Kicking off our newest series featuring Caregivers we speak with Connie Siskowski, President & Founder of the American Association of Caregiving Youth (AACY). Connie speaks with Dave and Erik about the hidden population of caregivers in our society: children. Her organization provides programming to offer support to this often-overlooked population – providing them respite and resources. Connie’s work illuminates what hardships are most pressing for youth caregivers and how, as a society, we can hopefully implement policies and secure funding to address these inequities.
Who are Youth Caregivers? Caregiving youths are children and adolescents who are 18 years of age or younger and who provide significant or substantial assistance, often on a regular basis, to relatives or household members who need help because of physical or mental illness, disability, frailty associated with aging, substance misuse, or other condition.
Connie Siskowski’s broad background in healthcare and dedication to diminishing caregiver struggles led to the establishment of the American Association for Caregiving Youth (AACY), headquartered in Boca Raton, FL. AACY integrates healthcare, education, and the community to provide a strong foundation for the youth and their families.
Connie authored the book, I’m a Teen Caregiver. Now What? She has received many awards including the lifetime Ashoka Fellowship, Purpose Prize, Distinguished Alumna Award from Johns Hopkins University, and Top Ten CNN Hero for 2012. Connie is now on the faculty of the national Family RAISE Caregiving Council to give caregiving youth a voice.
“When you take care of somebody, there’s a relationship that is unique. You don’t have that relationship without caring for someone. While there’s stresses, there’s also the blessing. It’s a very special experience.”
Connie : When you take care of somebody, there's a relationship that is unique. You don't have that relationship without caring for someone. While there's stresses, there's also the blessing. It's a very special experience.
Erik :: It's easy to talk about the successes. But what doesn't get talked about enough is the struggle. My name is
Erik :. I've gotten the chance to ascend Mount Everest, to climb the tallest mountain in every continent, to kayak the Grand Canyon. And I happen to be blind.
Erik :: It's been a struggle to live what I call a No Barriers life. To define it, to push the parameters of what it means. Part of the equation is diving into the learning process, and trying to illuminate the universal elements that exist along the way.
Erik :: In that unexplored terrain, between those dark places we find ourselves in and the summit, exists a map. That map, that way forward, is what we call No Barriers.
Dave :: Today we kick off our Caregivers Series by talking to Connie Siskowski, who is a Top 10 CNN Hero for her work serving youth caregivers.
Dave :: Her broad background in healthcare, and dedication to diminishing caregiver struggles, led to the establishment of the American Association for Caregiving Youth, which integrates healthcare, education, and the community to provide a strong foundation for youth and their families.
Dave :: Connie's book, I Am Teen Caregiver: Now What? has received many awards, including the Lifetime Ashoka Fellowship, Purpose Prize, Distinguished Alumni Award from Johns Hopkins University, and the aforementioned Top 10 CNN Hero for 2012.
Dave :: Connie is now on the faculty of the National Family RAISE Caregiving Council, giving caregiving youth a voice. Enjoy the conversation.
Dave :: Welcome to another episode of the No Barriers Podcast. I am really excited, Erik. Today we are joined by Connie Siskowski, and we're going to have a really interesting conversation about youth caregivers and caregiving. I can't wait to have that conversation. How are you doing today, Erik?
Erik :: Excellent. Thanks,
Dave :. Yeah. Smoky here in Colorado.
Dave :: Smoky, right? Yeah. It's very smoky here in Colorado.
Erik :: Connie, welcome to the show. Where are you calling in from?
Connie : Thank you. I'm calling in from Boca Raton, Florida. Sunny at the moment, but raining before, and I'm happy to share the rain with you all. I'd love the fires to get out for you and California.
Erik :: Yeah, that's for sure. Yeah. I mean, it's like when you walk outside and you walk through the neighborhood and you smoked a couple packs of cigarettes. It's not so great, but some days are better than others.
Dave :: Well, Connie, you've done incredible work. You're an RN and a PhD, and you're a CNN Hero. And the coolest thing I saw was that you got a star on the Boca Raton Walk of Recognition. I want a star.
Connie : Well, you got to come live in Boca to get one.
Dave :: All right. Cool. Well, it's good to see a lot of recognition for your work, because that helps spread your mission and helps spread the positive word.
