How 'Wonders and Worries' Helps Children Navigate Parental Illness

Nicholas Hill  0:00  
You're listening to acts of impact the show where we interview organizations and individuals to learn about the positive contributions they are making around us. On today's show, we interview with wonders and worries. When a parent is diagnosed with a terminal illness. A lot of people think about the patient and their needs, wonders and worries instead looks at the children of that patient, and works with them to explain what's happening to their loved one, and help them navigate the changes that follow. In doing so they build trust, understanding, and stronger relationships between the patient and their loved ones. There's no need to wonder what our next guest will say. That's coming right up.

Nicholas Hill  0:55  
Hello, and welcome to acts of impact. I'm your host, Nicholas Hill, and we're here with today's guest, Meredith Cooper. Meredith is co founder for wonders and worries, a nonprofit organization dedicated to helping children and families navigate the challenges of parental illness. Meredith, thanks so much for joining us.

Meredith Cooper  1:16  
Well, thank you. I'm glad to be here today, Nicholas?

Nicholas Hill  1:19  
Yeah, we're certainly happy to have you. And Meredith, I think we should start with kind of what I've just described, you know, your organization is helping children navigate the challenges of parental illness? Can you give us a little bit of history there? How did children historically receive that kind of support? And what got you involved in this cause?

Meredith Cooper  1:41  
Well, that's a great question. Historically, children have not gotten this support. And how I became aware of that was, through my professional discipline, Child Life. I was the first pediatric oncology child life specialist in Austin. So I was working with children that had cancer. At a time when our children's hospital was adjacent to Breckenridge, our city hospital, I get called over from time to time to the adult units of Breckenridge, typically, it was at a final week or two of a parent's life when a nurse or social worker would become aware that a parent had a young child in their home, and was wondering how to help support that parent, and child, the entire family. So I would go over and work with those children and parents, they can have misperceptions around the illness, it's very easy for children to put two pieces of information together incorrectly, such as I hugged mommy too tight, and that's why she got breast cancer. So I became concerned, wondering, oh, my gosh, what has happened to these children and parents over the course of a cancer treatment and diagnosis, which often runs for many months or years even. So I started looking around in the community to see what kind of support there was for children when it was the parent with the illness, not the child himself. I didn't realize at the time, but about 18% of adults diagnosed with cancer have a child under the age of 18 in their home. That being said, As I looked around in the Austin community, I realized that there was no support for children. And after the parent died, that motivated me to look at what could be done to meet this new community need that I was passionate about. I was fortunate that my co founder, Missy Hicks, relocated to Austin in 1999, she had had a similar awareness working with children with cancer in Atlanta. So we joined forces and started wonders and worries in 2001.

Nicholas Hill  3:54  
Can you just tell us at a high level, what is the support that wonders and worries provides what are some of the areas of support that you provide to your to children and families.

Meredith Cooper  4:07  
We provide professional Child Life Support for children two through 18, who have a parent in the home with a serious illness. We did this without charge to our families. And it we offer individual as well as group support.

Nicholas Hill  4:26  
And my understanding is that you're one of the only organizations that provides the individual kind of personalized support that you provide to this age group. Is that right?

Meredith Cooper  4:39  
That is correct. There are very few entities across the country that are doing work in this field of children impacted by parental illness, but the individual support is available for any child or teen to throw at.

Nicholas Hill  4:55  
And for someone that's listening who may not be as familiar What does check child's life staff mean what does a child's life staff member do in a healthcare setting where

Meredith Cooper  5:06  
the term is Child Life. And there's a certification that provides expertise, traditionally in children's health care settings, to help children and families cope with the challenges around the illness. So continuing normal growth and development, while providing additional support for parents and children, around the specific medical treatments that are going to be occurring, that's the traditional role of a child life specialist. And we have taken it out into the community to provide the support for the children when it is their parent with a serious illness.

