What about us? To care for kids, we need to care for the parents

Kristie: When our oldest son turned seven, um, he just started to really struggle and we started struggling right along with him. Things were bad, really, really bad. Just a total like, chaos from morning until night. Um, it, I mean, it really affects your heart. 

Sandra: What happened on a Friday night, a big tantrum, some kind of outburst and, um, she couldn’t calm down. The next morning she said, “I, I just hate myself. I hate my life.” So her therapist said you should really go to the emergency room. 

Joanna: I remember feeling really just overwhelmed. And so, I guess lonely, because I didn’t understand who I could ask for help or who I could share this experience with that would understand why my feelings were so big.

Kendra: Have you ever looked at the kids in your life and thought, “This is not what I signed up for.” There are so many stories and they all start a little bit differently. Our kids are all unique and their challenges are all unique, but it doesn’t matter what the diagnosis is or whether you even have one. If your child struggles, you will too.

I’m Kendra Wilde. Listening to those stories takes me back to a moment more than 10 years ago. There I was mid muffin and it happened again. I was sitting in a coffee shop with my girlfriend, just trying to enjoy a moment of peace. I’d been in survival overdrive for too long. I was scared to ever part with my phone in case I got one of those dreaded calls from school, the kind that says. “Hello, Ms. Wilde. Sorry to interrupt you. Uh, uh, uh, your, your child is safe. Everything’s okay. But, but if you could come down here…” And every time their number popped up on my caller ID, I’d almost throw up in my mouth. 

Michelle: When you think about being a parent, you think about the Pinterest view of being a parent or like the mom with the wine, with a lot of laundry, but like no other problems, but yet then they come up with this, an extra thing, which work requires follow up and treatment and patience and stress and emotional journey. And you’re like, dude, this is not what I signed up for. 

Kendra: Parenting can be so amazing and it can be so hard. When things don’t go as expected, it’s extra stressful. Figuring out where to turn and how to help is exhausting. Kids and teens are facing an official mental health crisis, and other challenges like ADHD are on the rise. The pandemic only made things worse. It’s no wonder so many parents are burning out. 

I’ve been there in my own way. What struck me is that so many of us feel the same, but it can still be incredibly lonely. All the science shows that the resilience of kids rests on the wellbeing of their primary caregivers. So isn’t it strange that there’s so much focus on what we should be doing for our kids, but a lot less on how we are doing ourselves. 

Joanna: Yeah, it really, really changed our world. Loving Audrey was easy, but tracking down the resources that I needed to be her parent was really hard and confusing. That took so much of me, that it distracted from, um, just being present, which is all I wanted.

Kendra: When your kid struggles, the demands on you as a parent are intense, almost all of us at some point, launch ourselves on a quest to find a “fix.” And that can be so complicated. 

Amy Brown: I think we try so hard to look under every rock that we, we get frantic and burn out. And so when I look back now, I think, okay, you were doing the best, absolute best you could.

Felimon: Back in the day, I used to just put, put away that grief and then, you know, sit down and work until two in the morning, sleep, wake up six in the morning, start working again, take care of the kids. And, and you think that you’re, you’re, you’re a Superman, but you’re really… it was a form of grief. It was a form of managing my anger. Managing the things that I missed and, and the life that, that was kind of passing us by.

Kendra: When I speak with moms and dads who are parenting this way, it’s striking how much we all have in common. The details of all our lives are different, but the same themes always emerge. In fact, you could even say a lot of these themes also apply to parents with typical kids, at least a bit. 

Amy Brown: Moms of neurotypical kids can hear what you have to say and go, oh man, that’s me too. I just don’t have it to that degree. I mean, just because you know, your kid’s not trying to burn down the house doesn’t mean it’s not hard! 

Kendra: And of course in 2020, it got harder. All of us. Typical or not got stuck in our homes on lockdown with all of our complicated family dynamics. And all of us struggled, perhaps in the same kinds of ways that families of high needs kids had always struggled.