Dave :: And the story of these youth who ... I really was struck by some of the stuff I read. Their stories are behind closed doors. I mean, that [crosstalk 00:03:46] really was powerful to me, that if somebody doesn't step up and tell their stories, then they're invisible, and that No Barriers we talk a lot about, these invisible barriers.
Connie : Right, because all the work that the kids do is really behind closed doors. That's one of the reasons that they're so hidden. Besides growing up and wanting to protect their own privacy and be normal, people don't see what they do.
Connie : Even within their own families, sometimes if parents are out working, they don't understand the impact on the children, and the children try and protect them. For instance, a couple of years ago, we had a student who had signed up to join our program. And always, we have to get parental permission. So we called, and the mom said, "Well, I'm a caregiver."
Connie : Then we said, "Well, does your son give your mom medication when you're not there? Does he do this and this?" "Oh yeah." There's not that recognition. Families are still unaware of all that the children are doing.
Connie : One time, one of our kids had said he had written, because we have a camp called Camp Treasure, and call it that to help the kids discover the treasure within, as well as to let them know that we feel that they are a treasure.
Connie : So one of the kids wrote, "What would people do if there weren't any caregiving youth?" They really fill a void in home care that either people can't afford, or managed care doesn't provide. They're a pretty amazing group.
Erik :: How did you found the American Association of Caregiving Youth? I mean, what was the compelling reason? Was it just, you saw those stories and you wanted to do something about it?
Connie : Actually, I took care of my grandfather when I was in middle school, and it really impacted my life. So it's been that along the way; seeds were planted for me. I went on to become a nurse.
Connie : And interestingly, as I look back, I became a cardiac nurse. And he had heart disease and congestive heart failure. So it was really just feeling compelled to do something about this. Because when I cared for my grandfather, it was an honor, and I would do it over again.
Connie : I was the one who found him dead. It was at a time when trauma and children weren't really recognized.
Dave :: Connie, tell us a little bit more about your grandfather and growing up as a caretaker personally.
Connie : Yeah. My parents were divorced, so we lived with my grandparents. My grandfather taught me a lot. He was really my hero growing up.
Connie : My grandmother, she didn't have that sense of compassion. In order to provide care, you have to be willing to do that and to have a relationship at a different level. It just came naturally to me.
Connie : Actually, as he became more ill, I moved into the living room so I could be closer to his bedroom in case he needed anything. I was the one who was getting up in the middle of the night to give him his medicine. That's when I found him no longer breathing. So yeah, that was trauma at a time.
Connie : And it wasn't only the trauma of finding him dead and not understanding that whole thing. But it was also that here I am, in eighth grade, and he's my father figure, and he's no longer there in my life. That just really impacted me.
Dave :: What did your day look like when you were in eighth grade, taking care of your grandfather? You were going to school, obviously, and trying to take care of him. You said you'd give him his medication. Would you do some other things as well? What would that care look like?
Connie : I helped him with his personal care. I checked his mustache and his nails. I helped him get into bed, which was really hard as he grew more ill and was having difficulty walking.
Connie : I helped to provide some personal care, and I wasn't prepared. Right now, we have a medical student who's working with us as part of her capstone project. She's looking at what is the effect when you care for somebody who's an adult, and particularly who may be the opposite gender? Because I was not prepared.
Connie : I was not prepared to give him a urinal and to make sure that he used it. Those were what one might consider among some of the ACEs today, when they look at Adverse Childhood Experiences.
Dave :: Now I noticed, Connie, in your personal story, a bit of duplicity of you, one, chose to do this. There was a positive part of the experience for you, as well as a very traumatic part. Is that common in youth caregivers, where there's that positive and negative going on at the same time?
Connie : Absolutely. I think it's for a caregiver of any age. Because when you take care of somebody, there's a relationship that is unique. You don't have that relationship without caring for someone.
Connie : Good grief, it's hard enough for us to manage our own lives. But then, when we have the responsibility of managing someone else's; while there's stresses, there's also the blessing.
Connie : One of the gentlemen who I helped through our agency; I was working as a volunteer. He said to me, "Connie, when we had our family, I was traveling all the time. It's really only since I've been a caregiver for my wife that I have learned what love really is."
