Kelley Gavel, MS, NCC, CCLS

Kelley Gavel, MS, Certified Child Life Specialist, UPMC Children’s Hospital of Pittsburgh discusses the importance of summer camp and the many options available for children with dealing with medical conditions.

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– This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgments when advising their patients. Patients in need of medical care should consult their personal care provider. There are lots of benefits of summer camps for kids, but what if your child is medically fragile or has other special needs? Hi, I’m Tonia Caruso. Welcome to this UPMC HealthBeat Podcast. Joining us right now is Kelley Gavel. She’s a certified child life specialist with UPMC Children’s Hospital of Pittsburgh. Thank you so much for joining us.

– Thank you. I’m so excited to be here and talk about one of my favorite topics, camp.

– Summer camp, in general – what are the benefits of summer camp for all kids?

– Absolutely. So, of all ages, usually camps start around 6. Generally, kids graduate camps when they’re about 16. But, this is a time for kids to just be kids. You know, camps are wonderful because it does give kids a sense of structure to their day versus just going rogue. You know, they were in school and they had lunch at a certain time. They moved with their peers and their groups from something to something. Kids thrive on routine, and camp can often give that sense of structure that a lot of kids need and really thrive on. That, they have swimming at 9 a.m., lunch is at 12, pickup is at 3, whatever it might be. But, it really gives them a structure that can be really helpful in the summer.

– And a sense of independence because they’re not home all day.

– Exactly.

– In the middle of the summer.

– Absolutely. And, not only that, but they’re able to tap into those interests. You know, kids may be struggling in science or something like that, but oh, science at camp might look like a nature walk, and they might love that. So, it’s, how can they pull on those strengths in an independent way, with peer counselors and kids that they might not know at school, making new friends, those social skills, everything like that, and a really safe environment.

– So, summer camp sounds fabulous, but what if you are someone with a child with a medical condition or some special needs? Talk about why you feel they should not be left out of the fun.

– Absolutely. So, something that is always a challenge is accessibility. So, physically, accessible buildings, but also camp activities, like a zip line, or swimming, or anything like that. There are camps that are set up that if your child has a trach and they’re always in a ventilator, they can go swimming. They might need a little extra tubing to get them to the water, but there are places. There are places with accessible zip lines. Can you believe it?

– No, not at all.

– Your ventilator basically gets strapped to a bucket that the child gets transferred from their wheelchair to. It does look like a bucket. I should have brought a picture. And their ventilator gets attached to the back, and these kids go down the zip line just like every other kid.

– And, so, basically we want people to know there are summer camps for everyone, essentially. I know UPMC Children’s in particular offers many camps.

– Yes.

– Tell me a little bit about those.

– Absolutely. So, UPMC sponsors five different ones every year. So, this is, Camp Susquehanna is the first one we’ll talk about. This is specifically for burn survivors. So, these are children and young adults who have had some type of fire in their life – car fire, house fire, etc. – and they’re burn survivors. So, this is an incredible opportunity for kids to be able to see other kids and teens who have gone through something similar when they probably went back to school and no one could relate to that situation. And, so, this happens in the summertime. It is at Camp Westmont in Lakewood, Pa. There is a bus that picks them up around the Pittsburgh area and buses them out, and then returns the kids back.

– Heart camp?

– Yes.

– I’ve heard of heart camp.

– Yes.

– Tell me about that.

– So, heart camp is with our cardiac crew. It’s wonderful. It is a weeklong camp. It’s for UPMC patients with different heart challenges. It is a blast and a half from what I hear. Our Child Life team goes out there. And, another way for kids who kind of fall under the cardiac umbrella, but they can relate to different diagnoses in such a different way. You know, “Oh, I had that same surgery. Oh, that’s coming up for you. Oh, interesting. How did you feel after?” And it’s such an open space for kids to relate on such a different level. All of these camps, a lot of the time they go back to their friends, or their soccer team, or their swim team, and no one can relate. At camp, they can. It might not be the same diagnosis, but at camp, they have endured similar situations or circumstances, and it’s such a safe space for them to develop and grow those coping skills. And, also that self-identity, you know, that my diagnosis does not make me who I am.

– What other camps does Children’s offer?