Gina Gallagher and Patty Terrassi, who together are the “Shut Up Sisters” wrote a book about their experiences raising daughters with challenges. 

Gina Gallagher or Patty Terrassi?: You know, the thing about this pandemic is it’s been the ultimate equalizer because nobody’s really happy. Like if you look on social media, like everybody’s miserable…

Kendra: everyone has… and then they’re pathologizing it too, but everyone has anxiety, depression, right?

Gina Gallagher or Patty Terrassi?: It’s like everybody’s sort of miserable and. 

But do you remember in the very beginning, it was like, oh, we’re in lockdown. I’m gonna learn a new language or I’m gonna learn, I’m gonna make a new meal every week, try something new. And it’s like, where are those people now? That’s what I want to know. They’re drinking along with the rest of us! 

Kendra: I didn’t decide to learn a new language in lockdown. But I did decide I was finally gonna make the thing I’ve had in my head forever. An audio resource for parents, a podcast that would grab you by the elbow and ask, “how are you holding up?” And this is it. Welcome to A Little Easier. 

Over the next 12 episodes we’re gonna meet some of the most brilliant minds in neuroscience, psychology, mindfulness, trauma, and resilience. And we’ll also sit with some parents who share their own lived-experience. We’ll take a journey together to explore the secret feelings that many of us keep hidden. And we’ll learn why there’s an epidemic of parental burnout and what we can do about it. We’ll delve into our nervous system and how it’s connected to our kids. And we’ll figure out the best way to find the support system that you need, all with the aim of making things feel a little easier. There are shifts we can make to feel and function better, even if our circumstances stay the same. I can’t wait for you to get the lift that I got from this.

No Letting Go (Film Trailer): So, Tim, do you have any idea why mommy brought you here to talk to me today? Sometimes I get kind of worried. Oh, sweetheart. 

Kendra: Randy Silverman ended up making a movie about her son’s struggles with bipolar disorder. 

No Letting Go (Film Trailer): How did I not know that kids could have anxiety? Can you describe what it looks like when Tim gets upset? His eyes change. Like he becomes a different person. You made me forget when I was writing. You ruined it. Sometimes he can get violent. I hate you. You ruin everything. Why do you always take his side? Timothy has an illness. No, Tim. Get off of me. I will get all of you. 

Kendra: A lot of parents I talk to, they say, well, I would love to talk on your podcast or I’d like to talk to you about these things but it’s also my child’s story, and I don’t want to share that. It’s not really my choice to share that. How do you get over that? Like how does your son feel about you, you know, making a film about him and describing his struggles out here in the world?

Randi Silverman: Yeah. It’s a really, I get this question all the time and people say that, say it all the time too. I, you know, I completely understand. The first thing I would say is, it’s your story. It’s not just your kid’s story. Now I know we don’t wanna ‘out’ our kids. We’re afraid they won’t have friends, or they’ll never get a job, or they won’t, you know, something they’ll get kicked out of school or whatever it is we’re afraid of. 

Um, I’ll go back and say that when, when I was writing, when I had the opportunity to write the film and, and, um, and, and have it made, I sat down with each of my kids separately and asked them how they felt about it. Um, And all, each of them individually were very, very supportive. They really felt like this is a story that has to be told. If we act ashamed and embarrassed, then our kids will too.

Yes. If we treat it like, Hey, if you had cancer, I would tell my friends. Right. And they’d come and bring us casseroles right. And, and we treat it without shame. Then we teach them, we model that for them. And so the good part about my child struggling at such a young age is I started modeling that very young. And you know, I’ve tried to teach him to say, “yeah, okay. I have bipolar disorder. So what, you know, that that’s not who I am, it’s it’s a condition I live with.” 

Kendra: We’ll be returning to sit with Randi later in this podcast when we talk more about what it’s like to find your voice as an advocate for your child and yourself. Lots of families find out that advocacy is necessary early in their journey. And that’s because you are the expert on your child. And when you have a child with high needs, you often find yourself having to navigate the medical system and the special education systems. 