Nicholas Hill  5:46  
If I'm a child, who is in a household where a parent has fallen ill, or on the other side of that coin, if I'm a parent who has fallen ill and thinking about some of the challenges my child might be facing, what are some of those challenges? What are some of the things that you've seen, can can become a point of friction in the household or a point of confusion?

Meredith Cooper  6:10  
There's a significant amount of change that comes into home when a parent is diagnosed with any kind of serious illness, routines change. Certainly, I've had children tell me that it feels like there has shrank because when the parent comes home from a diagnosis, potentially with hospital stay, they may have been moving in with new equipment. Parents who are beginning chemotherapy may have lowered immune systems which prevent the children from being friends into play from parents going into schools. Parents may not know what to say, often out of a misguided desire to protect a child, they may say nothing, or they may not know what to say. And we have found that being preventative, from the very beginning, having language that is non threatening, that seeks to understand what the child may now help them understand what the diagnosis is in age appropriate terms. And then giving them an idea of what that plan, the new plan for the family will be particularly focusing on the worries that a child may have, you know, who's going to take care of me? What's gonna happen, if I come home, and mommy isn't at home, who will be here yet, Bonnie has a hospitalization. So we work with children and parents, ideally with parents first time parent consultation, to understand what the routines have been in the home, what their concerns are, what the temperaments of their children are, age level. And then we try and move to work directly with children in our areas. Austin, San Antonio Houston, where we have offices,

Nicholas Hill  7:57  
something that you've told me before is that there's also been a lot of struggle with how to talk to teenagers that are in the household, I think you mentioned to me that there's been a lot of emerging research about how teams are treated in these types of situations. Is that something that you've found as well,

Meredith Cooper  8:17  
that's true, they are four to five times more likely to have mental health concerns that can be dropped in performance, at school, multiple things like that. But emerging research, particularly for families where a parent may be in the final phase of life, are finding that the health care workers, the hospice workers really don't know how to communicate with the team. So maybe the routines are different. They may not be in the home or at the hospital to coincide. But the teens are desperately seeking information at a more adult level around what is happening with their parents. And some research is showing that those teens who did not get that appropriate communication from the health care providers or a parent, grow in their 20s have a distrust in the medical system, which again is critical for their own health and well being to be forthright and attending to their own healthcare needs.

Nicholas Hill  9:16  
Something that I want to kind of turn to are some of the ways that wonders and worries provide support. Can you just talk to me a little about the different types of support that you provide?

Meredith Cooper  9:28  
In the state of Texas, we have offices in the greater San Antonio, Houston and Austin areas and in those areas, we're able to provide direct support to both parents and children. And that direct support can be either in person or virtually, and is composed of our core curriculum, which is six sessions designed to establish a trusting relationship with the child life professional, and the child They'll then go on and build on their understanding around the illness treatment and side effects to not only clear up misperceptions, but give them a body of knowledge around what the parent is going through, and what the treatment is like and what the side effects can potentially be. And then we from there, we seek to give them an opportunity to express their feelings, particularly around the changes that I mentioned can be occurring in the house, and develop their own positive coping skills. With Parents were eager to hear how children and potentially handle challenging things in the past, build on those preferred preferences around what how they like to cope, and just enhance and enrich those coping skills to the child feels like they can see themselves, as well as parents, adding an enriching as opportunities for themselves.

Nicholas Hill  10:50  
I think back to when I was a kid. And I remember when I was really stressed out, I would always go skateboarding, you've told me that about an example of a child who he would always turn to sports, you know, he liked to play football, and that your team would build on that is that the kind of thing you're talking about?

Meredith Cooper  11:10  
Yes. In two ways, Nicholas, the first, as you said, sometimes playing sports, you can be focused on a specific routine training time games. So our support is meant to be very individualized and flexible as needed. While with older children, group support is ideal, because then you realize that you're not alone, that there are other kids similar to you going through similar, maybe not exact, but similar situations. However, it may be that in your example of the football player, and it might be that he's garnering a lot of support from his coach, his team, and that physical exertion is an important way for him to relieve stress. So we want to be adaptable and offer rather than always focused on a group support for older children and teens. Also offering that individual option and having that conversation with the family to see what's going to fit the best for their family. So that that's one way of building on those coping skills. The other thing is, I'm sure you realize, if you were in the classroom and feeling stressed about something you couldn't jump out and go skateboarding. So the other side of it is helping identify some coping techniques that can be soothing and calming in a variety of situations, specifically in school. Because we know a lot of kids are going to feel stressed in school, and what can we do to help teach them and build upon skills that will be soothing for them in different environments.

