Rachel - 9/25/2020 👍

 On Friday September 25 I had an interview with my aunt, Rachel, a regional parent program coordinator at The Hole in the Wall Gang Camp.  

https://emailric-my.sharepoint.com/:v:/g/personal/npatenaude_0387_email_ric_edu/EQs-CyT5SElLoKdYv9SshTIBz-YFP2A4p-LMAuHt0Dieqw?e=uQcarb

This was my first interview for this project. Corinne and I wanted it to someone who I already knew and felt comfortable talking to so having it be a close family member was perfect.  Even though she is not technically a child life specialist, her work with children and families fit well with this project.  Looking back on the recorded video I found that interviewing my aunt first came with both pros and cons - 

Pro:

• I was very comfortable with her, almost too comfortable.  
• It was good to have someone who wasn't going to judge my first interview.  
• She answered my questions and gave me tips on how to better segue my questions for a better flow and therefore it was more conversational rather than just be a formal uncomfortable interview with questions that are all over the board.  
• After this interview, I felt as though I wanted to add an additional question for the interviews that reviews what the interviewees process was to obtain the position they are in now.

Con:

• I felt funny about asking her certain questions such as how she felt about her white female identity and how/if it impacted her work.  I can't explain why I felt a bit uncomfortable about it but I did.
• As I said previously, I was almost too comfortable during my interview.  I felt that I should have been more professional and less laid-back.  

Transcript of Interview:

In your own words, how would you describe what a child life specialist is and what they do and all of that? 

A:  I think of child life as a liaison between sort of educational, social, emotional and medical wellbeing. Like they wear all those hats in coordinating a child's experience in patient.  They coordinate a lot of like clinic work and sort of monitoring that fine line between sort of social worker and teacher and nurse kind of in. That's in my experience. And I'm sure there's a lot more that goes into it.

How did you become involved with it?

A:  So my work at the Hole in the Wall gang camp started off in our alumni programming, which worked with campers who had a diagnosis had and had since turned 18 and were sort of navigating the transition from pediatric to adult care, which has become a little bit more gracious, but was pretty abrupt experience for a lot of kids, moving especially from a child or a pediatric floor and having diagnoses that involved a lot of love and care and emotional support and all that stuff there.  Yeah. And then all of a sudden they were like, oh, now you're 18 and now you're stuck in a wing with geriatrics and you're an adult. So so that was sort of my baptism into the relationship dynamic between patients and their child life specialists in just trying to figure out how to best support them and what their needs were. So in sort of trying to do my job well, I interviewed a lot of the people who were supporting the constituents that I was working with.  So people who had been with Camper's but patients for a long time and and then were like, we have to say goodbye. And we don't have systems in place for the emotional ramifications.  And a lot of our campers early on had some pretty brutal side effects from their treatments. So lots of radiation and chemo and sort of really rustic beginnings for those folks that are now in their mid 20s, early 30s treatment where now is like super targeted and not so invasive, created like some really big roadblocks. So just trying to learn a little bit about that through the help of some of the people that have been serving them for a long time.

Right. So do you primarily work with just cancer patients or is it any diagnosis? 

A:  No, we specifically work with oncology, hematology, metabolic and rare disease. 

OK, so pretty wide range. 

Yeah. Yeah, I know. All right. 

Can you tell me about a time that you felt really successful in an interaction with either a family or child in particular, or what works for you? 

A:  Works for me?  Well, lots of opportunities that I feel like have been impactful in feeling like doing good work. But in the transition from my title as alumni coordinator, I moved into a parent programs role and that that job entails interacting with parents and caregivers, usually when they're newly diagnosed or new to our programming. And so I get to work with people sort of in the thick of some of the really, really tough stuff.

And I think that the success of the programs that I offer is not based in any part due to to me, it's successful in connecting folks with other people going through similar experiences. So the the isolation and the difficulty that comes along with navigating a child with an illness often really separates folks from not only their peers, but also sometimes their family.

