Preparing for College
College is an exciting, intimidating, and emotionally-charged event. College opens the door to new opportunities and offers personal development, growth, and independence. Transitioning from high school to college can be difficult for anyone; however, those with hydrocephalus face extra challenges. In addition to adjusting to the regular aspects of college life, you also need to learn how to manage your condition. We believe with proper management and careful planning, you can still go on to have a successful and fun-filled college experience. To help ease your transition, we sought out some experts — young adults with hydrocephalus who are now attending college (or who recently graduated), as well as their parents, who champion their children’s newfound independence but must cope with “letting go.” Their tips, guidance, and commentary are incorporated below.
A note to parents: This article was created primarily for high school students who are preparing to head off to college. We know that you have many questions too, but it’s important that your child take the lead in discussing the following topics, implementing plans, and making decisions. Letting your child navigate this transition toward adulthood is an important step in the process of letting go.
Setting the Stage: Before You Go
When you begin to consider your college options, several factors usually come immediately into play. The following are some factors you’ll want to consider before you get too far into the application process.
For some, staying close to home is a safer, more comfortable option. One young woman, for example, told us that she felt her hydrocephalus limited her options location-wise. For her, keeping her parents close by was important when she considered what might happen if she got sick and had to go to the hospital. Luckily, she found a college that she really liked less than two hours from home.
For others, location is not an issue: some young adults, in fact, see setting their sights on a distant college as an important step on the path towards independence. In these cases, creating a balance between your desires and your parents’ worries is crucial. A lot of frank and open discussion may be necessary to reach a solution that supports you and validates your parents’ concerns.
In this article we do not aim to address specific learning, social, or emotional issues: by this point, you’ve already made it quite far in the educational system and are probably well aware of your own strengths and your own needs. Still, if you have any learning disabilities, it’s important to investigate the special services available when you’re researching colleges. Understanding the nature of the services available at each of your options should be a top priority, whether a potential college is near or far from home.
Wherever you choose to go to college, it’s important that you have all your key medical information close by in a safe place—a file folder, a notebook, a binder, an electronic form. Keep any hard copies of information in a folder that is readily accessible by your roommates, RA, or anyone who is able to keep an eye on you.
The additional information you may want to bring with you includes:
- Complete insurance information, including a photocopy of your insurance card, both front, and back (the card itself can be carried in your wallet)
- A copy of your Durable Power of Attorney for Health Care (DPAHC)
- Contact information of your doctors and parents/guardians
- Updated MRI disc
- Shunt card
- Driving instructions to your preferred hospital
Most parents we spoke with keep a second copy of all these items in a separate, safe place—just in case.
If you don’t have one already, you may want to purchase a Medical Alert ID. Knowing that you are prepared for an emergency situation will ease the minds of you, your parents, and those around you. For more detailed information, visit Medical Alert IDs.
If you decide to attend college far away, you must also establish a plan for local care in the event of a medical emergency. The first step is to ask your neurosurgeon to recommend another neurosurgeon near your college. Or, to find a specialist near you, visit our Physician Directory. Once you have identified your new neurosurgeon, follow up with a personal visit at the beginning of the school year, and ensure that he or she receives a copy of your medical records. (For more tips on transitioning to a new doctor—especially if you’re transitioning out of pediatric care, visit Transitioning to Adult Healthcare” and download our booklet, “Health Care Transition Guide for Teens and Young Adults with Hydrocephalus”.
Health Services at College
Parents emphasize, and students (sometimes reluctantly) agree, that one of the first things you should do at the start of the school year is visiting your student health center, meet the nurse or doctor in charge, and give them information about hydrocephalus, including your parents’ contact information. Because this is medical information, it is confidential, so you don’t have to worry about an invasion of privacy. You should also indicate on the standard student health form that you have hydrocephalus; again, this information is confidential.
You should find out:
- When the Health Center is open
- What kind of services the Health Center provides
- Who you can talk to if you have any complications with your hydrocephalus
- How to reach someone if you have concerns or questions
- If there is a healthcare provider at the Health Center who has experience in caring for someone with hydrocephalus
- What kind of services are offered, and whether students are transferred to another hospital if more specialized care is needed
In the event of a complication related to your hydrocephalus treatment, you should know the name of the closest hospital.
Who Else to Tell?