Nicholas Hill  12:50  
And I want to talk about the education side of it as well, because you talk about your the kind of six core six session core curriculum. And you and I have spoken previously about some of the activities that you do in that curriculum, would you be able to tell our listeners maybe about an example of an activity that you would do that would help the kids to to understand kind of what's going on?

Meredith Cooper  13:17  
Sure, because we don't just sit down and talk with kids by any means. We want them to feel this as a safe, fun place to come. And while all of our activities are adaptable to various ages that we work with to to 18, one of our favorite illustrations of how we get concepts across around illness. So the cancer education piece of it is what we call blood soup. With a cancer diagnosis. Typically, chemotherapy is going to be targeting fast growing cells, because cancer cells are fast growing, but our blood is also composed of fast growing cells. So I blood is going to frequently be impacted by that chemotherapy. And to get that concept across and help the children understand the components of blood red blood cells, white blood cells, platelets, we're going to make something called blood soup, which is simply putting together some corn syrup with some red dots that represent the red blood cells, some little mini marshmallows that represent the white blood cells and typically some grains of rice or something like that for the platelets. And while the kids are getting to compose this blood soup, of course, they're getting to taste the candies. And we're also having conversations around what the role is the job of each of those kinds of cells are for their body, and then talk a little bit more about how those can be impacted with chemotherapy. And of course, it's a fun tool to take home, talk to the parents about we reinforce it with some kind of laminated card and that Just gives them an opportunity to even sort of start processing or thinking, Oh, Dad's really tired tonight. He said he can't come watch my football practice for the next two or three nights. What's going on? Why do you think he's tired? He's not mad at you. What? Why? Why might he be too tired? You know, so just getting those ideas across to the kids.

Nicholas Hill  15:21  
Yeah, so not only helping to engage them with what's happening around them, but also building almost context, so that they can start to put things together and say, well, that's not mad at me, that is sick. And this is what's going on in his body. And here's the things that we learned and in our session, and I understand that your organization focuses not only on the individual and group sessions, but also on the research, you've talked to me a little bit about how you're constantly looking to understand the effectiveness of what you're doing. Can you elaborate on how you do that?

Meredith Cooper  15:59  
Absolutely, really, no one else across the country is has is doing this kind of work, certainly not for the length of time, over 20 years that we have been involved working with families in this capacity. From the very beginning, we invested in evaluations. And so our client families were asked, after three months of services to reflect back on their parenting, prior to receiving support from wonder some worries. And then, after three months of service, we also asked them to reflect back on their children and their behavior, prior to coming to under some worries. And then after working with a wonder source, Child Life Specialist, and those evaluations, over the years have continued to come back very strong, suggest showing that the parents felt much more comfortable communicating with their child around the illness, the anxiety to children went down, we had many beneficial results. In turn, we created an academic relationship with the UTC tech school of social work, and have built on our research initially, starting with qualitative research, comparing some of our teens who had a parent with cancer and receive wonder summaries support to other teens in another community who received counseling, but not I wonder some ways curriculum that is more research based, we moved on to a correlated study analyzing our data, again, showing significant results. So our most recent research focused on only a six session curriculum, we did a randomized clinical trial of those six sessions, and was found that the treatment group had significant gains, as opposed to the control group, specifically, the children had lower emotional and behavioral problems. And we're less worries related to cancer than the team's than the children in the control group. So we're continuing to invest in our research, look, always looking at best practices, we do provide, I should make the point that we provide anticipatory grief support, we really do want to work with families at the time of diagnosis, to help that positive coping be established from the very beginning. Some of our families do move forward into a final phase of life. And we do provide anticipatory grief support. Um, but we are providing that support up to and through the death for the families where that becomes a necessity.