Like it's really hard to have your super crazy understand why you can't come to her birthday party because you've got a random fever or something. And so the opportunity to connect people with other people in a really safe environment under a sort of the umbrella of all the beautiful things that camp represents has been such a huge batch that I get to wear, sort of, because I think I get to facilitate these events.

I often joke that I'm like a glorified party planner for people who need a party the most. That's kind of my job. That's a damn good job. Yeah. Yeah.

So. Has you any your kids have like covid, like, have you had that be a part of this? 

A:  So interesting right now is we are obviously none of our programming is in person.  We are just gaining access back into the hospitals. I think Yale New Haven is our first entry point and then Boston Children's will start putting staff back in. But and Hasbro, I think, are the three right now that are just allowing non-essential personnel back in. So our hospital outreach teams are slowly sort of building back into kids lives. But we've had we've had people that have had it.  We've had parents that have had it. But we we've been taking it like just a ton of precautions.  

It's actually tomorrow I head on the site and we are hosting is our second. Our third. We're calling them Fall Family Fun Days. But the supercute because the facilities are so largely outdoors and the experiences are all sort of based in in experiences that we can control the safety factors we are hosting between four and six families on site.

And then they sort of navigate through our outdoor spaces and they get to do boating and fishing and archery and but those are I'm getting weekly covid tests to participate in that. And then we are taking just a ton of precautions.

So the really cool thing is that our medical director, our our founding medical director was the head of oncology at Yale New Haven, and then his predecessor was an amazing woman. And so we just had this lineage of really, really intentionally thoughtful people who want to ensure the safety first and foremost for our kiddos. So knock on wood that we've been navigating in entirely remotely and able to recreate a lot of the value programming remotely. 

Now, how are you able to do that, though?

A:  So, Maija, so certain components of my job are not happening, but what I've been doing is hosting a weekly cabined chat with what we call them. And essentially they're like a guided opportunity to either learn something new or share or have a topic of discussion. And then we do like breakout rooms and folks get a chance to see other people and they get a chance to sort of emote and cope in a safe place. So I've been hosting those since March.

And then the programming the other programming that we've been doing has been all mailing series. So instead of a summer program for the kids, which obviously we couldn't do camp in a traditional way, they could choose to opt into a mailing program that provided some online components. So like if they joined the cooking mailing series, they got Dorda all of their grocery items and then they had different guest chefs that came and did fun things.

They got different cookbooks sent to them by some of our partner organizations. We had another there was like a S10 mailing series and all of the things that the kids needed to participate in those. And then there was some online Zoome classes. So there's just a number of different opportunities. We have an arts one.

We had a photography one where the donor gave every kid a digital camera and like all the equipment. And so there are a number of really cool opportunities for them to engage with other campers and sort of get some of the perks of camp, which is a lot of areas of expertise that are designed to fit their in level. Yeah.

So have you found that because that stuff sounds expensive? Have you found that? There is like a social economical gap.

A:  I mean, I think our fundraising team is definitely kicking it into gear because so many of the different ways that we fund race throughout the year were in-person events. We just hosted our gala, which is a huge fundraising opportunity for us, and we hosted it virtually, which is sort of a very interesting sort of a blessing in disguise, because one of the difficulties of our gala is it's it's on site in Ashford for most of the time.

And then on every five or 10 years, we do it in New York City and then we don't have a problem getting celebrities. But it's also really tricky to get celebrities come out to the middle of nowhere, Connecticut. But when we were doing it remotely, we were able to pull in all sorts of everybody big names. So like Jonathan Groff from Frozen sang a song with the kids and Hamilton, obviously. And who else? Carole King just took a bunch of really cool, beautiful people were able to do it remotely from the comfort of their own home.

You know, we were in a hiring freeze. We're doing all of the proper hunkering down and being fiscally responsible because we are 100 percent donor based. So. But I think the generosity of people's spirits, especially in times of need, when you recognize maybe just how it could be a whole lot worse, people are still being super generous, which is lovely. So you haven't found that it's impacting.

