In Part 3 of their in-depth series on the impact of a psychiatric crisis on the family, the topic is the parents’ perspectives and stories of the intricate roles of a parent when dealing with a child with mental health issues. Two guest parents speak with unflinching candor and deep personal knowledge about their family experiences. Over many years, their challenges have evolved into rich insights relayed with unflinching candor and deep wisdom. The delicate relationships with their child and themselves resulted in hard won advancements through the communications, skills, self-knowledge, and changes needed to support a child into recovery. Please join Helen and Valerie for this landmark episode—their 50th episode of Mental Health: Hope and Recovery!
Find Helen and Valerie at https://www.mentalhealthhopeandrecovery.com
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The Family Dynamics of a Psychiatric Crisis Part 3: The Parents' Speak
Episode 50
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Helen Sneed: Welcome to our award winning podcast, Mental Health, Hope and Recovery. I'm Helen Sneed.
Valerie Milburn: And I'm Valerie Milburn.
Helen Sneed: We both have fought and overcome severe chronic mental illnesses. Our podcast offers a unique approach to mental health conditions. We use practical skills and inspirational true stories of recovery. Our knowledge is up close and personal.
Valerie Milburn: Helen and I are your peers. We're not doctors, therapists or social workers. We're not professionals. But we are experts. We are experts in our own lived experience with multiple mental health diagnoses and symptoms. Please join us on our journey.
Helen Sneed: We live in recovery.
Valerie Milburn: So can you this podcast does not provide medical advice. The information presented is not intended to be a substitute for or relied upon as medical advice, diagnosis or treatment. The podcast is for informational purposes only. Always seek the advice of your physician or other qualified health providers with any health related questions you may have.
Helen Sneed: Welcome to episode 50, the Family Dynamics of a Psychiatric Crisis Part 3 the Parents Speak Challenges, Roles Impact thank you for joining us for our 50th episode. 50th Valerie and I are delighted and somewhat astonished to have reached this landmark. This is the third of our five part in depth series about the family in times of psychiatric crisis. To represent all points of view. We featured spouses, siblings and caregivers in our first two episodes. Today we'll focus on parents of a child with mental health issues. In future episodes we'll hear from individuals with mental health challenges and then from a professional family therapist. Our overall goal is to define and demystify the impact of mental illness on the family and to enlighten and strengthen the impact of the family on mental illness.
Valerie Milburn: Today we'll hear from parents of children with mental health issues and we have two exceptional Guests both will discuss this delicate subject with candor, wisdom, and years of firsthand experience. Our first guest Today is Julie McElrath. Julie is the President and Chief Cause Officer of the Clean Cause Foundation. She received her Master's degree in Social work from the University of Texas Steve Hicks School of Social Work and her concentration was in Nonprofit studies from the RGK center for Philanthropy and Community Services, also at UT Austin. She is an innovative leader focused on strategy, systems change, and social impact. Julie has 30 plus years of leadership roles of for profit and nonprofit organizations, including the past decade in various leadership positions as chief executive and board member. She is skilled in leveraging partnerships, stakeholder engagement, and resources to deliver outcomes. And she is known for her collaborative approach to create change. Julie is resolute in her commitment to volunteer work and centers her service on efforts that impact system inequities. So here we are. Julie, we're so glad to have you. Thanks for joining us.
Julie McElrath: I am so glad to be here. Helen and Valerie, the work that you're doing and the, the initiatives
Julie McElrath: and the hope and recovery that you're bringing forward through this podcast is invaluable. So thank you for having me here today.
Valerie Milburn: Well, we sure appreciate it, and it's really nice to have another generation of your family with us. You know, we had your wonderful daughter Kaylin with us, and we're just so glad to have her. Mom, my dear friend. You know, Julie will let our listeners know you and I have been friends since 1990 because our girls were born in 85 and we met when our girls were 5. So it's.
Julie McElrath: And we were just, you know, 15. Just kidding.
Helen Sneed: Yeah.
Valerie Milburn: Yeah, we were 15. Yeah. So we're just going to jump right in.
Julie McElrath: Sounds great.
Valerie Milburn: And, you know, you have had quite a journey with mental health challenges with your child, and we would love to know just some idea of how long it's been since your journey began and how many years it lasted.
Speaker A: Yeah.