– So, we have Camp Wakchazi. Camp Wakchazi is specifically for bereaved siblings. So, this is open to anyone. Their sibling did not have to pass at UPMC Children’s. It runs usually in June every year from ages 6 to 16. Their sibling had to have passed at least a year ago. So, this year window gives them space and time to have that initial grief and bereavement time with their families and loved ones. At Camp Wakchazi, this is the one I work most closely with. It is incredible. Kids walk up to the memorial wall for their siblings who have passed, and we had these two little campers, they’re both 6-ish, like our youngest campers. And, they’re like, “Oh, this is my sibling.” Like, “Oh, this is my sibling.” They’re like, “Wait, my sibling died.” “My sibling died, too.” “Oh my gosh.” And it was like this light-bulb moment that they are not alone in this situation. And then they started talking like, “Does everybody here have a sibling on this wall?” And they do. And, it was this light-bulb moment. They’re like, “I thought I was the only one.”

– What a moment. And what extra support in knowing that. Other camps.

– Camp INSPIRE is specifically kids who have different respiratory stuff going on. So, a tracheostomy, a ventilator, or a BiPap machine, or other respiratory support. So, these kids often think, “Hmm, how am I supposed to go to a YMCA camp when I have a ventilator with me?” You know, it’s not the most accessible. Some of these kids can walk with their ventilator in their backpack, basically.

– Right.

– Or, they can have a cap on their trach so they can walk and move without it. But, a lot of these kids are wheelchair-dependent. So, not only does it have to be medically equipped with respiratory and nursing, etc., but also, it all has to be accessible for the machinery, and wheelchairs, and everything like that. So, Camp INSPIRE takes place at the Woodlands Foundation up near Wexford, Pa. It’s usually in the middle-ish July, August time. But, everything is accessible. So, the ratio to these campers is fantastic because you have, you know, one camper per one nurse, per one respiratory therapist. You know, the ratio’s a lot smaller there because these kids do need a lot more help. However, they can do everything. They can go swimming, they can go zip-lining, all of this stuff. It’s a usually a sleepover camp. COVID put that damper on it.

– Right.

– But, it’s really incredible that these kids, I’ve heard from families, you know, they get turned away or everything is, “No, no, no. No, you can’t do that. No, that’s too hard. No, we don’t have that accessibility.” Here, they do.

– What’s our fifth camp from Children’s?

– The fifth camp is Camp Chihopi. So, this is a four-day camp for transplant friends. For kids and teens with liver and intestine transplant. This is at the Emma Kaufmann Camp on Cheat Lake near Morgantown, W.Va.. So, same idea. A lot of these kids have likely been on different kinds of medication. They may need to be extra careful at contact sports or whatnot. And everything is accessible for these kids, not only with their medical complexities but also physical complexities that they can just go and be a kid. And, also, that everyone knows those scars, you know?

– Right.

– When you go swimming, you’re not the only one that might have something on your belly or something that looks different. All these kids do.

– We keep talking. It’s so beneficial for the children. What about the parents? You have to be extra anxious, probably.

– Oh, my gosh. Yeah.

– For these parents to know they’re sending their child to a camp and there is medical supervision there all the time.

– All the time, yes. Especially the ones that are clearly sponsored by a fantastic children’s hospital. So, I know we just talked about five, and those are five very specific and unique populations. There are other organizations. There is one called the SeriousFun Network. This is a network of 30 different camps worldwide. It started with one, and now it’s at 30. It was founded by Paul Newman. And, the whole idea is for a kid to be a kid, no matter what their medical complexity might be. So, the closest one to here in Pittsburgh is Flying Horse Farms out in Ohio. I personally worked at one in upstate New York that’s called the Double H Ranch. But, at these camps, there are, we called it the “body shop.” Basically, it is a place, if a child spikes a fever, they can go stay in the body shop overnight. Doctors and nurses can keep an eyeball closer.

– Right.

– On those kids. They can get all of their injections, or whatever that might be, throughout the day, and then go off. Everything here is accessible. At the Double H Ranch, you did not have to have a specific diagnosis each week. Other camps in this foundation, they do. So they would be, oncology might be week one, hematology week two, etc.

– Right.

– Double H, everyone can come at any time, if you have a qualifying diagnosis, which is really interesting. What I saw is that these kids, their diagnoses may be completely different, but their struggles, or their challenges, or their questions are the same.

– Might be the same.