Like we're having to get creative with programming for sure. Like it just costs a lot of money to mail things. And that is it's a huge it's a huge budget dive.
And the other interesting thing is that we're all trying to figure out what was, you know, Elsas, Blasio. Trying to figure out what the fault, like we're trying to put together budgets for twenty, twenty one and that's just ship building a really great house on shifting sands, right? Like, we don't know. You have anything. No do. Yeah. So trying to get creative and also be sort of fiscally.

Responsible because who knows what it's going to look like. But also the need is there are families that are already struggling under like insurmountable medical debt or job insecurity or food insecurity, like all of the things of feel like there are certain folks that are just like they just get kicked when they're down, like their kid gets sick and then they lose their job. You know, there's an attorney going, yeah. So it's definitely, definitely on the forefront that we have to continue to serve.

We just have to get a little creative with how we do it, how it's happening. Interesting, so but it totally sucks, but I mean, I think most nonprofits, we're very lucky we didn't hire any part time staff like our summer obviously is staffed by college kids and. Yeah, and part time work and all that stuff. And we had to hunker down and didn't hire anyone.

But we have I mean, God bless our board of directors, been able to keep everyone who had a full time position. So that's amazing. I know. But it also makes I think you really want to earn your keep like I think more than you realize how significant.

So it's been an interesting acclimation to try to take my job entirely online. Yes, you know, it's just try to constantly reinvent the value of of interaction, which is great, you know, is really what it's all about. It's about community. So can you recreate community opportunities in in Zoome format? Right. Can you and I'm I'm working on I'm working on that. Well, I'm sure you're doing a phenomenal job. Thanks. Because they keep coming back. I know. I know.

Well, you know, I have to entice them. I have to dangle the carrot. I keep bringing on like guest speakers. Nobody really just wants to talk to me. But you. Do you ever hear it?

What advice would you give to somebody starting out their life career? 

A:  There's so many things that I think of when I think of child life specialist, because I think it is truly one of those difficult it's such a difficult sort of place to put yourself and it's such a rewarding place to put yourself right. I think one of the things that I feel like is really something that I've learned working with this community now for the seven years that I've been at home, normal is that illness is an entire families experience. It's not just the kid.

And I think that there are so many sort of knee jerk reactions to providing support for a kiddo that the entire web of a family, the way it's woven together and the many different ways that families exist in the many different supports, you know, like an auntie can be just as valued as a parent.

And so I think just learning to meet and greet a child and their family with the ability to sort of learn and accept what they're going to need and then continue to read that and put place value on the experiences that the parents are having. The siblings are having just as much as they can, because if mom ain't happy, ain't nobody happy kind of philosophy.

But I do think that my experience with parents and caregivers is that there's a certain sort of sacrificial quality of life that so many parents and caregivers immediately just like roll over and play dead to their needs. And I think that it results in a lot of like families falling apart, as you know, and like things that really take a toll on the well-being of a child's future and a child's experience.

Like if if a family is healing together or going through the test up together, then I think that there's just so much more hope in place. And so I really I really feel like that's something I've had to learn. And the stories and the experiences that I am so privileged to be a part of always remind me how important it is to have it be a full family and just an opportunity to for everyone to weigh in on what that experience is like I think is so important.

And I think in the age that we're in right now of really trying to be respectful of cultural differences and family dynamics that. You know, the sort of magic of camp is that there are great stories of healing happening outside the norms of regular medicine, like we know that one of our taglines is like a different type of healing.

It is. But I truly believe that we're sort of as a culture on the on the precipice of understanding that, like, wellness activities are really important to the mental well-being of patients and that silly little things like aroma therapy or like all of these sort of the willingness to see things that might play into the overall well-being of a patient.

And I think a really big part of that is meeting a family where they're at and being open and not afraid to understand what their family dynamics are. And I think culturally, like, it's a really, really beautiful thing to understand that every parent, regardless of their race or ethnicity or anything, loves their kids. Like that's like the bottom line for every parent. Right.

