A chronic disorder or disability can thwart the natural process of achieving autonomy. While most kids are beginning to savor the sweet taste of freedom from Mom and Dad, illness may force an adolescent to rely on his parents nearly as much as when he was a younger child. This can set the stage for parent-teen conflict.
One way that some adolescents sometimes attempt to assert their independence is to balk at taking proper care of themselves. No doubt an element of adolescent risk-taking behavior also plays a part in decisions to disregard medication schedules or restrictive diets. Unfortunately, the consequences of such actions can be deadly.
The helpless feeling that accompanies a prolonged or serious illness is difficult to handle for patients of all ages. A parent’s top priority is to restore a youngster’s feeling of control over her life—within the boundaries dictated by the health problem, of course. The first step is to include your son or daughter in medical decision making.
For instance, maybe you always tend to supervise him when he takes his medications. “It’s eight o’clock! Did you remember to take your insulin?” Why not offer him the flexibility of injecting himself anytime between, say, seven o’clock and eight-thirty? It may seem like a trivial matter, but it’s not. Handing a teenager increasing responsibility for his own health care allows him to feel grown-up and not quite so powerless. It’s easy to understand why parents of an ailing child might waver in enforcing discipline at times. The poor kid is going through so much, they reason, let’s cut him some slack. There’s nothing wrong with making allowances now and then. But as a general rule, mothers and fathers should employ the same style of discipline they’ve always used. Parents who cater to every whim or fail to correct misbehavior are ultimately doing their son or daughter a disservice. Children appreciate being treated like their peers.
Adolescents want nothing more than to feel accepted by their peers and to not be perceived as “different” or “weird.” But blending in with the crowd can be an improbable feat for the paraplegic teenager who must maneuver her wheelchair through hallway traffic between classes; or the youngster whose severe asthma forces him to watch enviously from the sidelines while his buddies play touch football on a crisp fall afternoon; or the baby-faced boy who looks several years younger than his classmates on account of sickle-cell anemia, which has delayed his sexual maturity.
Teens who are chronically ill or disabled tend to pal around less with other kids outside of school. As noted earlier in this chapter, the logistics of getting around and the time demands of managing an illness can pose a problem. But most of these teens are desperate for contact with their peers—and, as they grow older, romantic intimacy. They have the same curiosity (and anxiety) about dating, sex, their bodies, as other adolescents, a fact that parents and pediatricians don’t always appreciate.
Kids with long-term health problems may have more than the usual worries, though, about their attractiveness to potential romantic partners. “This boy at school asked me out to a movie. I really like him, and I want to go. But what if I have an epileptic seizure while we’re out? I’m afraid he might panic and never call me again.” If you aren’t comfortable answering these types of painfully blunt questions, ask your pediatrician to initiate the discussion during your teen’s next office visit.
School Disruptions: Easing the Transition Back
Lengthy hospitalizations or periods spent convalescing at home can lead to significant problems at school, not only academically but socially. Following a prolonged absence, even teenagers who normally aren’t all that fond of school may be moved to kneel and kiss the scuff-marked linoleum inside the front entrance, if for no other reason than to be among their peers again. The reverse situation is also seen, where perennially conscientious students become almost phobic about returning to school.
Parents can help to ease their youngster’s transition from patient to pupil well in advance of the first day back. Ideally, you don’t allow your child to fall too far behind in her classes, provided, of course, that she is well enough to tackle the work. Here’s what else you can do:
- When a youngster has a serious condition that changes his appearance or can be expected to impair his academic performance, consider asking the clinic nurse to update the school nurse, counselors and teachers about the nature of his illness and what he’s gone through during the past weeks or months, and suggest ways that they can assist the returning pupil. Parents also can assume this role. Or perhaps the young patient would like to address his peers personally. Before proceeding with this plan, however, be sure to clear it with your teenager first.
- If your child must take medication while at school, contact the nurse’s office and ask for the parental-permission forms to be sent or mailed home well before the return date. Teachers should be made aware of disease symptoms and/or treatment side effects that may leave the student fatigued or unable to pay attention in class.
- Prepare your youngster for the return to school by role-playing possible situations: “Okay: If a friend asks why you were in the hospital, how much do you feel comfortable telling her?” “What if some kid starts teasing you because your face is a little pudgy from the medication you’re taking? What would you say to him?”
- Request that teachers send the teen weekly notes updating him about what went on in class, in addition to all of his homework assignments. Other creative alternatives are to have lessons tape-recorded or video-recorded; have video cameras set up in class and at home so that the patient can interact with his teachers and classmates.
- Discuss with your school district the possibility of its hiring an in-home tutor for your child. In some school districts this is required. The use of computers with e-mail can be very helpful in this regard.