S6:E99 Interview with Shani Thornton, CCLS Pt.1

[Music] [Music] Welcome back to the Childhood Cancer Perspective and thank you all for sticking with me in this journey. One of the major roles that I have, I've spoken about a lot on this podcast and our journey is a department within the hospital that we had no idea existed. However, when our daughter was diagnosed, it became something that really changed our life for the better and has been an integral part and will continue to be and I'll talk about that later as well. Well, my guest today, Shanny has more than 20 years of experience as a child life specialist and you guys have heard me mention that before. So today, welcome to the show. Shanny, thank you so much for spending the day with. Yeah, absolutely. Thank you for having me. So tell us a little, I mean, I'll kind of go into our story a little bit as well, but I want to hear kind of how you got into the role of a child life specialist. What was the kind of the motivation and the drive to get into a field like that, which is honestly not for everybody and it takes a certain special person to be to be a part of that. Yeah, absolutely. I think my journey is pretty organic and I feel like the majority of child life specialists enter the field because we've been exposed to it in some way. So I was a child who grew up with a parent who had a very chronic autoimmune illness. I didn't have the support. I didn't know, but as I continued through college and stuff, I became a recreation therapist assistant. So I was working at a pretty big children's hospital down in Southern California and they had a convalescent hospital that I was working with. So these were kids who were who were living there, um, non-ambulatory, just amazing kids and one of them was referred to the main hospital to have surgery and they were referred to child life. And while I had that role for only about a year, I knew instantly when I was working as a rec therapist assistant that there was something else I was supposed to be doing and I couldn't quite figure it out. So I was like falling around nursing and OT and PT and speech and I was just trying to gather. I was like a sponge just soaking it all up and then once this, this child got referred to child life, I was like, what is that? And they explained, oh, it's somebody who helps kids have surgery. That's all I got. So I went home, I did my Google search and I was like, this is what I'm supposed to do. And instantly I just dove in. I ended up applying to a graduate program. So I have my master's specifically in child life. I relocated to New York City and rest of history. It really truly is an amazing kind of a story of how to get into something. You're inspired by it by personal experiences, which is also the way that we came into contact with it and everything. With our daughter, JC, being diagnosed with cancer, it was in the middle of the night at, you know, in Milwaukee and we're at that point trying to process what's going on and the next steps of what we're going to do. And I remember this woman coming in with a blanket in a book and sitting down next to JC to kind of explain what was going to happen in a way that she could understand and really still didn't fully grasp what exactly they were doing or what they were, who they were, and all of that. And over the next 12 days of that stay in the hospital, we became immersed in it. And it's truly a lifesaver and honestly going through all of this on this side of it and in having that connection to child life, it has really, it's changed your life in a way because it's a positive experience when you're going through a very negative and rough time. And I had mentioned that it really isn't for everybody. It takes a special person to be able to kind of not disassociate your emotions at that moment with a child or a parent or a patient, but also you have to be able to kind of be there for them and maybe you go out in the hallway and you break down afterwards because of what's going on. And the ones that we have met and are still in contact with today are truly those special kind of people that I don't think we could have gotten through this journey without. I'm glad that they were there for you, especially when your families are going through crisis, you need that person to can navigate it with you, right? And especially to help explain to JC what is happening, what she's going to experience, and to decrease a lot of the additional trauma and anxiety and fears and give you guys the supportive tools to like manage and continue to cope with it. Yeah, I agree. It just definitely takes a special person and we all have our way of processing. Sometimes that means you know in the closet or drive home, you're crying or you're just you know have really dark sense of humor or you have your colleagues and you just try to process and vent it, but it's it's an incredibly rewarding position to have. I feel incredibly honored every day to have this role and I feel like it's it was meant to be. This is like something I'm supposed to do. I couldn't imagine not being a child life specialist. And I think that that sentiment carries with every child life specialist that we have come in contact with from both hospitals that we were experiencing with JC surgeries and her treatments and things like that. The most the most special one and I hope one day that I can have her on to tell you know her story and her motivation her name is Ashley and she is incredible and actually somebody that JC considered her best friend because that was somebody she was excited to see you know in a time when nobody wants to go to the hospital but they become your friend they become your family and it's you know again I never throughout the entire journey that we had did I ever see one of them cry shed a tear they were very good at controlling that however in the in the end you know when we