Telling your new roommate(s) about your hydrocephalus is extremely important because it is likely you’ll be around them more than anyone else while you’re away at school. Try to tell them about your condition within a few days of the beginning of school so that they know what to expect and how best to help you should you need their assistance. It’s also a good idea to tell your dorm’s resident advisor or counselor that you have hydrocephalus. He or she may be able to offer support or guidance as you decide who else to tell about your hydrocephalus. Make sure that your roommate(s) and/or RA/counselor know the signs and symptoms of a shunt malfunction or ETV closure so that they can easily assess your condition if you are unable to do so yourself. Help your roommate(s) understand the seriousness of your condition and be sure to answer any questions that they may have as honestly as possible. Also, tell your roommate(s) where your emergency folder is so that they can get to it quickly if the need arises. Finally, ask your roommates and/or RA if they would be comfortable with accompanying you to the emergency room in the event of a problem so that they can make sure that your family is contacted and that you get the care you need as soon as possible. One young woman, now in graduate school, said, “When I told my RA about my hydrocephalus and explained the warning signs of a shunt malfunction, I kind of acted as if it wasn’t a big scary deal, but at the same time said that if it were to happen, it was really critical to take me to a hospital.”
One of our student experts told us that after the first week of school, she felt comfortable telling a new friend that she had hydrocephalus, that she had undergone several surgeries, and what the friend should do if she didn’t see her for a few days (come and check her room). Sharing this information, she said, brought them closer. While you might feel that telling someone about something as personal as your hydrocephalus is too revealing or plays the sympathy card, it can also play a key role in bringing a friendship to a new level.
Another young woman told us that she initially worried about who to tell and what their response would be—but then realized that worrying was pointless. After getting to know her roommate better and establishing some common ground, she explained that, for her, a really bad headache and lethargy could be signs of a shunt malfunction. A malfunction was unlikely, she told her roommate, but if one seemed possible, it was extremely important that her parents be notified, as well as her doctor. She also told her roommate where she keeps her medical info file, just in case she got sick and wasn’t able to grab it herself.
One young woman remarked that she’s sure that a lot of her college friends (especially her sorority sisters) know about her hydrocephalus, but that for the most part, no one treats her differently. “If they didn’t understand,” she said, “then they’re not worth talking to.” Another student commented, “If you act as if you are different . . . I believe others will see you that way. Just be yourself.” Some students have moved beyond simply telling chosen individuals about their hydrocephalus and seized the college environment as an opportunity to educate others about various disabilities—not just hydrocephalus—by participating in awareness and advocacy projects.
Whether or not to tell your professors about your hydrocephalus is a decision that you will have to make once you start your new classes. Even if you register with your school’s disability resource center, your professors will not be aware of your condition, so it is up to you to tell each of them yourself if you so choose.
Whatever your comfort level, it is critically important that you take charge and have a plan set in the event of a complication. Your preparation and initiative will go a long way towards gaining your parents’ acceptance of your ability to make your way in the world as a responsible, independent young adult.
Tips and Advice
When we asked college students with hydrocephalus if they had any tips for those thinking about college, they all concurred that the most important thing you can do is be? yourself, no matter what. “Don’t worry,” one said. “It just stresses you out!” “Have confidence in yourself,” said another, “and others will too.”
They also offered advice on more specific concerns that might come up for college students with hydrocephalus. The following are some of their suggestions.
Consider Your Course Load
One subject to think about is your course load: the number of classes that you will take each semester. Regardless of whether an incoming freshman has hydrocephalus, it is a good idea to register for fewer classes during your first semester. Taking this step is especially important at the beginning of your college career because it will help you understand how large of a course load you can handle. Hydrocephalus adds another layer for those considering this step; a lower course load will allow you to set aside time for attending doctor appointments, recovering from symptoms, and handling any unanticipated hurdles.
Communicating with Your Parents
Most first-year students, whether or not they have hydrocephalus, say their parents want them to check in way too often. While parents’ demands can seem exhausting, especially among all the other demands of college life, parents’ support is important, and so is their comfort with your safety. So, do your parents a favor, and work out a schedule for communication. Email and cell phones can make things easier—it’s not hard to shoot your parents an email every few days or give them a call to update them on your life. Text messages are a quick and easy way to let them know what’s going on.
While hydrocephalus can seem to make parents overprotective, striking a balance between their concerns and yours is crucial. Open communication is not just a good idea; it’s crucial in maintaining your parents’ sanity—and yours. So, let your parents know about the steps you’re taking to ensure your safety. Let them know when you meet with the head of the Student Health Center, let them know how your appointment with your new neurologist goes, let them know when you tell your roommate where your medical emergency folder is—you get the picture. If your parents are confident that you’ve put an emergency plan into place—and if they know the details of that plan—they will be more comfortable letting go.
Communicating with Your Peers
While classes are obviously an important part of your education, your social life is equally as important—not just partying, but meeting new people, having different experiences, and being exposed to diverse ideas. One of the biggest challenges for all college students is forming solid friendships and finding a social group that encourages you to be yourself and challenges you to grow. It might take several semesters, or even a few years, to meet like-minded people. Expand your boundaries beyond your dorm: try out different student clubs or associations; volunteer for causes that are meaningful to you; check out student groups like the disability council, the women’s center, cultural organizations, or intramural sports.