Julie McElrath: You know, I'd have to say that as it relates to the journey with my child's mental health, that I first became aware of it. And it's what I would call the pink flags when she was around 8 or 9 years old. @ that age, I began to notice certain behaviors that seemed off, if you will, but didn't fully raise the alarm bells for me. She had eaten certain foods in specific patterns, like feeling the need to do things evenly. She might, you know, chew evenly on each side of her mouth when she took bites of a particular, you know, of food, engaging in other repetitive behaviors to Keep things balanced. And while those specific things didn't continue into adulthood, other disordered eating behaviors emerged and intensified as she got older. These struggles with food and body image became more pronounced in her early 30s. And that's when it really manifested into a more serious and diagnosable condition, if you will. From the time I first noticed the early signs to the point when she was in her 30s, we were fully addressing that eating disorder. It spans some time, if you will, from the time where we saw those pink flags to the time where it eventually culminated in the need for serious intervention and support. As you might imagine, our journey was filled with ups and downs, moments of progress and setbacks, Lots of learning on both of our parts.
Helen Sneed: You were talking about this. Did you ever lose faith in her ability or capacity for recovery?
Julie McElrath: This is likely to sound overly optimistic, however, I never lost faith in her ability or capacity for recovery. One of the things that gave me confidence was her personality. It's what I saw in her from the time she was a small child. For better or worse, she was always incredibly determined, no matter what I chose to do. And even as a small child, when she set her mind to something, she stuck with it.
Valerie Milburn: I remember that about. Yeah.
Helen Sneed: Well. And it also, for me to know that she had a mother who believed in her fully must have made a difference in her ability to recover. It's very impressive and frankly, quite moving. So there were specific turning points when you felt hopeful, I guess. Well, it seems. It sounds like you never really lost hope.
Julie McElrath: Absolutely. Absolutely. There were specific turning points when I felt hopeful. I will say this again. I believe that my daughter is truly a warrior. Even in her most painfully difficult experiences, she demonstrated incredible bravery. And again, that determination came through. An early turning point I remember was when she began therapy. That relationship, of which she has a long standing relationship with her therapist, I believe became the foundation of her healing and the springboard for many other positive change changes she made. It gave her a safe space to explore her struggles and then over time, allowed her to build tools and navigate her life in a healthier way. Another turning point was her recovery with her substance use
Julie McElrath: disorder, her alcohol abuse disorder. You talk about building a set of tools during that process. She built a whole chest full of tools that she used as she began to then enter into the recovery from her eating disorder.
Valerie Milburn: Yes, those tools from that side of recovery. Absolutely. Support mental health disorder recovery. It's. They go hand in hand. You know, you mentioned the pink flags. So when you look back on those flags that you did see, can you Say some of the flags that you missed.
Julie McElrath: I think some of the flags I missed would have been this underlying anxiety that I think I just missed because I didn't really, at that time understand what the. You know, how to attach some of the things that I might have thought were just her being a little anxious or cautious to being anxiety. She really struggled with anxiety. And because she was so determined and so tenacious and met challenges, she often did not present on the outside with those signs of anxiety. However, it was happening all on the inside for her.
Valerie Milburn: I think that's, you know, I can relate to that. You know, when you said it was. You think it was overly optimistic to never have lost hope. You know, when we interviewed Malcolm, my husband, whom you know very well, actually, when Malcolm was talking about people who supported him on the episode, he was talking about you, Julie. He was referencing your support. So he said that he never gave up on me because I'm a tough Texas girl. So I think that, you know, belief in someone is important, like. Like Helen said. But the anxiety for me also looked like just being tough and determined, but didn't really show on the inside. So I can understand how that can be missed.
Helen Sneed: You know, I just. Again, it's that concept of a double life. You know, she looks so great from the outside, and then no one can understand the turmoil until it stops or stop me dead in my tracks.
Julie McElrath: The most valuable lessons I learned related to my child's mental health came from a combination of my own education and training, as well as, again, those close professional and personal relationships I had within the mental health and substance use disorder field. If I had not had that, I might reach out to nami.
Helen Sneed: NAMI is a good place.
Julie McElrath: You know, NAMI is a great place. I might reach out to somewhere like Communities for Recovery. If it is a substance use disorder, you know, support I'm needing. I would go to larger organizations that I felt like could direct me in places that, dependent upon my needs, could provide some help. Quite honestly, I'd probably start with nami.
Valerie Milburn: Yeah, national alliance of Mental Illness. We talk about them and refer to them all the time. That's how Helen and I met. So none of this would be happening if it wasn't for national lines of mental illness.