were when we were told there's nothing more we can do I saw that emotion even from behind the masks I could see that emotion because you're real people you're real people with real emotions and you have you know you have families at home and you you see these things every single day in it and it affects you you just have a really really good ability at like I said come kind of compartmentalizing it to know when it's right to let it out and when it's right not to it's you know to say that at the department in general child life specialist as a whole to me are not appreciated and paid enough I think is an understatement and that's because of everything that they provide it's it's so much more that chemo treatment it's so much more than you know a diagnosis plan it's it's you're providing such an emotional and spiritual service to not only the patient but the family it's I just I can't say enough about it and I guess I just have to say thank you for what you do and for the entire you know child life atmosphere that holds the whole thing that you never know existed we would never have made it through like I said we never in a million years without those people that's a special for you to say that we appreciate it child these officials know that families get it we see you guys during the darkest times and where there's that kind of guiding light through it not to try to even fix the situations it's really kind of meeting you guys where you're at sitting in that muck and then at your pace moving through right being able to understand these emotions how to express them have really healthy coping skills but absolutely we're affected I have an entire you know little shelf here behind me and it's filled with all the little trinklets that kids have made and pictures and we bring all of that home at every single family that I know that I've worked with and I'm sure the other child I especially sub worked with they make a footprint on your heart like forever you're forever changed I think I look at life very differently I parent very differently and it's because the families like you who've allowed us to come into your homes and into your lives and to make that impact so that we can help you through the most terrible times but do it through dignity and respect and a lot of love and support absolutely and I can't I can't say enough I mean I really the praise as I can sing is is not enough and before we go anywhere else it's like I will also say that my daughter our senior in high school is going into child life because of what her sister went through and how she was impacted and she is dedicated to this it's something that you know your kids when they're young I want to be this I want to be that and you know it changes every year I know I did it right I think we all wanted to be cops and firemen growing up or cowboys whenever and she has not wavered from this one bit and it's it's already looking into where she's going to do studies practice comes and internships and all these things that's it really is incredible so with that being said you know kind of walk us through maybe like a day in the life maybe I don't know if there's a typical day in the life but a day in the life of a child life specialist yeah it's they're all different so I'm actually not even in the hospitals anymore so I'm in private practice and I serve families in the home so I'll give you two perspectives if you're in a hospital your your day-to-day is going to look very different you basically go in you kind of get your senses as to who are the patients on the floor are there any new admissions do you have any or any of these kids getting medical procedures is there anything that happened like a crisis overnight and then you start to make a priority list because you usually have a lot of kids to one child life specialist. So that's one of the unfortunate parts is that there's not a enough of us working, not that we don't want to work. There's plenty of child life specialist. There's just not the programs are just not large enough. There's not enough funding to hire us, but you then have to kind of have your priority and you go in and you check in with those families who are the ones that are the most critical that you need to see to get in to provide those interventions. It could be preparing them for a medical procedure. It could be helping them through a procedure. It could be doing bereavement work or end of life care and then it could be running a playroom right after of you know you know five or six kids in there. So you literally are bouncing back and forth. You're also having to do your rounds and you're meeting with the medical team members. There's a lot of communication. There's a lot of documentation and then there's a lot of like little silly things that have to get done but are not really where we want to go. Like you know cleaning cleaning toy supplies or like maybe making a bulletin board where we'd rather spend some of that time in patient care or working on bigger, bigger projects. They're also child life specialist. Sometimes they're today, day-to-day might be you know a special guest coming in and so then you're kind of walking them around to introduce them to to the kids or you might be throwing a party. You might be throwing a birthday party for our kid. So it's very different and it really depends on what units you're in or if you're just kind of a floater and you go to lots of different units and then in-home services that's what I provide. I don't have an office space so my day looks like driving to families homes. I get to come in and get to sit whether it's at their kitchen table or you know in their play room we have the pets there and we are doing our thing. So I have a lot of kids that have a very large pediatric oncology population. I work with a lot of children who are coping with just other diagnoses. A lot of siblings that I