Beyond campus, another group of people can also be valuable sources of information, support, and friendship: other college students and recent graduates with hydrocephalus. These are individuals who know what you’re going through and can offer tips on how to cope with various issues. Contact the Hydrocephalus Association for more information about our Peer Support Program, HydrocephalusCONNECT, which helps individuals living with hydrocephalus get in touch with each other.
Headaches are a fact of life for a lot of young people, regardless of whether they have hydrocephalus. While the stress of deadlines and finals, irregular sleep patterns, too much junk food, and dorm life, in general, can sometimes cause headaches, hydrocephalus can cause headaches that are more worrisome and potentially more serious.
At first, it can be hard to tell the difference between a regular headache and a “shunt” headache. If a headache persists, or if you have doubts and a gut feeling that something’s not right, call home or call your doctor right away. As the saying goes, it’s better to be safe than sorry. For more detailed information, visit Complications of a Shunt System, Complications of ETV, and Other Health Effects.
During crunch time at college, when stress levels are high, some young adults with hydrocephalus report more frequent headaches and difficulty focusing and concentrating. Understanding what your body is telling you—that you need more sleep, more healthy food, even some fresh air, and exercise—can help you ward off stress-related headaches. Learn more about Headaches and Hydrocephalus.
It’s a fact of life that many college students experiment with alcohol. There is no medical evidence that a shunt directly affects your reaction to alcohol. The causes of hydrocephalus are varied and specific causes may have affected brain development. An individual’s reaction to alcohol may vary based on their type of hydrocephalus or specific response to the substance. However, drinking in excess is not good for anyone, whatever their health status.
Still, even people who know better sometimes have too much to drink and find themselves rewarded with that nasty side effect: the hangover. In some ways, hangover symptoms can resemble those of a shunt malfunction: headache, lethargy, nausea, or vomiting. However, a hangover should clear up within a few hours to a day; if symptoms persist, you may be experiencing a shunt malfunction. If you have any doubt, call home or call your doctor right away.
You should be aware that many medications—prescription and nonprescription—are adversely affected by alcohol. Some simply lose their effectiveness, while others lead to extreme drowsiness or dangerous, even deadly, side effects. If you’re taking any medications, you should know their possible effects when drinking alcohol.
One student told us that within her first few months at college, she got caught up in the party atmosphere at her school and overindulged a few too many times. After suffering through several hangovers that she initially feared were shunt malfunctions, she realized that she didn’t need the added stress. Plus, she said, she realized that she could have just as much fun at a party without getting drunk. Now, she either nurses one beer throughout the evening or drinks clear-colored sodas with lime that look like mixed drinks. That way, she told us, she doesn’t have to keep saying “No, thanks” when she’s offered an alcoholic drink.
Other students simply opt not to drink at all. One student said that the alcohol-party culture at his school doesn’t appeal to him. Instead, he hangs out on weekends in his dorm with a number of like-minded friends who also aren’t interested in the party atmosphere.
Understanding Your Accommodations
While there isn’t room here to cover all the academic aspects of college (entire books exist for that!), you should consider a few things. First, as we already mentioned, it’s important to find out what accommodations are available at the schools you research. (If you had an IEP in place during high school, your team should be meeting to help you negotiate this transition.)
Second, we’d like to remind you (and your parents) that this might be a good time to schedule another neuropsychological evaluation. A neuropsychological evaluation can help pinpoint your learning strengths and weaknesses and even help you choose which sorts of classes or departments might be a good fit for you.
Contact your new school’s disability resource center and let them know that you have hydrocephalus. The people who work in this office can help you get any accommodations you may need, from extra time on exams to tutoring services and beyond. Some schools even allow students with disabilities to register for classes earlier than everyone else, which is a great advantage to have these days.
Congratulations! Having made it through all this, you’re practically an expert on college yourself—and your knowledge is about to increase exponentially. We’d love to hear from you about your own college experiences, both good and bad. As more and more young people with hydrocephalus come of age and start to live independently, more and more resources and information will become available to them. You can be a part of this process: your feedback—your willingness to share your hard-won knowledge with us and with those who come after you—will help us provide more resources like this and help future students, just like yourself, take their first vital steps toward independence.
A Note to Parents
All children have the right to independence. They have the right, as they mature, to find out who they are, to explore the world, and to establish a life separate from their parents’. As a parent, you will always worry about your children, whether or not they have hydrocephalus. It’s important, however, that you not let your natural instincts overwhelm your kids. As one mother said, “If you do freak out at the thought of your child going away, do it in private.”
Helping our children reach independence is an ongoing process, and chances are that most of us won’t get it 100% right. But we can support our children and give them tools that will enable them to take responsibility for themselves. We can then stand back, keep our mouths shut, and let them have a go at it.