Devon: I feel like it was a parental PTSD. Okay. That is the best way I can describe it. Like I’m sitting there in a state of panic all day.

Kendra: This is Devon. She has a son who struggled right from the very early days of preschool. 

Devon: So the school is calling me. Like, oh, he’s doing this. Oh, he won’t listen. Oh, he ran out the classroom. Um, he don’t wanna do circle time. And she’s telling me all this stuff and. Just think about it. You in the middle of your workday and you already have your tasks set up that you need to do, and you didn’t plan to get a 30-minute call from one of your kid’s school about their behavior. And it is 30 minutes of them saying what has went wrong for the day. 

Kendra: Almost every parent I talked to has a story like this

Devon: and you already stressed about, I gotta make this for dinner. Oh, I gotta make sure I get this bill paid. The car is making that sound. How am I gonna deal with that? So I was like, ma’am please. It really, it  drained me. And looking back on pictures now, I just look so tired and I look so unhealthy. Like it really took a toll on me you know, not knowing what was going on with my baby, 

Kendra: A long school evaluation told her her son was “emotionally disturbed”, but it wasn’t clear how she should address that. Devon figured she needed another opinion and maybe an official diagnosis to make real progress.

Devon: So, um, when I asked the pediatrician’s office or whatever, how much does this type of thing cost? Them people was like $300 to $500. And I’m a single mom. Um, by this time I had lost that job I was telling you about, because my performance plummeted. So when we went over there, I had to self-pay. I’m trying to, like $50 here, $25 here. Oh, I got another $10. Oh. So I’m saving up. So I finally save up enough money to go to the pediatrician and get the evaluation started. It came back so fast. That appointment was like a hour. If that. And she comes back in there and she’s like, oh, he just have ADHD. That’s all. And I could have, I think I cried with that lady, because I was like, what? Why did it take me paying you $500? Like it made me feel so defeated. Like, it’s, it’s just a horrible feeling to feel like you can’t help your kids. 

Kendra: We’ll hear more from Devon and in the end, we’ll find out how she managed to piece her own life back together and help her son thrive. When you get a diagnosis, as Devon did, you’re launched into the medical model of care and often into the special education system. There is a problem and you need to fix it. This turns you into this general contractor for your kid. 

Erin: The reason I was chasing after that autism diagnosis is because it cuts through a lot of red tape to just have an insurance code for diagnosis. 

Kendra: This is Erin. She has two girls with a rare genetic condition that brings with it multiple challenges. 

Erin: I have two children that have a team of three neurologists each. How do I fit in all of those appointments? You know, some of them are over an hour away just commuting. So that’s a full day appointment right there. So now they’re, the child is out of school for the day and, and that stress is the same for everybody. We, we’re all dealing with the same thing. 

Kendra: It’s interesting. Because I’ve been so tuned into parental stress because it was just like, I was always on edge waiting for the next thing to happen, and all that pressure of kind of getting on that treadmill, where you’re trying to like, kind of fix them. You don’t ever stop to really even register the stress that you’re shouldering. And there was nobody that just said, “how are you doing” – right.

Erin: When people ask me what I do, I tell them I’m a medical maintenance manager. Yes. I mean, really  yeah. Um, 

Kendra: Good for you, 

Erin: But, but you’re right. When you go to all these appointments, you know, it’s about the child and what medication is next and what therapy is next. And that parent piece, unless, unless somebody goes searching for it is, is non-existent, it’s not just a given. But at the end of the day, after caring for your children and, and all of their needs – we do come last. 

Kendra: Another issue with the medical system is that it’s set up to see only deficits instead of seeing the unique child and the whole family system. 

Dr. Rita Eichenstein: Everyone is always trying to get the solution, how to fix my kid, how to fix your kid, what advice to give. But nobody’s really tearing apart the present moment.