And so as you are in a hospital, I think that that would be the the thing that I think is going to get you the furthest and success is being a good reader of the room when it comes to what the family dynamics are and how to welcome everyone into that really scary, really difficult, really traumatic time. Like you're going to end up opening the door into some crazy shit and like, how do you feel of being welcomed into a room because you are accepting of everyone I think is going to lead you to the best success.  I think I don't know, but that's my experience. 

So have you had, issues with you being a white woman. Coming in and helping families have you without a thing?

A:  I think that I think that the overall I'm I'm sure I have probably offended people. Like I'm not so naive to think that I have not insulted someone in some capacity. I don't think that I've ever led with an assumption that I know how everyone's operated or what the best approaches.

I think everybody sort of makes some gaffes every once in a while with, you know, and there's a few sort of like open my foot, insert my mouth, things that I can think of, but that I constantly sort of learning from. So a lot of interest in just being curious and being genuine.

Like, I think that that is the place that I try to come from the most. Like, I don't know how this works. So tell me, like, silly little things or like we would do an opening exercise that required, like, silly handshakes or something, and then realize that two of the women that are with me are Muslim and they don't touch men that they're not married to do. And so, like learning to sort of roll with the like, oh, you know what?

We're going to shift gears and like, let's do that without calling anyone out or making anyone feel uncomfortable or highlighting these, like just trying to be respectful of those changes. But I think that curiosity is really. And curiosity from a place of genuinely wanting to learn, like what's going to make everyone feel comfortable is what I try to do. Am I an ass sometimes?

Well, yeah, but I think that the sincerity of your intentions, if you're there to truly do your job, which is to support a family dynamic like not that there's room for mistakes, like we all want to try to be our best educated selves, but we're not going to know everything. I think that's sort of where I come from, is I'm willing to learn and I want to be aware, but I'm also going to screw up. 

So my next question is, if there was something that you'd like to learn in your fields, what would it be?

A:  Oh, for sure. Well, I have grand intentions. When, when, how you can get all her homework assignments in without me flogging her. Good luck.

Yeah, I think that what I will probably go back for. So I have a degree that has nothing to do with what I'm doing and I am functioning on a lot of gut instinct. But I think I'll probably go back for my MSW. I think that. The areas that I found that I am. Deficient in are those really tough scenarios where you're like, what is the best protocol that's going to keep everyone safe?

And I think I know what it is, but I'd really much rather have I'd rather have the knowledge. But I think that a continued awareness of how to truly support people in ways that isn't going to hurt them more. And I think that that that is is one of those life lessons where I think the best of intentions can sometimes go awry in how we respond, especially to people in trauma, or I tend to be a bit of a bleeding heart.

I'm a I'm a real public crier. So fine tuning the skills of being a support in a crisis situation, I think because I think that kind of level headedness is really what ultimately is the greatest gift that you can give people in times of crisis is knowing how to handle yourself, having the disassociation to not like want to out your heart and fix the situation. Yeah.

So I think that that will be my next move professionally. And then I think there's just a lot of continuing ed around. I don't want to say. Politically correctness, because I think it's not that I think that term is supercharged for a lot of people, but I think that humanity truly correct, like I want to be educated enough to greet people where they where they are and respect like what that scenario looks like for those different cultures and those different languages.

And I think I speak fluent Spanish. So that is a big help in having a bit of an insight into how to gain some camaraderie very quickly is speaking a language. I always think that's a really good a good dynamic to have under your belt. A good skill set to have. But yeah, you know, so many things always need all the things I'd just like to be to, I want everything know, I always joke.

I'm like, this is not group therapy because I have a degree in art. So, like, let's not pretend that this is anything other than us hanging out. Yeah. Art is very therapeutic. Yes. Oh no.

It has great skill sets, like I am the queen of crafty distractions or like putting projects together that I know people's hands are going to be busy so that sometimes their mouths, like when you're working on something and I'm sure you find this in your life too, like if you're doing something that distracts from the larger picture, that often you can open up that chain of communication that works with adults to like get some ladies around a table beading on. And then the conversation just rolls.

