informing my summer roommates about it, but because we each had our own bedroom and different schedules, there was never really a right time to do it. That’s one great thing about college – you can tell whomever you want to tell about your condition. However, I would make sure at least a few people know about it in case there is an emergency. I plan to make my roommates aware because we will live together for the entire year. I know it can be difficult to facilitate a conversation about hydrocephalus when so many people are unfamiliar with it, but you can ask your RA to help you initiate this conversation. You can share just the basics or whatever you are comfortable with sharing. The ball is completely in your court.
If you require special accommodations, be sure to let the appropriate people know so that you can reach your full academic potential. Sometimes it is enough to just make the professor aware of what you will need. Other times, you may have to go through the Student Disability Services Office. Now, you are probably thinking, where do I find this office? Often there will be information about disability services in each class syllabus and included in this information is the office location. However, if it is not there do not be afraid to ask someone. Remember, you are not expected to know where everything is right away! This experience is all new for you and for all first year students.
Regarding what to say when asking for directions or help regarding your challenges and needs, ask your parents for some words of advice beforehand. They were a great help to me in figuring out the right words to use when talking to people on campus. I went to the Disability Services Office, albeit grudgingly, as I do not consider hydrocephalus a disability. I can do anything and everything that a person without hydrocephalus can do and I refuse to hear differently. I do have to admit that I like the way these issues are handled at my school. I received a letter to give to professors that says nothing of my “disability;” it just lists the accommodations I need. I do not have to mention anything to professors, I only have to hand them the letter. In my letter, it talks about issues I have with short term memory and my requirement for extra time on tests. So, my professors know that when they are speaking, I need to be writing notes because I cannot remember what was just said. I am also able to record lectures. And, of course, I am given extra test time, if needed.
Being away from home for the first time has been hard, but I am trying to remember that it probably will get easier with time. I want all of you to know that no matter how difficult the transition may seem, you are NOT alone. There ARE people who know what you are going through. Knowing this has definitely helped me, and I hope it helps you as well. Also, know that you can do this; you’ve been through brain surgery!
Good luck to all college freshmen, and have a terrific year! You can do anything you want, and don’t let anyone stand in your way. You are awesome!
Resources for Teens and Young Adults
If you are a teen or young adult living hydrocephalus, or a sibling or friend, we encourage you to check out the Hydrocephalus Association’s Teens Take Charge (TTC) program.
Teens Take Charge (TTC)
The Hydrocephalus Association’s program – Teens Take Charge (TTC) – trains teenagers and young adults (and their siblings), who are affected by hydrocephalus, to become self-advocates with both health professionals and with their legislators. The program provides support, training, and awareness and fundraising opportunities so that youth can be an effective force in making their stories heard with their representatives.
HA has created a teen and young adult portal which serves as a place of information and empowerment for youth. Learn more about the resources available by browsing the different pages. Consider this a virtual hangout spot and please email us with suggestions and ideas!
HA has also created a place for teens and young adults (ages 12 to 25) to talk via Facebook and Twitter; go check it out! Join us and help create a community of young adults making changes happen! If you are interested in learning more about the TTC program or would like to become more involved please contact Megeen White.
Publications and Online Resources
The Hydrocephalus Association has a number of useful resources and publications for teens and young adults. If you haven’t already, we hope you have a chance to read these publications and visit these other organizations online.
HA Publications and Resources
- College and Hydrocephalus
- Health Care Transition Guide for Teens and Young Adults with Hydrocephalus
- Trending Topics
- Community Voices
- HA Scholarship Program
- Hydrocephalus Resource Library (HRL)
- Spina Bifida Association (SBA) SBTween2Teen
- Teens Health
- International Federation for Spina Bifida and Hydrocephalus
- Ten Tips for Talking to Teachers
- Life After High School: Vocational Training or Advanced Education
- Spatial Navigational Impairments in Hydrocephalus
- Making Friends in College
- Chronic Disease at College – WebMD
- 10 Tips for College Students with Chronic Disease