Connie : So it's a very special experience. Also, well, it can be draining. That's why it's so important to have some time for self care. It can also give you a sense of purpose. And that sense of purpose; what happens when it's lost?
Connie : We had a team meeting this morning. I was just talking about it that when some of our kids experience the death of the person that they're caring for. It doesn't mean that we discharged them from our program, because some of them may need some ongoing support.
Connie : That's so hard. Because like anything, when you lose something, there's that vacancy. And what fills that vacancy? If you've been used to taking care of someone; we've had a few of the girls become pregnant when their caregiving situation changed, because that bond can become so strong and the sense of purpose. What fills that?
Erik :: 11:29 Connie, you obviously started an organization serving kids who are caregivers, eight to 18. Tell us about what you see as some of the solutions that your organization is providing to help support these kids.
Connie : We work in partnership with the schools, and it's really just the public schools. We still have charter schools and some private schools to work with. We identify the kids beginning in sixth grade, and they continue with us as long as they want to through high school graduation.
Connie : In school, we do skills-building groups, which is we use a curriculum that we have developed and copyrighted, so that we have consistency from school to school.
Connie : We also do Lunch and Learn sessions, and we do those based on the top diagnoses. Actually, I'm just right now in the process of looking at has that changed over the past few years? So that one month we may focus on cancer, or another on autism or mental health, whatever. In the middle schools, we do that twice a month, and the high schools once a month.
Connie : Then I think one of the most important things that we do is our family specialists who are MSWs do home visits. That really allows us to help the family understand some of what the kids are going through, but also see the need for respite for other services.
Dave :: Is this program that you described in school systems? [inaudible 00:13:05]Erik and I are here in Colorado, you're there in Florida? Is this something that in Colorado, we could get into our school systems? Or already exists in Colorado?
Dave :: Is it a national program? Is it regional based? Tell us a little bit about if we think this is something our community needs, what do we do?
Connie : I think every community needs it. Because certainly, my longterm goal is that no child in our country should have to drop out of school because of family caregiving responsibility.
Connie : In addition to doing the home visits, we also do activities like our camps, so that the kids get a break and have fun. Our services are in and out of school and at home.
Connie : But you talk about No Barriers, right? But one of the big barriers is funding. That's why I'm thankful to be able to be on this podcast, because who knows who will listen to it?
Connie : Until our government in its wisdom will recognize the impact on children; and really, the wonderful investment they make; because each time a child is able to graduate from high school, their earning potential is about $10,000 a year more, which is taxable income.
Connie : So it's a great investment. And when they're properly supported, the kids want to go on to post-secondary education. Again, if they're properly supported, many want to go into healthcare.
Connie : As our population ages and changes, we need people in the healthcare labor force of the future. It's a really multifaceted ROI for the community, for our country, for society.
Erik :: What would that support look like? Would it be funding to have a caregiver in the home, so that the kid wouldn't have to be the caregiver? Would that be one of the solutions?
Connie : I don't think so. Because we talked before about the symbiosis and what a child can learn. Why take that away?
Connie : I think having supplemental help in terms of respite; well, right before COVID started, we were initiating a youth-directed respite. Because again, this is helping them to reduce their stress and give them a break.
Connie : So is that having a break because a home health aide comes in to do what they normally do? Or is it somebody cooking a meal for the family, and bringing maybe a prepared meal? Or is it helping with cleaning? Not every child loves to clean. Maybe they don't mind giving medications and taking care of someone, but they hate to clean.
Connie : So we've made our respite youth-directed so that it can be either cleaning or having somebody there who's a home healthcare aide, or home-delivered meals.
Dave :: Connie, are your programs limited just to your current school district? The one that's the 10th largest in the nation; is that where you're focused?
Connie : Well, that's where our direct services are. That's why we're working to raise awareness. We began the Caregiving Youth Institute, and that has four tenets.
Connie : One is to Connect kids with each other; second is to Advocate, because we really need this legislation to be inclusive. The third is to do Research, because it's been so scant in our country. Then the fourth is to Educate. So it spells the word CARE, and to educate both professionals and the public.