have so whether they have a child who has or a sibling who has cancer or another illness and then I work in hospice. So I contract with a few hospice agencies and I see either those pediatric patients or the children of the adult patients. So I'm working with them and supporting them and educating them on what's happening to their loved one and we're doing a lot of memory making and then I also do a lot of grief support. So bereavement work I have a lot of families that I we just continue to work through all of that grief and so I'll through play in our creative arts and just giving them that space so that they can feel safe to process everything and then express it in a really healthy way. Well thank you for for explaining it from both perspectives and to be honest with you I've never I guess I've never heard of anything outside of the hospital. So how do you how do you how did you become doing this how did you become how did you come to be doing this in a private practice manner and how does how does that differ really from separation from the hospitals are still communication how do you how does that work? Yeah it's one of those things where I've been always a person that kind of thinks outside of the box and tries to just do different things so when I was working you know I became a mom and at the time we were in New York City so it was really hard to my entire paycheck would have been paying for child care it didn't make sense for us so I said you know let me just stay home but I have such a love and passion for child life that like I had to fill the cup some way so it kind of I started organically do it by I was volunteering as like a bereavement facilitator like twice a month for a grief group I created a blog called Child Life Mommy at the time where I was just providing a lot of resources for parents on like how to blend both child life and parenting together like how do you how do you prepare your kid to go to the doctor how do you help them take medicine just simple things like that and then that kind of continued to grow I wrote a children's book because even my four-year-old at the time who I prepared him for everything he kind of had a little bit of an anxiety because he they needed a urine sample and he was like what I was like I got him through the blood draw I got him through the vaccine but he panicked on that so I was like you know what I'm gonna make a book I'm gonna make a book that has real pictures and it's the language from a child life specialist and so it's all these like little things where you're still doing child life work but it was in a community setting and then from there I got my first referral to actually work with a family in their home and the minute I sat down on their floor and it had a two-year-old sibling a four-year-old who had been hospitalized for six weeks and at the time it was undiagnosed they did not know still what was happening it's so much medical trauma we were just doing medical play and like every light bulb was going off on my head and I was like this is what I'm supposed to be doing just like the same feeling I had when I discovered child life I was like okay this is where I need to be I need to be in families homes and I just started to build the practice so it was during a time two where a lot of there wasn't a lot of child life specialists doing private practice so I got to be kind of those part of that pioneer group where we were creating like a task force which created a committee for our association for child life professionals and then you know got to be part of writing documentations to make sure that child life specialists who were going to do this are staying within professional ethical boundaries I got to write a chapter and co write a chapter I should say for an entire book for child life in community there's a lot of different settings for child life are outside of the hospital so we got to start to kind of create these things where child life specialists who are interested in going to the community now have access to and kind of like know that the how to but I would definitely say for child life specialists you should have that experience in the hospital get get that worked because it you can't just jump from graduating have your internship and they're like oh I can't get a job I'm just gonna start a private practice we're like no no go to the hospital start there you need to get that experience you need to be in positions where you know doctors are kicking you out or you've got the nurses that don't want anything to do with you like you have to be able to learn to communicate and advocate and work as a team because those skills will actually help you when you do go into the community because you're kind of out on your own like I don't have anybody it's just me but because I have had that experience I've been able to create partnerships with gosh I have like five four or five nonprofit organizations that I partner with they actually pay for my services to work with families that are under their under their services so it could be pediatric oncology could be grief it could be children of adult patients it gave me that drive to be able to to go out into my community and communicate to hospice agencies and now contract with them too say hey you don't have this service and you've got a lot of adults who you know have children in their home and they're and these kids don't know what to do you know work with me I will come in and I'll support these kids and they start to get the feedback from the families and so they are just starts to you know go in the right it go right in the right path but that's just kind of how it's expanded or working with schools you know if there's like a trauma a traumatic event maybe a student has died or a teacher and the schools are like we don't even know to do how do we let me come in I'll do a whole presentation we'll do