– Like, “Oh, I thought I was the only one.” Or, “What do you mean? We don’t even have the same thing.” But, you’re relating to the same struggles.

– Right.

– Which can be really incredible for these kids to see because at the hospital, like some of these camps, you are pretty separated. You know, GI is on one floor. But, at camps, you can relate to very similar struggles, even if it’s not the same diagnosis.

– So, how easy or how difficult is it to get into these camps? Especially the UPMC ones: Is there a cost-associated with it? What does that look like?

– They are largely free of charge. Transportation is typically the only caveat. For some of the ones that are farther away, there is a bus provided to get kids out, but that is camp-specific. For example, the camps that I have worked at, it is the parents’ responsibility, or the caregivers’, to drop the child off and pick up. Other camps that are further away from Pittsburgh, there is transportation tied in to help get the kids there and back safely. So, that’s really the only cost associated with this, is getting your kid there. But everything else is free of charge.

– So, where should a parent start if looking for a summer camp? And maybe they can’t get their stuff together in time for this year, but for next year.

– Yeah.

– What’s the best approach?

– So, depending on what it is, I would first start with our hospital website. So, look at Children’s website. Type into Google or the search bar, what you’re looking for, the camp name. And, it will often lead to, like, year-round programming or who to get in touch with. So, if you miss the deadline for this year, that’s OK. You can look at next year. But, they might be, may be able to direct you, one of the camp directors or coordinators, to other programming at other foundations or places throughout the year, just to get your kid familiar and acclimated to going away overnight somewhere new, or with strangers, or something like that, throughout the year. That way, when camp comes, they’re ready to go. And it’s not this whole homesickness and whatnot the first night or two.

– And, so, I can tell you absolutely love it when you’re a camp counselor. And, especially for some of these medical camps, often physicians who treat the children will –

– Yes, they’ll go.

– attend these camps. And, what does that mean for kids?

– I think it’s so interesting to see those caregivers, or those physicians, or providers in an alternate setting. We talk a lot in the hospital about, like, “white coat syndrome.” So, really trying to make the hospital a safe place. But then you see these folks outside of the hospital and outside of that setting, the white coat is off, T-shirts are on, you’re muddy, and you’re dirty, and you’re gross with everybody else. It really humanizes everything. It’s really beautiful to see these kids being like, “Oh my gosh, Dr. So-and-So, like, you helped my brother.” Whatever it might be for these siblings who go. And, it really brings that full circle: that we’re all human, we’re here to help. And we can also have a little bit of fun. Especially, sometimes, these have been really challenging conversations to have or a really scary part in a child or a sibling’s life. And, to see people, again, feelings do come up, things might be triggered, but it really is the human aspect, that we are here, we are caring adults, we want to help you succeed, too.

– Right.

– After camp.

– And, ultimately, what do you think, if you could sum it up, summer camp can bring to kids, especially medically fragile children?

– There is a bunch of data out there that shows that summer camp, the numbers are crazy in the self-esteem. Trying new things, peer relationships, you know, their ownership of their diagnosis, or situation, or whatever that might be. Before and after camp, it is all positive. It is. The numbers are staggering. I will not bore you with them, but if you’re interested, there are lots of studies out there that show just the true benefit. Even if your kid is worried, if a parent is worried, send your kid. Try. Try it out. You will absolutely learn something new about yourself, or new about your kid, or new about your family. It’s the best.

– Well, you’re the best. Thank you so much for coming in.

– You’re so welcome!

– And spending time with us today. We certainly do appreciate it.

– Absolutely. Thank you so much.

– You’re welcome. I’m Tonia Caruso. Thank you for joining us. This is UPMC HealthBeat.

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From nutrition to illnesses, from athletics to school, children will face many challenges growing up. Parents often will make important health care decisions for them. We hope to help guide both of you in that journey. UPMC Children’s Hospital of Pittsburgh is a national leader in pediatric care, ranking consistently on U.S. News & World Report’s Best Children’s Hospitals Honor Roll. We provide expert treatment for pediatric diseases, along well-child visits, urgent care, and more. With locations across Pennsylvania, Maryland, and West Virginia, you can find world-class care close to home. We also work closely with UPMC Magee-Womens Hospital, a national leader in care for newborns and their mothers. Our goal is to provide the best care for your children, from birth to adulthood and beyond. Visit our website to find a doctor near you.