Kendra: Dr. Rita Eichenstein is a clinical psychologist. 

Dr. Rita Eichenstein: The tendency is, our good Western medical model is to isolate each, uh, you know, there’s finger doctors. There’s hand doctors, there’s elbow doctors, there’s joint doctors. So they’re trained to isolate, identify and fix it. And that just doesn’t work when it comes to children and parents.

Kendra: Sometimes I wonder if this whole medical model kind of unintentionally sends us down this “fix-it” path, when we have the chance to really just accept our kids exactly for who they are in the moment, instead of trying to get to some sort of magical end-zone where everything is somehow better. (Mm-hmm) uh, it’s just so freeing because then you can really see them for who they are and appreciate it and, and stop fighting.

Dr. Rita Eichenstein: Absolutely. I, and I agree with you about the medical model, because I’m a neuropsychologist and I test children, I do the assessments and I’m always looking at the whole brain, the whole child: strengths – challenges. And when a child, let’s say they’re seeing a psychiatrist and they say “Yep. An existing diagnosis, ADHD. He meets six symptoms of inattentive and two symptoms of hyperactivity and, check check.” And I go, “well, wait, there’s so much more going on here.” 

Kendra: And the implication of starting to look at the whole child, the whole family, and the whole situation might be that we get more complicated answers when it comes to treatment. Dr. Christopher Willard has some perspective on this. He’s a psychologist who specializes in coaching mindfulness techniques.

Dr. Christopher Willard: I feel like often when I’m working with people who are struggling in some way, or grieving in some way, or going through whether it’s, you know, a breakup or a loss or a challenge, right. Um, As a therapist, I don’t always know the right thing to do, but I certainly know the wrong thing to do. Like, it can be a bit of a relief. It’s like, there’s no absolute right thing that I should be doing. And I think our culture looks for answers and looks for fixes and the medical model, even, you know, which comes into therapy is like, here’s the thing to do if you’re in grief or the thing to do, if you’re in trauma or in anxiety and it’s like, you know there’s not. There’s many, pretty good things to do. And all of them help a little bit. Or many of them help a little bit. Right? None of them helps absolutely.

Kendra:  “Many pretty good things.” That’s a theme we’ll keep returning to. During this process of interviewing all these people in the midst of a pandemic, what I noticed is that we are less and less afraid to talk about mental health challenges. And these challenges are not things that are only experienced by families with high needs kids. 

Dr. Nicole Buerkens: This idea that we have this huge spike in mental illness as a result of the pandemic. No. What we have is a world of human beings who are experiencing exactly what we would expect them to experience as a result of being in a chronically, uncertain, stressful, really challenging situation in their lives. And of course, the majority of people are struggling with more of these things. It would be really weird if they weren’t. 

I’m Dr. Nicole Buerkens. I am a licensed clinical psychologist and a board certified nutrition specialist, and actually have, um, a background in education. 

Kendra: I turned to Dr. Nicole for some thoughts on the subject of clinical diagnoses in general and also to talk more about how we’re processing what’s happened to us during the pandemic. 

Dr. Nicole Buerkens: It’s gonna show up for some people in experiencing panic attacks and anxiety. It’s gonna show up in other people experiencing, really, you know, depressed mood and difficulty getting out of bed. It’s gonna show up in some kids looking like hyperactivity and impulsivity, or, you know, rage kinds of behaviors, or, you know, lots of things. It’s gonna show up that way because that’s what happens to us as people. And so I think that reframing it that way, that opens up a whole different way of understanding and embracing and accepting what’s going on. And, uh, you know, what we do about that and how we support people then. 

Kendra: I completely agree. And I think even if you move outside of the pandemic and you just look at our pathologizing (mm-hmm) culture, I mean, it seems like we love to put a label on something. 

