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Your education dreams should not be limited by your hydrocephalus. While many challenges remain, along with associated conditions that may affect quality of life, it is now reasonable to think that a lot of young people diagnosed in infancy with hydrocephalus can live full, productive, happy, and satisfying lives - lives that include a college education.
Heading off to college can be an exciting, intimidating, and emotionally charged event. Not only do you have to decide which classes to take and how to furnish your accommodation, you also have to start figuring out how to take charge of your own medical care, who to tell about your hydrocephalus, and how to assert your independence.
Information contained in this document was sourced from young people with hydrocephalus who are now attending college, as well as their parents, who are coping with ‘letting go’ while championing their children’s newfound independence.
A note to parents
This information was created primarily for secondary school students who are getting ready to head off to college. Letting your child navigate this transition toward adulthood is an important part of the process of letting go.
Setting the Stage: Before you Go
When you begin considering your college options, several factors usually come immediately into play. The fFollowing are some issues you’ll want to consider before you get too far into the application process.
It is important that you have all your key medical information close at hand, in a safe place/a file folder, a notebook, a binder, or in electronic form. The road to your independence starts here. This information should include:
- Contact information for all your doctors (phone numbers, addresses, email addresses)
- A baseline scan can be done prior to you starting college, contact your Neurosurgeon
- Your medical card/GP card and or Primary Medical Certificate should be taken with you. It is always a good idea to have photocopies of these done in case of loss
- Phone numbers of extended family members and friends to be called in an emergency
- A copy of the Shunt Complications Chart, and Shunt Management Chart
- Any information about allergies to medications
- Your Shunt Alert Card which you should carry with you at all times. Contact SBHI or your Family Support Worker to order yours if you don’t have one
If you decide to attend college far away, you must also put into place a plan for local care, in the event of a medical emergency. Contact a GP and pass on any information about hydrocephalus to them that they may need to assist you with the management of your condition, as well as any other health needs you may have.
Visit the Student Health Centre
Who Else to Tell?
It’s a good idea to tell your residence officer if you are staying on campus or college counsellor 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. Also, alerting your counsellor to the signs of a shunt malfunction could be helpful.
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.’
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. Email and mobile phones can make things easier, it’s not hard to send your parents an email/leave a phone message every few days, letting them know what’s going on.
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 important! Not just partying, but meeting different people, participating in challenging and exhilarating conversations, and being exposed to new ideas. Expand your boundaries: 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 centre, or intramural sports.
Headaches are a fact of life for a lot of young people, whether or not they have hydrocephalus. While the stress of deadlines and exams, irregular sleep patterns, too much junk food, and student life in general can sometimes cause headaches, when you have hydrocephalus, as you know, headaches can be more worrisome and potentially more serious.
It can be hard to tell the difference at first between a regular headache and a ‘shunt headache’. If a headache disappears or lessens after you take your GP recommended headache medication and lie down for a nap, chances are it’s not shunt-related. However, if a headache persists, or if you have doubts or a gut feeling that something is not right, follow the shunt complications protocol. As the saying goes, it’s better to be safe than sorry.
It’s a fact of life that many college students experiment with alcohol. According to a number of neurosurgeons, there’s no medical evidence that a shunt directly affects your reaction to alcohol. However any prescribed medications can and will affect your body’s reaction to alcohol in ways which you may not be aware or ready for. 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 not be drinking alcohol. 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, or a day at most; if symptoms persist, you may be experiencing a shunt malfunction. Again, if you have any doubt, follow the shunt complications protocol.
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 with a number of like minded friends who also aren’t interested in parties and the like and other students choose to return home for weekends.
It is important, when you’re researching schools, to find out what services are available for students with specific learning requirements. 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.
Congratulations! Having made it through all this, you’re practically an expert on college yourself, and your knowledge is about to increase exponentially.
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 part of this process: your feedback, your willingness to share your hard-won knowledge with us and with those coming after you, will help us provide more resources like this one 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!
However, 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 quiet, and let them have a go at it.