Connie : Through that, Dr. Betsy Olson, who is with UNC in Chapel Hill, and myself, are in leadership roles. We began the Caregiving Youth Research Collaborative, which involves people from about nine different universities across the country.
Connie : It's been interesting that we also developed an affiliate network. But it's been hard for affiliates without foundation support, without government recognition, to be able to continue.
Connie : One of our first affiliates was in the Bronx. There, they have a situation where they have a whole facility for grandparents raising grandchildren. They also have a caregiver outreach.
Connie : We said we wanted to try and look at the kids who are caring for grandparents who are well, versus those who may need extra support. They were reluctant and haven't done that yet, because he didn't have extra dollars if the kids who were caregivers needed extra support to provide for them.
Connie : Where we're really encouraged, I'm now on the faculty for the RAISE Family Caregiver Council, which is through the Administration for Community Living of HHS. They do have a mandate to include caregiving youth.
Connie : Some of our kids, I think about seven of them, recently participated in a listening project that's being done with people from Boston University. It was like a focus group. Then they're doing the transcript, which will go back to the people on the actual council. They can hear directly from the kids what their concerns are. So little by little ...
Erik :: At a macro level, what do kids say? I mean, are they like, "Hey, I'm terrified. I'm so scared something's going to happen to Mom or Dad; that I'm going to screw up. I go to school and I can't focus on my studies, because I just keep looking at my phone, and worrying that they might need me"?
Erik :: What, at a base level, are those concerns for a kid?
Connie : Those concerns are real. If you look at some of the studies of adult family caregivers at the workplace, how sometimes they can't function, they don't get promotions. They have trouble focusing. The same thing for the kids.
Connie : Some schools they won't let them use their phone, so some of our kids have gone to the bathroom to use the phone. Again, that's part of educating teachers, educating school staff. That these kids might need to check in, so that it helps to relieve their stress.
Connie : Another thing that we've done is work in a partnership with MobileHelp. They have the Life Alert for kids that are worried about someone falling.
Connie : We had a boy come home, and his grandmother was in the backyard. Another boy came home, and his mom had fallen in the closet and couldn't get up. These are real traumas that the kids feel and experience, and they do worry when they're in school.
Connie : Most everything that we do is to educate them and to help reduce the stress on them, so that they can learn and be successful academically, as well as personally.
Dave :: And how specifically do you take the weight and anxiety off a child? And say, "Hey, you just need to be a kid sometimes"?
Connie : We work on stress management throughout our program to teach alternate ways of reducing your stress. Whether it's through yoga or meditation or deep breathing or music, or whatever helps that child so that they have a time and a place where they can regroup. Because it's not easy.
Erik :: Connie, how could we be a good friend if we have a friend who is a caregiver? What do you recommend to people to be a good member of that rope team who have a friend who is a caregiver?
Connie : I think being there for them is just really important. Not being judgmental is so important. Maybe doing something special.
Connie : One of our kids had said to me once, "Nobody says 'Thank you.'" Not even in their own family. Being able to appreciate them and what they're doing, supporting them in whatever way possible.
Erik :: I know,
Dave :, you'd thrown out 1.4 million. And Connie, you were saying, obviously, by this point, it's way more.
Connie : No, we have to use the number now 3.4 million, at least.
Erik :: 3.4 million. But my question is, I imagine it's even larger than that. I mean, I'm just talking about personal experience.
Erik :: When I was a kid, my mom had mental health issues. Sometimes she'd go to her room and just stare at a wall for four days. I was so ill-equipped to deal with that. I would have never admitted in a million years that I was a child caregiver. Right? I mean, I would have put a smile on my face and said, "Yeah, everything's perfect."
Connie : Yeah, you wear that mask, don't you?
Erik :: A hundred percent. You wear a mask for the world. So how do you get kids to be brave enough to say, "Yeah, I need help. I am a caregiver." Even to admit it?
Connie : That's why we use in sixth grade a screening survey, if you will, a screening form that kids fill out. We'll use that to identify kids that are in the top three of five levels of responsibility. We ask them what tasks that they do, how much time that they spend, and who they're caring for.
Connie : The cream rises to the top. Then we get to meet with them and let them know about our program and invite them. They may not want to right now.