Julie McElrath: Yeah. But I say one more thing about that, too. So I would say dependent upon the age. If you've already got a child engaged in services and you're looking for. For additional services, reach out to your child's current service provider. If you have a trusting relationship with that person or Organization.
Valerie Milburn: I think it's really important that you said that because often family members, I'll speak from my own experience, family members often will not have trust in me. I'll talk about me, in me. At that time, you know, that I knew what I was talking about, about my disorder because I was so impaired. But even though I was impaired, it was happening to me and I was working with professionals. And so it's very important that you say that, that you learned from your daughter.
Helen Sneed: Well, the other thing that we always stress is, and it sounds like you really did this and, and your daughter too is education.
Julie McElrath: Yes.
Helen Sneed: Learn everything you can about the illnesses and treatment and everything.
Julie McElrath: Yes. And I will say my daughter's knowledge of that gave me enough information too to go out and do my own journey, educating myself more so that I could understand supports that might be out there for me, for her and to better engage in supporting her.
Helen Sneed: I think that's so important when obviously it sounds
Helen Sneed: to me that you were able to do that because you were so well informed.
Julie McElrath: It was a process, it was a learning process. And I do want to say to family members, it can be overwhelming. Understand that mental health is a journey and recovery from mental health is a journey and a process and it's a nonlinear process.
Helen Sneed: Julie, what symptoms or aspects of her illness challenged you the most and how did you handle setbacks and how do you handle them today?
Julie McElrath: So the symptoms of my daughter's eating disorder were the things that were most particularly challenging to me. Especially because I didn't initially fully understand the range of nuances associated with an eating disorder. I had a limited understanding of what an either disorder truly entailed. It's psychological, it's emotional and it's physical. At the time, I had never personally worked through my own issues with disordered eating. There's that mirror, right. So I approach my daughter's experience from a place of ignorance, which in hindsight came with a degree of denial and unintentional disregard for the gravity of the situation. Right. I had not addressed my own eating disorder. So my own undiagnosed struggles with disordered eating became a challenge for me as it meant I wasn't equipped to approach my daughters recovery in a healthier, informed way. I realized in order to support her through this journey that I needed to first do my own work. I needed to begin the process of my own work.
Valerie Milburn: Julie, that's huge. That's just a beautiful thing to say. What a way to support your kid. That's incredible.
Julie McElrath: It was something, I mean, all the Things came flooding back to me as she began to open up. I mean I was so in my eating disorder. For her 10th birthday, I made her a non fat cheesecake for a 10.
Helen Sneed: I think very familiar.
Valerie Milburn: I think I remember the cheesecake. I was, I was probably at her 10th birthday. That's fifth grade. The girl inseparable in fifth grade.
Julie McElrath: Yes.
Helen Sneed: This is amazing. Now, were you able to tell your daughter that you had your own issues and did you guys share this together?
Julie McElrath: When she began to really get into the rec. Her own recovery related to her eating disorder. It was obvious. It couldn't be more obvious, you know, and, and she began to open up to me and you know, we had the. I had the opportunity to make amends and I hope continue to make living amends to her and support her. You asked about setbacks.
Helen Sneed: Yes.
Julie McElrath: I had to remind myself with the setbacks and I had to practice my own codependency recovery that this was not my recovery, it was hers. So there was moments I might, the little, you know, whatever back here was saying, step in, rescue her. I knew that if I did that I would reinforce the message that I didn't believe she could overcome her own challenges.
Helen Sneed: I think that's a very, very sophisticated and intelligent assessment of the situation because it's not, I'm sure it's very difficult to know when to intervene and when to let her Carter on course. Julie, what was the most precious attribute of your child that you feared you'd lost forever?
Julie McElrath: What I feared the most was that she had lost the ability to love herself.
Valerie Milburn: Oh.
Julie McElrath: To truly see herself wholly and completely. To believe in her own worth and to recognize her beauty. And now the tears come.
Valerie Milburn: Yeah, they already came. Yeah.
Helen Sneed: All three of us.
Speaker A: Yeah.
Helen Sneed: That is so lovely. Thank you for saying that. I think a lot of our listeners will, will, will appreciate hearing that.
Valerie Milburn: Yeah, it's really beautiful.
Valerie Milburn: So knowing that she didn't lose that ability and that she's in a really good place today, do you worry now that she'll slip back and if so, what do you do?
Speaker A: Yeah.