Dr. Nicole Buerkens: Yeah. I am a really unusual clinical psychologist in that I really dislike labels and diagnosing people. I do it because obviously it’s a part of, um, you know, what sometimes people are seeking out when they come in to see me, whether they need a diagnosis for insurance reasons or to get school supports, or some other reason. But outside of those reasons, I find diagnoses and diagnostic labels really unhelpful. Because what they do is they put a kid – or an adult for that matter – in a box that says, here’s the criteria. Here’s what you have. 

Kendra: She says, one of the biggest problems with diagnostic labels in the world of mental health is that you can’t think of them in the same way that you think of physical diagnoses. 

Dr. Nicole Buerkens: It’s important for parents to understand that every diagnosis within the realm of mental health, even though we have a big, you know, 900-page manual about it, it’s all subjective. It’s a group of professionals who sat down and based on their experience and their reading of the research and their worldview on human brains and functioning decided these are the categories. These are the criteria, and these are the labels.

Kendra: That was obviously done to standardize diagnosis in mental health.

Dr. Nicole Buerkens: But what we know is that human beings and human brains are way more complex than that. As human beings, we really like certainty and we like black and white. We like to feel like we know, right. (Mm-hmm) So a lot of times for parents, especially if your child is struggling, it’s like, “I need to know what’s going on with you. I need a name for this. I need a label.”

Kendra: And the reason many parents want a label, is they want a standard treatment in the same way they’d get treatment for a physical illness. 

Dr. Nicole Buerkens: When we’re looking at the brain, that’s not how that works. You get a diagnosis and then parents often are very surprised to discover, well, what do you mean there’s not a standardized, specific, one-size-fits-all course of treatment for this? 

Kendra: Even the systems that are set up to help us are complex and intimidating. As we all try to figure out the best way to help our children through their own struggles and navigate this medical maze, we also have to be careful of our own mental and physical health. Later we’ll spend a whole episode exploring how parents burnout and what we can do to deal more effectively with stress. We’ll hear from author Amelia Nagoski. 

Amelia Nagoski: I think the most important thing to remind anybody going through this is that they’re feeling overwhelmed and exhausted. Not because they are weak, not because they are inadequate, not because they’re broken, but because what they are being asked to do is unreasonable. What they’re being asked to handle is not handleable by a person. I mean, they used to say it takes a village to raise a child. We no longer have access to a village. And asking for help and learning how to ask for help and learning how to appreciate help is a large-scale, systemic problem of making resources available to families. And it’s also a small-scale individual learning curve of figuring out it’s okay, I’m allowed to ask for help. You cannot be a village. And so if you’re overwhelmed and exhausted, of course you are, of course you are. That’s okay. You need help. 

Dr. Bruce Perry: You know, the world’s got all kinds of expectations about how you are supposed to act, either as a parent or as a worker, and at some point that trying to live up to those expectations is destructive. 

Kendra: Dr. Bruce Perry is one of the superstars of this field, a trauma expert, he’s been a clinician, researcher and teacher for over 30 years. He also co-authored a bestseller with Oprah. Later in this podcast, I’ll talk to him in detail about how emotion works within families, but for now, here’s his surprising advice for parents who are on the edge of burnout, dealing with all of the stress.

Dr. Bruce Perry: Well, the first thing I tell them to do is stop listening to experts.  

Kendra: Yeah. Yeah. 

Dr. Bruce Perry: No really. They, they need to listen to themselves, how they feel, and not be guilty that they’re just worn out, tired out and don’t wanna do something. Um, you know, I think that one of the biggest things that people need to be better at is forgiving themselves for not meeting other people’s expectations. (Yeah.) And it becomes self defeating. The harder you try, the more worn out you get, the less functional you get, the more they yell, the more you burn out. And then ultimately you just – you’re gone. 

Kendra: Totally. 