therapeutic activities to help these kids feel seen how help them to mourn and express themselves in a really healthy way and give them a stronger toolbox for future things that might happen I think I just think that it blows my mind how expansive now this field is and can be outside thinking outside the box outside of the inner four walls of a hospital or a medical facility and now you can be in the community because to be honest with you and our own personal experience the home is so healing just by itself just being away from the medical side of things and no matter how much you love your doctors and and the nurses and stuff it's being away from that can heal you so much inside both as a patient and as a family so to have that ability and and yes I do agree you know like start it start you know doing the work at the bottom and work your way up to something like this you know get your experience in there because you know yeah when you're in the hospital it is a team you'll probably you may have more than one child like specials come in at a time and work together and bounce ideas off each other and things like that so you are essentially now kind of you know you're doing it on your own and not having that direct you know inner ear feedback at that moment so you know it is definitely get your experience and but this is this is amazing that you have that expansion now that can really kind of cater to to a group of people or a population that may not have that ability to go outside of the home or may not have that that ability to to be at the hospital whatever the case may be and now they can still have that service that is so beneficial yeah absolutely and I think too that was one of the reasons why I never wanted to get an office is because I'm like they schlep their stuff all the time to clinic and to hospitals in the emergency room I do not want a family to have to do that one more time for a session let me make it easier let me come to them and that's been huge and for those who don't live in my area or even kids who are their neutropenic and they're like we really have to like lock down on germs I'm like let's do virtual like we can do virtual anywhere we learn I mean that was one thing we learned about COVID you could really you could do tell the health anywhere. And so we do that. And you can still be able to provide those services to families or to even not even just the kids. Like oftentimes too, I'll do a lot of consulting with parents. Like we're having sessions together and I'm giving them all the tools to like how to support their kids. Or this is the language. Or they're saying this and that. And how do I do that? Okay. And we go through it all. We normalize it. And just meeting them where they're at. So it is really taking child life from that chaotic sterile environment. And you're bringing it into home, which it is so healing. I love going in homes. I'm like, have dogs on me. They're cats. Like they join the sessions. It's a very relaxed. And it's a great way for kids to process. Like they go home. I mean, you've seen this. I'm sure with your own family. They go home and they have to unpack. So much stuff that happened. Though it is nice to have that safe space at home. Yeah. It definitely was a huge safe space for us. And I think we noticed multiple times coming home from the hospital. The healing that would take place almost instantly, just being in your environment around your family, around your animals, around sites, sound smells, everything that are comfortable to you. You're almost holding back getting better when you're in the hospital because you just-- you don't want to be there. Like you're not happy there. You're stressed. And to go home is so incredible. So to be able to provide that service, I think, is amazing. And I hope that the field honestly just continues to expand in that way all over the place. I hope that it becomes like a blueprint. Because it's not to take away anything from the hospital. You need that environment to build the character and the experience of all these new child life specialists that are coming in. But to have that ability, knowing that it's a possibility to provide a service outside of it later on, I think it also is another huge motivator. But for specifically for that, what can-- we've got a whole-- like I said, my daughter 17 now. She's going to be graduating this year. Well, yeah, she'll be graduating and going off to college. And this is what she's going to be studying. What types of classes, courses, education should potential child life specialists and be looking into? What type of things should they be focusing on? Yeah, that's a great question. It should be so proud of her that she's even looking to go into this. It shows so much. This-- the siblings have this empathic, older soul. It really does change them when they're watching their sibling go through something so traumatic that they continue to hold their legacy by that. So what a beautiful honor that she's doing. But yeah, as far as what it is, the roadmap to get to child life-- OK, here's the good bad and ugly side of child life as a student-- it is incredibly impacted. There are more students than there are child life internship opportunities. So that's the one thing that every student should know going in. It is not going to be an easy experience. You've got to know you're going to go in. You're going to have to have some grit because it's going to take-- it's going to take a lot of effort to get to that finish line. That being said, there are things that you can do. Having the opportunity to volunteer with a child life specialist, whether they're in the hospital or in the community, huge, because you have to have volunteer hours. So if you can get into a child life program in a hospital, go for it. Courses, as far as what is required, is you need a minimum of a bachelor's degree. In some sort