Julie McElrath: You know, today and gratefully. And I'll speak to gratitude again, you know, as we, as we continue to visit. I really don't worry about her slipping back. And let me tell you why. It doesn't mean she won't. Let me be clear. I really understand that. It does not mean that she won't. She has built a very well stocked toolkit that supports her physical and emotional health. It ranges from strategies and resources that she has cultivated now over years through her Recovery process strong 12 step community therapists, trusted physicians, you know, her family, friends, colleagues at work. You know, my daughter has been so.
Speaker A: Open.
Julie McElrath: About her own personal journey that, that she is really advocating by the way she lives her life. In addition, as we mentioned earlier, she's, you know, she's built skills that include DBT and CBT and other therapeutic interventions. She practices yoga and meditation. She takes hikes. She, you know, she engages with her child and in her family and when things happen, get stressful, she steps away. She practices self care and knows when she needs to rest. Does that mean that it is all sunshine and rainbows?
Valerie Milburn: No.
Julie McElrath: No.
Helen Sneed: Well, this is, this is sort of like a lesson in trust, what we're going over, but I think we're going to switch now, Julie. And can you tell us more about your life today, the impact that these experiences have on your role as a, as a parent and in your work life and, and out in the community.
Julie McElrath: So I am likely to maybe be tearful again.
Valerie Milburn: You'll probably bring us along with you.
Helen Sneed: We'll join you. We'll join you.
Julie McElrath: My life today is deeply shaped by the journey of my family. And I am grateful that I have experienced recovery through our family. It has influenced my role as a parent. It has influenced my professional life, and it has influenced the work I do in the broader community. When I finished my degree at the University of Texas, I did not intend to go into the field of substance use disorders and recovery.
Valerie Milburn: Really? I didn't know that.
Speaker A: No.
Julie McElrath: I was very interested in neurobiology and neuroscience and I was heading that direction. And then my family had our first experience with substance use disorder in a way that we really needed support. And in my final semester of my graduate school program, I was reaching out to Valerie Lori Hollerin Steicher, who was, who has been my closest friend and was a professor. And I worked for her at the university and said, lori, I need help. We need help. My family needs help. And the help that we received and the safety net that I didn't realize was there in the recovery and mental health community that lifted us up is the reason I am in the field that I am in. Because I knew at that time that it was the next step for me. Those events not only deepened my understanding of substance use disorders and recovery, but completely reshaped the direction of my, of my life as a parent. The journey fundamentally transformed my perspective. The old rules, if you will, will, and the approaches that I had taken no longer applied.
Julie McElrath: I realized that supporting my family's recovery required introspection and personal growth, which I have been sharing during our time together. It wasn't just about helping my child. It was about looking inward, looking at myself in the mirror, identifying the areas where I need to change, and fostering a healthier environment for my family. So it's those lessons that I today carry into my work where I am deeply committed to creating meaningful change in the field of substance use disorders and recovery.
Valerie Milburn: Well, you are definitely doing that now on a very wide basis. And you know, we have already told our listeners about the roles you play now in the recovery community and you are touching so many people. But I hope you remember how you touched me and supported me during my mental health crisis. I mean, Helen, I know you don't know this and our listeners certainly don't know this, but more than once Julie patched me up from self injury, sobered me up by putting me in her bathtub and giving me a bath and putting me in fresh clothes and taking me home. So she's been supporting people in their mental health crises and their recovery journeys for a lot longer than just since she got her degree and entered the community professionally. So thank you again, Julie. And I'm laughing about it, but it's only so I don't start sobbing.
Julie McElrath: So Valerie, you know, I don't know that I've thought about it in this way ever before.
Valerie Milburn: Yeah.
Julie McElrath: Actually be that your, those experiences, those times that we had together were the entry point into where I am today, even prior to my family's own experience.
Helen Sneed: That's extraordinary.
Valerie Milburn: It is extraordinary. You know, and we've, I've learned, you know, shall not regret the past, nor wish to shut the door on it because so much can come from the past. And to hear that is just another reason that I never say why, why did that happen to me? Because so much good has come from, from my struggles. And thank you for saying that. It really means the world to me.
Helen Sneed: I'm going to ask you a question that is going to sound a little simple minded because you have already given so much to us today in terms of just telling us about your life and being so candid and so gracious and so generous with what you know. But if you had to narrow it down, what is the most valuable knowledge you have for parents in the same situation today?
