Summer Camp: A Practice Run to Prepare for the Real World

By Lisa Greene, MA CFLE

Summer camp: starry nights, fun in the sun, adventures, friendships.

Summer camp holds so many opportunities for all kids to enjoy and grow. It also provides an opportunity for parents to grow, too. This is especially true when a child has special medical needs.

My teenage daughter was in Hawaii for spring break with another family. It was hard for me to let her go, alone (as in without me) because of her extensive medical needs. The "what if's" kept whispering to me: "What if she gets sick?" "What if she can't get the medical care she needs?" "What if she doesn't take good care of herself?" "What if something bad happens?" I think every parent has worries about sending a child so far away but when a child has cystic fibrosis (or any other special healthcare need), we simply have more to fear and worry about than the average parent.  

What does this trip have to do with summer camp? That's where my daughter’s journey to independence all started. Summer camp was her “practice run” for preparing for the world. And without having had several successful practice runs at local camps, she would not have gone to Hawaii and had the time of her life.

Freedom and responsibility go hand-in-hand and they both happen in baby steps.  As children show they can handle increasing amounts of responsibility, then they earn the privilege of increasing amounts of freedom; and parental trust.

Both of my kids with CF have been attending sleep-over summer camps since about the age of 12. For my son, now 16 and an Eagle Scout, it started with week-long Boy Scout camps. My daughter started attending a church camp at about the same age.

Before the sleep-over camps, at about age 10, they went to day-only camps where they needed to be responsible for taking their daytime medications on their own as well as learning to answer questions about their healthcare, advocate for themselves,  and how to "own" their illness in a new environment.

And before the day-camps, they practiced at sleepovers with friends and in their day-to-day lives.  We allowed both kids to participate in sleepovers as long as they made their medical care a priority. Of course, we taught them how to do all of the things that needed to be done, we practiced at home, and we empowered them to be successful. We helped them pack properly, we wrote down detailed instructions, and made sure that the other parents knew what needed to be done. After doing this with the kids several times (notice I said “with”, not “for”), they soon began doing these things on their own and we became the “bag checkers” instead of “bag packers.” Again, as they showed more responsibility, they earned more freedom and trust.

As Booker T. Washington said, “Few things can help an individual more than to place responsibility on him and to let him know that you trust him.”

Here are some more tips to help your child get ready for summer camp:  

1. Help your child start owning aspects of his or her medical care around age 9 (third grade). This can be small things like remembering to take a pill at a certain time each day. Brainstorm together about ways to do this: set an alarm, use a pillbox in a conspicuous area, link it together with an established habit like brushing teeth, or put a sticky note on the bathroom mirror.  Problem-solve and discuss what went wrong when they "blow it" (and they will); get creative, find solutions.  Reward charts can be very effective to help a child build a new habit. Once your child masters that skill or task, add the next one and so on.

2. Teach your child about the reasons for good medical adherence. Kids are more likely to make good choices about their healthcare when they know why they need to do something and the consequences of not doing it.

Being honest about scary aspects of a chronic condition can be hard for parents in the same way that talking about sex is hard. Many parents simply avoid it. However, we build character, resilience and responsibility by being honest, open and having the expectation that children have the strength to handle the truth when it is given in a loving and hopeful way. If your child isn’t mature enough to have honest discussions about life, death and sex, then he or she isn’t mature enough to go off on a week-long summer camp where choices may be made about life, death and sex.   

The way we discuss scary health-related issues (like possible shortened life-expectancy or deterioration of body organs or disease progression) is of course important.  I have written about this extensively elsewhere but here are some points to consider:

·         Ask yourself: Whose needs are being met with this conversation? Yours or your child’s?

·         Consider when and how much information to share.

·         Be open about anything and everything.

·         Talk less, listen more.

·         Show empathy and use reflective listening.

·         Ask more questions, gently show genuine curiosity.

·         Know that children may protect parents by hiding their fears.

·         Always leave room for hope.

3. Set summer camp as a goal to work towards, not as a guaranteed right. Let your child know that when he or she is managing the medical care at home in a responsible, acceptable manner, then- and only then- is he or she ready for camp. This includes initiating the care (without reminders and nagging) and following through properly (without lectures).

4. Planning and preparation are keys to success. Now that my kids are teenagers, before attending camp, they have a conversation directly with their doctors about where they are going, what they will be doing, and how they plan to manage their medical regimen. The doctors help them think through their care requirements including possible modifications in treatment plans as well as special circumstances like heat or altitude concerns. By having the doctors work with my kids directly, with me there listening and giving input as needed, this helps the kids own their treatment plan, build a relationship with the doctors, plan ahead and advocate for themselves.  

Once we have a treatment plan, we provide detailed letters to the camp counselors explaining everything. We also include a daily medication schedule that can be used as a checklist.

When the kids were younger, we packed their medications in daily doses to make it easy for them to grab and run.  

Now they pack their own medications in a way that they prefer (and I double check it to make sure they have everything).  Most recently, they are using a pillbox with each day of the week labeled (which they also use at home).

5. Know that your child will make mistakes and unexpected things will happen. Even the best laid plans can go awry. The key is to be as prepared as possible ahead of time to increase the odds of success. Discuss the “what if’s” so that your child knows where the ultimate boundaries are for safe and unsafe care decisions as well as what to do in an emergency.

At age 14, my son wanted to go to Philmont Scout Ranch, a highly coveted scouting experience. It was twelve days of backpacking in the high desert wilderness of New Mexico with no electricity or services. What they wore on their backs was what they lived on; that and some food drops along the way.

We planned very carefully for my son's trip. My son got his doctor's permission to go and they discussed a modified treatment schedule and things to be concerned about like high altitude and heat exhaustion.  I called the camp to arrange for ice every third day so his respiratory medication would stay cold as required. They assured me there would be access to ice via the ranger’s stations. However, halfway through the trip, there was no ice and the medication went bad so he had to skip it. Jacob knew he would be fine; not an ideal situation but not life-threatening. However, if this was something like insulin, that would have been a different story. He would have needed to stop his trek and return to base camp.

And my point is this: even though we planned, prepared and did everything right, something still went wrong and it all worked out. As a parent, I learned an important lesson about letting go. I was tempted to say "no" to Philmont because of my fears as a mom but I knew that this trip was a trip of a life-time for Jake. If I said “no” because of cystic fibrosis, then he would likely be resentful of CF (and possibly me) for stealing his dreams; he would be in danger of being victimized by his disease instead of learning to live well with it.

Let’s make this clear: Jake is in good health and there was no medical reason for him not to go as long as he took appropriate precautions. That’s one of the reasons for the doctor’s checkup before the trip; to verify this. However, if a child is not in good health or the camp would be a severe risk, then this would be a different situation.

My instincts were right with Philmont. Jacob grew in self-esteem, bonded with friends and adult mentors, and experienced many adventures. It was a peak experience that shaped the amazing young man that he is becoming.  And Kasey created good memories, friendships, and joy in Hawaii.

Both kids have worked hard to earn the privileges of freedom and trust. It won’t be long before they are both on their own; wings spread and flying from the nest. And I know they will soar marvelously. In part because of the practice runs they had at summer camp.