Dr. Bruce Perry: And so what I think the biggest thing that people need to do is, is be patient with themselves. Take their foot off the gas pedal. Don’t worry about your kids falling behind. That’s a bunch of BS. Falling behind what? I mean, that’s what I always say, like what? You know? So what if you’re six and you know your multiplication tables or you’re six and a half. Who gives a shit? Yeah. It doesn’t matter. None of that matters. Is your child healthy? You know, is your child happy? Is your child joyful? Is your child forming good relationships? Is your child making good decisions? Be okay with yourself and, and everything else will flow from that in a better way.

Kendra: Be okay with yourself. That’s an idea we’ll spend some time with, too. As we explore all these issues over the season, we’re gonna meet lots of parents who’ve struggled and who have difficult stories to tell. Some of them might be hard to hear. But we’ll also find out how those stories can inspire us.

Lovey Brown: Yeah. I feel like that, the picture of, um, Atlas. Like, like you got the world on your shoulders, and even with the world on my shoulders, I still got people shooting at me. I still got people poking in my ribs. I still got people pulling me. 

Kendra: This is Lovey Brown. I met him through a parenting group, run by the Yale Center for Emotional Intelligence. He’s a single dad raising a son by himself. 

Lovey Brown: What motivates me is to look in his eyes. I don’t need anything else to motivate me cuz if I’m not motivated, and it’s something I tell him about being self-motivated. We gotta be able to self-motivate ourself. We can’t wait for somebody else to inspire us. I mean, that just has to be my outlook because if I, you know, if I cry in my shower, what am I gonna do? Just drown in my tears? How is that gonna help my son? How is that gonna help the world? So, yes, every day is a struggle, but every day I wake up with a smile on my face, knowing that a little bit of me a little bit of love will change the world. So I’m optimistic.

Kendra: Coming up on A Little Easier we’ll begin our journey in earnest by talking about some of the difficult feelings that surface when you’re struggling to parent. We’ll talk about shame, guilt, anger, and sorrow – those “secret feelings.” 

Dr. Rita Eichenstein: You can have two feelings, uh, two stones on your heart. I call it the joy and the sorrow. And it’s your choice what you want to lead with, but it’s okay to have two types of feelings.

Kendra: You hear all the time that you should put your oxygen mask on first. It’s true. You cannot give what you don’t have. But you might wonder how that translates to real life. Lots of us hear “self-care” and we think, “Yeah, right. Not me. Not possible. Not now.” I found the answer is with small steps. I call them “microactions.” These are tiny, easy shifts in mindset or habits that can lead you to a stronger place. This season we’ll highlight a microaction moment at the end of each episode. Some are science-backed and some are from parents who’ve ‘been there.’ Small changes really can change your life. And I hope these make life a little easier.

Lara Wilson: The body is constantly giving us signals and we can cultivate those signals and befriend our experience by just practicing this over and over in these tiny little moments throughout our day. 

Kendra: This is Lara Wilson, a mom who knows mindfulness. She says learning to listen to and be aware of your body is a really simple tool to slow down your day and help you cope.

Lara Wilson: We can step outside and feel the sun on our skin for 30 seconds. We can kneel down in the grass and touch it for 10 seconds. We can feel the air crossing our face. There are so many little things we can do. These mindful moments, that remind us, I am in this body. I have this self that’s me and I can just simply be with myself and that’s fine.

Kendra: I’m Kendra Wilde and this has been A Little Easier, the show that was created to help you find more joy and resilience when parenting is extra challenging. Thank you so much for being here. 

Make sure you’re subscribed to A Little Easier in your podcast app so you don’t miss an episode. And while you’re there, please take a moment to rate and review the podcast, share it with family and friends. We’re an independent show focused on elevating parents because you’re the most important force behind your child’s wellbeing. 

Visit alittleeasier.org for show notes and discussion questions, plus resources on parental burnout and resilience.

A Little Easier is written by Harriet Jones and co-produced by Harriet and Rae Kantrowitz. Sound design and original music by Rae. This podcast is brought to you by Wild Peace for Parents and me, Kendra Wilde.