of field that's related to child life, so it could be child development, it could be psychology, might be human and health services. Some programs will actually have child life, or they'll have some child life courses that you can take. There are a lot of colleges that don't those. You just kind of take your course load. But then in addition, you have to take at least 10 courses that are child life specific, and that's all listed on the ACLP's website. And I think at least two of them have to be taught by a certified child life specialist. But there's a lot of online programs that students will do that they can complete that. Once that stuff is done, then the next jump is the requirement is the internship. However, because it's so impacted, a lot of hospital internship programs will not accept a student unless they've done a practicum first. And a practicum is essentially the next step after a volunteering. So you get your volunteering. Practicum is like, you're still volunteering. Everything is unpaid, but you're shadowing a little bit more of a child life specialist. You might have a couple of little assignments to do. And then your internship is a 600-hour internship under the direct supervision of SCCLS. ACLP, the association, has changed things in the last year. So it used to be required under a hospital experience of an internship full 600 hours. Now they've kind of opened it up, and they said, it could be anywhere, which is brought up a lot of conversations within our field of like a lot of us are like, you should have a majority of it in the hospital because that's the baseline. But that's-- that is what it is. That's what the requirements are. And then once you get that done and you've completed your internship, then you sit for your exam and it's a certification exam. And then once you get that done, then you kind of just hold that certification. So you have to continue to do education and you submit that every five years and you hold your certification. So it's coursework, a minimum of bachelor's, child life coursework, practicum internship certification. Yeah, it's a lot. A lot, a lot. Demanding, but necessary to get you ready for something like that. To be honest with you, that was-- I think it was a little bit of a shock to be honest with you when we went-- we actually traveled to the hospital here in Green Bay where our daughter was treated to meet with Ashley, our child life specialist friend, and confidant there, and to kind of get her insight on everything. And it was all the same. There's a lot of work. There's not as many places to put the people that are going through the courses. It's going to be a battlefield, really. I mean, to get into these places, I mean, honestly, her goal would end up in that hospital in Green Bay. Is that a possibility? Sure. Is it going to be anytime soon? Probably not, because again, they're looking-- and she's even-- we were even told. We're looking for this. This is a requirement we're looking for to even take you onto our team or give you a possibility to volunteer or anything like that. So it's a lot of work, but the best part about it is watching our daughter be so dedicated to doing it. That she's already looking at hospitals. I think she looks at Texas children's and things where she could do her practice comes in internships just because she wants to be ready. So she's doing the due diligence and the work, knowing that there's going to be a lot of work. But I think she also knows how rewarding it's going to be in the end, because we go to the hospital and the child life specialist or they've got cool T-shirts on and they've got badges and they get all this fun stuff. Wow, you get to walk around and play with toys and have fun all day. But look at all the work it took for us to get here. You have no idea what it takes for us to do all this work. But then to know that there's that amount of work for it, I think that it means that much more, because that means if you were able to push through it and get to that finish line, then that proves your dedication to that field. Yeah, absolutely. It is. And I'm glad that Ashley gave you guys the honest route of what it takes. The unfortunate part is that there's just not enough internship spots. So you can have 100 applicants who've done all of the requirements for maybe one or two spots at a hospital, 100 applicants. That shows you that a lot of people are not going to be able to get those spots. Oftentimes, students are applying all across the country, all different places. That's really hard for people, too, because it's unpaid. It means you have to relocate. You have to figure out how to save money or maybe have some sort of side job while you're doing an internship if you land it. As our programs are-- Child Life Specialist 2s, we're not abilable-- we're free. We're free service. There's no billable service for child life, which is a great thing, because if you have a program in a community hospital in this child life, that's great. You don't bill insurance. The downfall of that is hospitals or businesses. They want to make money. So they're not really investing into child life, because they don't build the insurance for it, which causes a lot of programs to be very small, because a lot of them are based a little bit on hospital budget and a lot more on philanthropy and grants and donations. But that also causes struggles, because you might have a really large hospital, and you might have a very small child life program. And those child life specialists have a certain amount-- a certain amount of number of years under their belt before they can be an internship coordinator to take on students. So that takes a little while, and also takes a little while getting your program ready to take on interns. But the other thing is because our field-- it. it's more dominant in women, we have babies. And oftentimes then they