Connie : We have a situation where I was contacted the other night by somebody from the school district who said, "Can you help?" He had been at one of the elementary schools, and this child's mom had gone into the hospital with COVID and had never come home. It's a special needs child with a low IQ who has a sister who is doing really well in school, in a middle school.
Connie : Through the proper channels, we talked with the dad. And the dad said, well, if his older child would want to come in the program, he would be willing. But she wasn't ready.
Connie : So we found some grief counseling for the elementary school child, who's used to dealing with a child with special needs so that she can get some relief. Because until we get that parental buy-in, we're not really able to work with the kids.
Erik :: Connie, can you tell our listeners where they can go to learn more about your organization and your work?
Connie : Sure. I think the best place right now is on our website at aacy.org. They're welcome to call. If they use the email email@example.com, it comes directly to me, and I'm happy to respond.
Dave : And as always, if you heard any organizations mentioned during this conversation or resources, we will put those into our Show Notes. You can take a look at the Show Notes for other links that might be applicable.
Dave : Connie, it's been a real delight talking to you. Thank you so much for the important work that you are doing in this world. I hope that our nation and beyond continues to realize what an important issue this is to support.
Connie : Our goal is to be able to reach as many kids as possible, also to raise awareness among legislators. I think we're getting there, but we have a ways to go.
Dave : Yeah, yeah. For sure.
Connie : It's really a societal effort. We work between the systems of healthcare, education, and the community to really provide a holistic model of care, which is needed.
Dave : Yeah. Well, thank you, Connie, for joining us, Erik, another really fascinating conversation about such an important topic. What stood out for you today in today's conversation?
Erik :: I mean, I just have a very simple thought, which is my heart goes out to these kids who are caregivers, who have to grow up so fast, who have to become adults, who don't necessarily get a carefree childhood.
Erik : I mentioned my personal story; I was absolutely incapable of telling my story or asking for help. I just put a smile on my face. Connie put it beautifully that yeah, you wear a mask for the world.
Erik : I'm just so glad that organizations like Association of Caregivers for Youth really exist, and that there is support out there. I hope that that's the reason for this podcast; giving attention to organizations like this, and the fact that there is support out there.
Erik : If you know a kid who's in this situation, or if you are a youth that has happened to be listening today. Yeah, you know there's help out there.
Erik : America's funny; the support is out there, but it's not going to come to you. You have to reach out and have some courage to take that first step.
Dave : Yeah. I think that to me, part of what's striking was just some of the numbers that Connie shared. I mean, millions and millions of kids are in this situation in our nation. Like you said, they have to go find the resources, most likely, if it weren't for organizations like Connie, where they're already in the districts.
Dave : I often worry about youth who are struggling with very difficult things in their lives, but aren't given the resources to deal with those struggles. Like we do at No Barriers, we believe we have those resources that can help people in the midst of struggle. And Connie has those resources for youth caregivers.
Dave : I hope that if folks are listening here, we definitely have teachers that listen. And administrators, that you think about bringing this kind of program to your own district in your own community.
Connie : Also pediatricians and nurses; it's those people too, that can support social workers, need to know so that they can help identify the kids and offer them support. Because the kids don't know enough. They have to be guided and know that that support is available.
Erik : Perfect.
Dave : Well, thank you everybody for joining us today. Thank you, Connie. Thank you, Erik. Another great conversation.
Dave : Thanks to all of our listeners. If you enjoyed this conversation and have a particular interest in learning more about caregivers, you can check out the resources in our Show Notes.
Dave : You can also go to nobarriersusa.org and look up Caregivers. We are doing a short series of podcasts on caregivers. So if you check out podcasts to come, you may find some other great conversations about the caregiver community.
Dave : Thank you all for listening, and Go No barriers.
Erik :: Thanks. No Barriers.
Dave :: The production team behind this podcast includes Senior Producer Pauline Shaffer,h Jank. Sound design, editing, and mixing by Tyler Cottman. Special thanks to the Dan Ryan Band for our intro song, Guidance.
Dave :: And thanks to all of you for listening. We know that you've got a lot of choices about how you can spend your time, and we appreciate you spending it with us.
If you enjoy this podcast, we encourage you to subscribe to it, share it, and give us a review. Show Notes can be found at nobarrierspodcast.com.