Nicholas Hill  18:43  
Something else that I always like to talk about is, you know, a success story or to something that comes to mind for you. And you and I have spoken about your current executive director and a little bit of their history, because they were a former client, is that right?

Meredith Cooper  19:02  
That's correct. Alex Gavi, our executive director, he and his wife were both in the high tech world and at the delivery of their third child through an emergency C section, it was discovered that she had a variant cancer. Alison, Heather's older two children participated in the wonders and worries support, which they found value very valuable. Heather did pass away three years after her diagnosis. And as his children are now the two older ones, Nico is in college. My is about ready to graduate from high school actually just graduated from high school, and they have done very, very well. And Alex attributes a great deal of that, to the support they receive through wonders from worries. He has stayed involved with the organization. He brought that business mind that we needed to expand our business. So Alex continues to support the organization with his business skills, I'm very fortunate to have transitioned to focus on the expansion, which was always a dream of mine season of mine. So it has been wonderful to see his children flourish, for him to give back to the organization in such a special and dedicated way.

Nicholas Hill  20:18  
If I'm a parent listening to this, and maybe I am struggling with how to talk to my children, is there somewhere that that I could call to, to kind of get in touch with wonders and worries and talk to you about my options?

Meredith Cooper  20:35  
Yes, we do have a helpline that is open Monday through Thursday from 10 to four. So that and that is always staffed with our professional child life specialist. And Nicholas, I should mention that all of our services are always provided by a professional talent specialists, and they're without charge to families.

Nicholas Hill  21:00  
Can you tell me if I'm listening, and I want to help, or I want to get involved, how can somebody help wonders and worries either directly, or just do more to further your mission?

Meredith Cooper  21:14  
Anyone who is interested, we gladly accept donations, we greatly appreciate that they can participate in an event. We have multiple events where they can be a sponsor, potentially, we have a no worries, consequences disappointing close to coming up in October, we have a gala every year, the end of February. And then awareness is always delightful to most of our referrals come through the medical professions, and school teachers and school counselors. But word of mouth is significant as well. We have a dedicated Child Life Specialist for outreach. So if there's opportunities to speak to groups, or connections that any listener feels are significant, we would be delighted to have those as well.

Nicholas Hill  22:01  
And I wonder, Meredith, the support that you provide a lot of the examples that we've talked about so far have been related to a diagnosis of cancer. Is that a particular focus? Or is this inclusive of all terminal ongoing illnesses.

Meredith Cooper  22:20  
It's inclusive of any physical illness, that brings changes to a family, it can be illness or accident, quite honestly, we had a dad, who was a military vet, he had some in his knees are injured, he was riding his bicycle, had a fall and broke his neck and was paralyzed from the waist down. So that's an example of an accident. We have lots of other illnesses, whether it's heart surgery, or ALS, can be diabetes, you know, anything that is a physical illness, we're that's our skill set to be able to translate that information around the illness down to an age appropriate level for the child. Then cosine of one other thing that's important to mention to you the center's we are available for families who have children on the autism spectrum with other special needs. And we have bilingual child, my specialist. So our services are available in English and Spanish.

Nicholas Hill  23:29  
Well, Meredith, I want to just say thank you for talking to us about the great work that wonders and worries is doing and for volunteering your time to talk with us today. I hope that you have a wonderful 2022

Meredith Cooper  23:45  
Thank you. Well, I appreciate the opportunity to be here and share a little bit more about what we are doing in the community and encourage readers to explore on our website, wonders and worries.org both for professional resources as well as resources for parents and children.

Nicholas Hill  24:14  
Today's show was directed and produced by me with music from Alex scroll. Special thanks to our guests for their time and insight. If you like today's episode, please follow us wherever you listen to podcasts, and consider leaving a review as it will help us to spread the word about the show. You can view more information about today's episode online at acts of impact.com. Thank you for listening