And it's like, I am a genius because not only are we all making earrings, but I just learned everything about your ex-husband.

Exactly. So so the art comes in handy. I get to be creative, but. There's a lot more I would love to be. Better at. Yeah, I think you're pretty great already, thanks. I think, you know, technically we're related.

I'm not abandoning your house, right? What is your official last name, Johnson. OK. That's right. Good Lord, there are little cat named Harry Johnson, really, this is being recorded. Yes, it is. OK, what haven't I asked you? What do you want to tell me?

A:  I think when I think of you heading into this career, I think there's so many ways that health care is such an awesome and they're never going to not need health care. Right. So, so really smart job security there. I think that my experience with childhood illness is that.

While you might ebb and flow within your diagnosis as far as remission or the the ramifications of childhood illness, I think stay with us for a really long time.

And I think that's a superpower for you. I also think it is a, It's a it's an opportunity to open up parts of you and vulnerability that I think can be really intimidating to deal with, because I think that we all anyone who works with people meets those people with whom you instantly connect or you see parts of yourself or parts of your family.

And I think the hospital setting is sort of access into people's personal lives in a way that is really raw and beautiful and real and like, you know, like their bedpan is being moved out as you are talking and like that kind of intimacy that, like you get you don't get working in food service.

So I think that there are there's always a risk. When things are really close to home that it brings up and dealt with trauma, and I know that you have survived and thrived in ways that are really have shaped who you want to be and what what you want to be doing, which I think is really cool.

I just think that continuing to support you and your husband and your family. In. And making sure that you're safe in how you handle some of the things, and I think that it's my advice in that is take care of yourself mentally, like make sure that you have a good sounding board, because there are going to be scenarios in this field that I think hit really close to home. And that's an awesome perspective to be like, hey, I know exactly where you are because I can't say that, like, I've never had a child that's been sick.

You know, I can, I think, empathize. Right. Like, I think I sort of thrive on empathy, probably too much. So I haven't really walked a mile in those shoes.

And I think that. I just I just worry that you might either take on more than you think you are or be jaded a little bit more like I think that there's a whole lot of vulnerability there.

So I think the healthiest, healthiest thing and I don't know how you feel about it, but having a good therapist or a good sounding board or really good coping skills and working hard to put those coping skills outside of alcohol, which is a family code, I think just being aware from the start that that's like a component of your job is that you're going to be exposed to shit that's going to hurt and suck and maybe make you think about what you went through.

But I also think that the beauty of some of the programming the camp runs is, is that our counselors have been there themselves, like they know what it's like to be in those beds. And I know what it's like to have that many PET scans and central lines and all that stuff and everything. You know, like when a stent fails, everything falls apart. So, like, people who know that intimately, I think bring a whole lot of understanding, but a lot of hope, too. And I think that's another really beautiful thing.

That is a heavy sort of weight to have on your crown, is that there's going to be a lot of parents that go, oh, she survived this. And my kid, right? Yeah, and I think that that's beautiful and such a strength, but also could be a bit of a pitfall. Overbearing.

Yeah, I can see that, but I also think that's why we dive into the things we're passionate about because they are very real to us. And so I can't imagine you doing anything else if this is something that. 

You know, did you have a child that was there even child life when you were impatient? 

A:  A little bit, but like not not like there are in, like, every floor and exactly. Yeah.

Well, I think the other really cool thing about covid in all of this is, you know, I always try to look for these like covid silver linings, but the genuinely the accessibility issue for education, I think, is going to be such a game changer for folks with disabilities. You know, I think a lot of people who have had a childhood illness or who have a rare disease are sort of constantly fighting for the right to have like I can't do this college class in person, but I'd love to do it online and find what.

But for me. Right. And and or I have days that I have to take a lot of meds, that I sleep for 18 hours or whatever. And so just the flexibility that the world has sort of had to own in order to to compete.