By the time my son Robby was accepted at Temple University, I’d already been through the college transition with his older sister three years earlier. I knew how to fill out the forms and what dorm room supplies to buy, but this time was much different. During the previous two years Robby had begun living with an auto-immune blood disorder.
His condition required medication, regular lab work, and it had already brought him to the hospital several times. I remember lying in bed at night, scrolling through the “what ifs…”
- What if he forgets to take his medication?
- What if his disease flares up and he needs immediate attention?
- What if he puts himself in danger by ignoring the doctor’s limitations?
A teenager who tests boundaries – nah, that could never happen!
The potential risks were decidedly not funny — I worried that my son’s “developmentally appropriate” boundary-pushing would lead him to behavior that could have serious health consequences. And his responses of “I forgot” and “It’s no big deal” made me positively nauseous. I realized that the best solution was to boost Robby’s skills to manage his complex life and deepen his comprehension of the very real stakes.
At the core, this is just a more intense version of the same challenge any parent faces as they send their child to college. All parents have mixed feelings about launching their kids into a more independent life. They’re not sure their child is ready for a complicated and potentially dangerous world where some mistakes can lead to getting hurt.
And all teenagers want to prove to their worried parents that they are capable of independence, sometimes stretching boundaries they don’t like. It’s a normal, but unnerving dynamic.
Parents of a teenager with a significant health issue (physical or mental) already understand that some mistakes have powerful consequences. But parents can’t just flip a switch after spending years as the persistent advocate and tireless monitor, and teenagers aren’t going to be ready to take lead without some intentional preparation for life outside of their parents’ safety net.
For me, Robby’s launch to college was another reminder that the goal of parenting is not to raise a child, but to raise an adult. I wanted him to build the infrastructure for healthy independence, so that meant I needed to shift my stance from doing for Robby, to becoming his partner as he developed the confidence and tools he needed.
I sometimes joked that learning to manage his health was a scarier version of learning to do laundry – except you can’t just buy more underwear to get yourself out of trouble.
So we started well before he left for Philadelphia, giving him time to understand the priorities and practice the skills that would make the transition smoother and less harrowing. Here are a few of the lessons we learned:
Build Everyday Confidence
Begin with a conversation. Map out everyone’s questions and think through the process together. What is your teenager already doing for themselves? What is the next natural step? For example, a high schooler can:
- Know their condition. More than just the diagnosis, a basic grasp of what is actually going on in their body fuels understanding of why the medical interventions and limitations are so important.
- Practice being involved. Reorient the focus of medical conversations so your son or daughter is at the center, ready to ask questions and share their opinion first. This demonstrates respect for their capacity and gives them space to learn vital self-advocacy.
- Practice being responsible. It takes time and organization to keep everything on track. Your teen can manage logistics by arranging medication refills, and coordinating with you to make the necessary appointments.
For teenagers, the message is that maturity means both self-determination and responsibility. Look for tools they like – a medication reminder in their phone, a calendar app for tracking appointments. They’ll learn that you loosen the reins as they successfully handle more of the day-to-day work, but also know that their parents remain ready to provide back-up and advice.
For parents, it’s important to remember that it takes time to learn these life skills. Expect that mistakes will happen, and build in backstops that help head off real danger. Give them plenty of praise for what they did well, and calm correction when something goes wrong. Your teenager will value your approval and still be able to see you as a safe harbor in times of trouble.
In my experience, Robby was at his most mature when handling his medical condition. He was well-versed in the nuances of his illness, kept up with his medication reliably, and was a thoughtful voice in considering treatment options. It often made me smile wryly, wishing he would apply the same skills to schoolwork or household chores.
Now You See It, Now You Don’t
An extra complication of this phase is that your child will become a legal adult around this time. At 18, he or she can decide what you learn about their life, even from the school and the doctors, and even if you pay the tuition or hold the health insurance. There are documents that allow those institutions to share information with you, so make sure you have them in place, just in case.
Of course, this tricky perspective shows up in unofficial ways too. With your child away at school, you won’t know the details of their everyday life. Are they getting enough sleep? Are they existing on more than pizza and coffee? What are they really doing at parties? These are normal worrisome questions for all parents of college students, but any of these could have magnified impact depending on your child’s health status.
The hard truth is that once they are away from home you have very limited control. No amount of checking in will allow you to “make sure” your son or daughter takes their medicine any more than you can “make sure” they do their homework. This reality is all the more reason to build your teen’s capacity to make good choices, and to build trust in case they need your support because of a lapse in judgment or an unintended consequences.
Think About the Unthinkable
It is human nature to avoid the worst “what ifs,” but facing them head-on can reduce some of their power to keep you up at night, and a plan makes coping through a crisis easier for everyone. So figure out the scary scenarios, and agree on the fundamentals:
- When do symptoms get to a point where you need to seek treatment?
- When do you need to go to the emergency room? Which hospital?
- When do you need to call your parents?
Teenagers notoriously act as if they are immortal, so it’s crucial to create understanding and agreement about the seriousness of a situation. Whether the risk comes from your child’s existing condition, or just the realities of college life – drinking, drugs, emotional stress – parents and teens need to have open conversations about potential problems. Teens with a health concern carry more baggage than their peers, requiring pragmatic strategies and more discipline.
A nasty cold could be merely annoying to one person, but a fever could require immediate attention for another. Skipping a dose of medicine might be fine for one, but unacceptably dangerous for another. Shared ground rules help build trust that protect your teenager’s autonomy and your night’s sleep.
My own resolve was frequently tested by the challenges I faced with my son. I admired his fierce independence even though it meant he didn’t want his parents involved unless absolutely necessary. During college, Robby got himself to the doctor and even the emergency room numerous times, but wanted us to wait at home until test results determined the next steps. That was logical, but excruciating as our instincts urged us to go immediately.
We agreed to first consult with him about coming to help, and we grew more comfortable waiting as he demonstrated trustworthy judgment. But, as one flare up became more serious, we set a new ground rule, which dictated that, “If you are in the ICU, then we are always going to be there.” Robby reluctantly acquiesced, quietly appreciating our support even if he couldn’t always admit it.
So if your family is going through this transition, or you see it on the horizon, my best advice is to start the conversation now. Don’t wait until you are pulling out of the driveway in a car loaded with twin extra-long bedding and a mountain of computer equipment to raise the questions. And remember to consider the emotional undercurrent as much as the logistical needs.
Build a plan that adapts to different circumstances, and is grounded in openness and mutual respect. The challenges you face can be daunting, but the process of working through them together will ease the path for you both, and enrich your relationship as you enter the brave new world.
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Caryn Anthony is a nonprofit consultant and executive coach, and a volunteer member of the Patient and Family Advisory Council for Children’s National Medical System. Her son’s diagnosis of anti-phospholipid syndrome (APS) while in high school did more than impact his health status, it widened her parenting approach to encompass the new complexity of family life.
Caryn is the author of “Any Way the Wind Blows” – a blog geared for families raising a child with a significant medical condition. Her writing has also appeared in The Huffington Post, Modern Loss, and Complex Child. She is on Facebook and Twitter.