Shifting age appropriate responsibilities from the parent to the child always seems to be a difficult task for cystic fibrosis families. It’s a slow methodical process that seems to work at a snail’s pace. I think it’s due in large part to the dreaded drop that many young adults are forecasted to face.
This week you’ll hear a podcast with Lise-Courtney D’Amico, who is making her triumphant return to the guest chair after having been a guest earlier in the year. She told an anecdote about how her CF clinic instilled some fear in her as she went off to college. As she tells it, her clinic said that her decline in health during her college years would be all but certain. You’ll be able to hear her interview when it’s released tomorrow.
Quite frankly, that wasn’t the first time I have heard such a statement.
My parents and I had heard it as I went off to college, too, “Gunnar, college will be tough, but you’ll survive.”
The prevailing notion in CF seems to suggest that as parents transition the power of care to their kids (the person living with CF), there will be a decline in overall health.
Personally, I think all of that is just setting up people to fail. Maybe in the days of the childhood illness that was true, but these days, I think there are so many resources available to families to help teach the power of both self-advocacy and self-care to kids before they head out on their own.
This is all about mindset. No, I’m not talking about positivity vs. negativity; rather this is about being physically and mentally prepared for what lies ahead. I think there’s a prevailing notion out there that dictates people living with chronic illness shouldn’t look or plan ahead, and that I think that’s where the forecasted drop in health comes from. It’s hard to trace, but it goes along with living life day-to-day and challenge-to-challenge thanks to the progressive nature of CF. It makes sense because in the old days of CF we were all tied to the inevitability of the condition. Now it’s anyone’s guess as to what the future of cystic fibrosis looks like.
The future is a scary thing because it involves change. If we return to the topic of our parents letting the kids out into the wild, it’s even scarier because parents are forced to trust that their kids will take care of themselves. It’s also the moment when all those years of preparing the kid to be self-sufficient are put to the test.
I want to challenge you to believe that allowing your kid to be self-sufficient will be a good thing.
By the time you are sending your kid with CF off to college, he or she will have had 18 years to prepare for the transition! He should be prepared to develop a routine and adapt it on the fly, carry out mundane CF-related tasks – like ordering medications, making a clinic appointment, get ready to transition to adult care, find and utilize co-pay assistance cards, sterilize nebs after each treatment session, and mix medications – and react to an emergency.
There’s no right or wrong way to train your children to do all of this. Instead, you need to figure out what works for the family. If it means spending 20 minutes every Saturday morning going through the above motions from the age of 15 on or having your kid actively set up his treatments with you each night before bed from age 12 until he can do it himself, then that’s what you need to do!
I think the earlier you start to transition age-appropriate responsibilities, the better. Yes, you’ll be the one responsible for CF care until adulthood, and you should relish that responsibility, but your kid will grow up and command his or her own care for the rest of their lives. In my case, I was taught to handle and care for medications throughout my time in high school, culminating with an education in the sterilization process. Looking back, the only thing I wish I had known was the exact purpose of each medication. I knew Tobi was an antibiotic, but I didn’t really understand why it was used after airway clearance and Pulmozyme, or why it was so important.
Regardless of my physical training, though, I was the kind of person who was excited to be out on my own after high school. After all, I only applied to colleges away from home. I wanted to prove myself, and my parents not only accepted my goal, but also they encouraged it! Despite hearing about the dreaded drop in health, they were more than supportive of my decision to move away.
As our care of CF becomes more and more advanced by the day, we need to be willing to collectively shift our mindset to move away from the aforementioned predicted drop, to a place where we feel confident in the next generation of kids with CF to be able to effectively care for themselves and pursue their individual desires. The first step is allowing your kids to grow up!
