Teen with hydrocephalus drivingBy Krishna Jagannathan

I remember how excited my friends were in high school when they first got their license and I also looked forward to the day when I would be able to drive. For most teenagers, driving is an important rite of passage. They are no longer dependent on others to take them where they want to go. It takes a long time to become proficient at controlling the car, observing the rules of the road and exercising judgment about the appropriate response to various scenarios in the driving environment, even for an individual without hydrocephalus. Having hydrocephalus adds a whole layer of complexity to the learning process. Granted, some people with this condition do not have any major medical problems and are able to lead a normal life. Others vary in the degree to which their ability is impaired. So what do you do to prepare your teenager for this milestone given their medical condition?

Most people with serious medical conditions can buy medical alert ID bracelets that list their condition and provide information about how to contact their doctor in case of an emergency. It had never occurred to either me or my parents to get one for me because I had my last shunt revision at 11 and fortunately never had to deal with medical complications resulting from a shunt malfunction since. But it is something I would strongly recommend for teenage drivers, even if they have had no past history of medical complications. Some of the symptoms of incipient shunt malfunction can actually mimic alcohol intoxication. If a problem occurs while the teenager is driving, which causes them to be pulled over, the police may delay getting prompt medical help because they misinterpret the cause of the behavior.  It’s critical for the teenager to exercise good judgment by restricting alcohol intake or completely abstaining before driving to avoid such misperceptions by law enforcement (and legally, teens should be abstaining anyway). This requires open and honest communication between teenagers and parents about the teenager’s role in managing their condition.

Most of my challenges in driving have come from the side effects of the condition rather than medical issues.  Hydrocephalus typically affects visual acuity, coordination, judgment, and concentration, all of the skills which are necessary to drive. Just learning how to coordinate between controlling the steering wheel and applying the accelerator or brake can be a daunting task when you have poor motor skills.  I initially learned to drive on a stick shift, which was the car I would eventually be given to drive.  Therefore, I had to coordinate shifting gears along with managing the other controls of the car. For someone like me, this was the most frustrating part of learning to drive because I did not have good coordination, to begin with, and seeing my friends master driving so easily affected my self-confidence. Since most cars today come standard with automatic transmission, this does not pose a problem for the teenager driver.

I still have problems judging distance or relative speed, which is a critical skill, especially in changing lanes. It always amazes me to see drivers effortlessly merging across two or three lanes of traffic on the freeway within seconds because it’s a skill I have never mastered. I never drive in the leftmost “fast lane” on the freeway even if there is a long distance to my destination because I need a lot of clearance and time to change lanes and I am afraid that I will never be able to change quickly enough to get into my exit lane. If distance perception is a problem, the best solution is to maintain extra following distance between vehicles as well as teaching teenagers to constantly check their rearview mirror while driving to be aware of what is going on behind them.

I have trouble parking, even in clearly demarcated lanes, because I can’t judge the distance between my car and the next lane once I am in the car so I end up parking closer to one side or the other instead of exactly in the middle of the space. I generally avoid parallel parking, again because I can’t accurately judge whether or not my vehicle can fit into a given space. It also takes me longer to reverse out of a space when there are cars parked anywhere behind me because I can’t judge how far away they are from the back of my car. As of 2016, it is mandated that all new vehicles come with a rearview camera, which will certainly help with this issue, but of course, not everyone has the finances to buy a new vehicle, nor would they want to give a new car to someone who is a beginning driver or has difficulty driving.

When I first learned to drive, I had a lot of problems with navigating by myself. All I had was a Thomas Brothers physical map. So if I wanted to get from one point to another, I had to chart my route out on the map first, then write it down and commit it to memory. People with hydrocephalus can sometimes have difficulty telling the difference between left and right. On a map, of course, left and right are correlated with cardinal directions: north, south, west, and east. If I am figuring out how to get somewhere, it isn’t enough to tell me to go west 2 blocks and then turn right, for example, because I have no sense of what “west” means in terms of where I am currently located.  Navigating while driving doesn’t allow a lot of time to process and convert directions to an easily comprehensible form. Of course, now smartphones have GPS so route guidance can tell you when and where to turn and even re-direct you in case you miss the turn. It’s definitely a worthwhile investment to have some form of the automated navigation system in the vehicle that the teenager will be driving.

Hydrocephalus can also affect memory. Even though I have lived in the same city all my life, except for familiar routes which I travel on a daily basis, I still have trouble navigating without GPS even if I have been to a place frequently before in the past. Before I go somewhere for an appointment, I usually do a preview drive the day before. While GPS may get me to the actual address, I still need to familiarize myself with where to park, how to get from the parking area to the place where my appointment is, and anything else that may interfere with finding my way, like construction activity. Anything that deviates from my expected route creates problems for me so I always have to plan ahead.  I am currently self-employed, but it would have been a serious obstacle in my career if I had to for work and was expected to drive in new cities to get to a conference or a client meeting but didn’t have the time to prepare in advance.

Driving at night is one of the skills a teenager should be comfortable with before getting a license. Just getting experience behind the wheel is insufficient because hydrocephalus can affect vision. For a long time, I used to avoid driving at night, because I could not see very well. Many high-end vehicles now have an array of technology available to assist drivers, including adaptive headlights, adaptive cruise control and braking, blind-spot monitoring, and lane departure systems. (Car and Driver new night driving features.) In time, these may be standard features in all cars, allowing teenagers with hydrocephalus to experience the same freedom and mobility as their peers without experiencing undue anxiety, as I did.

Compounded with problems judging distance and depth, I was afraid of making mistakes because I could not accurately distinguish the road in front of me. At first, I had to have someone else with me in the car. Of course, that is not always possible on a daily basis. Over time with continued practice, I am fairly comfortable driving along routes I normally travel in the daytime. It does impact my social life, though. I can’t meet friends for dinner or other social activities at places that fall outside my travel radius unless they are willing to come and pick me up. I also can’t offer to drive other people at night, so most of my socializing has to occur during daylight hours. I have learned to accept these limitations but there are other options available.

Programs for vision therapy can help people who have difficulty with depth perception, seeing things in 3D, and other associated visual problems that are common in those living with hydrocephalus. If you choose to pursue vision therapy for your child, the therapy should be started with children with visual deficits well before they begin learning to drive because the same problems affect other areas of their lives like reading and athletic ability. Although having hydrocephalus can make learning to drive more challenging, there are many resources available to help a beginning driver deal with the limitations of their condition and to allow them to live as normal a life as any other individual without those limitations.

Krishna

Krishna is a new guest blogger for the Hydrocephalus Association. She is private tutor, a mom of two beautiful children, and an adult living with hydrocephalus. We are excited to have her share her ideas and experiences through our blog.