go on maternity leave. So if you've got an internship coordinator who then goes on maternity leave, that next spring or fall whenever they do their internships, they might not have it open because there might not be somebody who can take on an intern. So there's constantly their shifts and changes. So for students it can be really frustrating because you're like, I have a list of all these hospitals, all these internships, but it's not consistent. It changes throughout the year that maybe they're offering an internship and now they're not. And it's because hospital programs are small, sometimes people are on maternity leave. And also it depends on the programs. Sometimes there's a lot of like toxicity in a program or I mean you've already mentioned it too. Like you know, like our pay is not great and that can be really hard on childly specialists. So a lot of them leave the field. They might try to find something else in a similar related field or they might just take a pause for mental health or they might go to another program. So all of that makes it really hard for students. And I could tell you from child life specialists perspective, we don't want that for students. We want them to have access. We want them to grow. We know we need new blood coming in in order for this profession to expand. It's just unfortunate that every year it just gets harder and harder and harder. So what's kind of where we're at with everything though? Yeah. Do you notice just or in over the course of your time, both in the hospital and now kind of seeing it from the outside? Do you notice a very high rate of burnout amongst child life specialists? Enormous. I mean it's always been that way. I mean even when I was a student forever ago, they would talk about compassion, fatigue and burnout and how you need to be able to have really good strong health, you know self-care tools. But I think that where the shift has come in and it's much higher now is that the students and what they have to, the hoops that they have to jump through to become a certified child life specialist, like they're already getting burnt out before they enter the field. Right? It is mentally exhausting. Like you keep trying to put yourself out there and then you're just not getting an internship. That is just takes a toll on them. So there's that and then I also think that the pay is really not great and it's you know living expenses is increasing. Our salaries are not and you have that along with you know some hospital administrators who really don't care about our programs and don't really help support us if you don't feel that support and you don't feel the income to justify it plus what you're dealing with. It is the psychosocial emotional support that we provide is daunting. I mean we are really, it's not just blowing bubbles for kids and helping them through a blood draw. I mean we are working with patients where we also yes we become attached to and we really care about them and we're watching them go through really awful things over and over again or we're losing patients right. We're watching codes and you might have a day where you've had multiple losses or really traumatic things that you're witnessing and you're trying to provide that support through. It adds up. I think that with the combination of it all that's also why there's a larger increase on you know burnout and compassion fatigue. It all makes sense and it's like I said it takes a special person and so I look at it every day and you know and think how could you how could I get up and do it every day and not essentially bring it home I guess and not you know you're dealing with not only the actual in person your day-to-day stuff but then you're also dealing behind the scenes with with income and hours and everything else it's going on so it's it's it is a shame and I hope that I hope that at some point kind of gets better I hope it becomes a more you know one of those fields that just becomes like the world wraps around it says you know what we need to focus more on this for the budget needs to handle more of this and it needs to be not one person for 10 floors it needs to be one person per floor it needs to really become a field that is inviting and not scaring people away in a sense and you know the other thing which is it's kind of insignificant but at the same time you you mentioned something about it and I was thinking about it I've never personally seen and I don't know what this means a male child life specialist or is is it an anomaly in this field in general and and on an I'll ask or do which ones and you can be honest which ones last longer they do exist there's not a lot of them but they are there and I think that they also bring so much to the table I think it's amazing to have different genders because sometimes you you've got kids who are going to actually connect with you know a male more than a female so I would hope that we can continue to expand it and I love the fact that like I think that's the heart of child life specials too like we love this field like we love serving families that is like a true true honor and we get that love back from families so much and then from some of your team members as well but we want people we want the administrators we want larger organizations to see that two rappers around to see like do you notice that when you have a child life specialist we've decreased trauma that the kids are actually coping better maybe they don't need as much medication maybe they don't even need anesthesia because we've prepped them for it so it's decreasing things for them and they're getting discharged sooner too like that's all because we're coming in and doing the things where you don't need to have have medication or have children being held down like there are things to do where we can make it a lot much better for families to experience and there's a benefit you