Julie McElrath: It would be to know that they are not alone. Because it can feel like you are all alone. And sometimes as parents, when we're in that space. And I've shared my own journey of, you know, my disordered eating in the midst of supporting a child with an eating disorder, whether it is our own mental health as parents, whether we're supporting a partner with mental health challenges and or navigating our own child's needs, there are resources, there are strategies, and there are communities that can support you. Some things that came up for me when I was thinking about your question, Helen, was connection is crucial. Build a supportive network. Reach out to those organizations that, you know, I mentioned, nami, that can lead you in the direction of where a parent group might be. This could also be family members that you trust and will open up to and friends support groups. There are now online communities that you know, I know by way of the work I do and by family members that you know. There are some online communities that, that individuals are finding very helpful. Seek professional help. And so I would say reach out, practice self compassion as parents
Julie McElrath: with a child that is navigating mental health challenges, there is a lot of shame and blame that we place on ourselves. Love yourself, tell yourself you're doing everything you can with all the best of intentions to help with the information you have at the time. And it may be limited and you may not know much and you're reaching out in the best ways you know possible. Be gentle with yourself. Focus on your progress and not perfection. As parents, we will never do it. We will never be perfect and we will never be able to give our child every single thing they need. It's not possible. And we can do the very best job we can.
Helen Sneed: Well, that's pretty valuable knowledge. But then this whole conversation has been so valuable. And you know, we're called mental health, hope and recovery. And so the final question, Julie, what gives you hope?
Julie McElrath: Quite honestly, it's seeking joy in the small moments.
Valerie Milburn: That's beautiful.
Julie McElrath: It is. Living in today, being grateful for today. I have to remind myself often that I have no control over what's ahead. I hardly have control over what's in today. However, I can be in the moment and I can find joy in those moments. You know, yesterday was a snow day here, a snow day here in Austin, Texas. And I get up early and it was still dark outside and I could have just gotten dressed and walked into my home office where I am right now and start my work day. And after I made my coffee, which is a joy ritual for me, I decided I wanted to walk out in my front yard and just be in the moment of a day that doesn't happen very often here in Austin, Texas. And it was quiet and there was some sleep coming down and the Light reflecting off the snow gave me a different look, you know, in my yard and down my street than I typically get. And I just thought, well, this is glorious. And it was a small thing that I started my day with.
Valerie Milburn: Hey, Julie, you can write my next mindfulness exercise. That was a good one.
Julie McElrath: Joy can be a pause.
Valerie Milburn: Yes.
Julie McElrath: And that brings hope.
Valerie Milburn: And you have brought hope to many today. You've shared so many nuggets of helpful information and, you know, beautiful sentiments that you have had about recovery in your family. And I just can't tell you how honored and grateful and happy you know that you've been with us today and shared your journey and your time and your compassion and your love and just thank you so much, Julie, I think.
Helen Sneed: Sorry, Valerie, I didn't mean to interrupt you. Julie, what astonishes me, really, is that through your comments and your. Your attitude and your language, you've made the experience of a parent very accessible to people who aren't parents, say, to someone who is in your daughter's position or someone who is treating a family or whatever. And I think that this is, again, it's. You've just made this, your experience and your knowledge very universal. And I would imagine that's one of the things that we desire most for our work here. So thank you.
Helen Sneed: Thank you, Julie. Thank you for sharing your stories and your great knowledge. You've enriched our understanding of what it's like for a parent and how to triumph over adversity for your child and yourself. And now it's my unique pleasure to introduce our other guest, Karen Rainas. Karen Rainas has a long history as a professional in the mental health field, as a mental health strategist, trainer, presenter, and innovator. Her roles have included executive director of mental health nonprofit organizations and as a change maker in criminal justice mental health services. In these capacities, she has been a support to thousands of people in the mental health community. Well, I think that this is too modest. I first met Karen 10 years ago when I'd moved to Austin after 40 years in New York City. I was lost and homesick until I volunteered at the national alliance for Mental Illness NAMI Austin. There I met this dynamic, brilliant young woman who was executive director of nami. Her leadership skills were as irresistible as her friendly welcome. And I was swept up by her enthusiasm and her vision for the organization and for expanding its reach throughout Central Texas, which she did in great leaps and bounds. NAMI flourished under Karen and so did I. Volunteering for her was a huge component of my recovery. Karen, welcome to Mental Health Hope and Recovery. It's great to have you here. So, Karen, welcome. And let's begin at the beginning.
Speaker A: Well, thank you. Thank you for the invitation. I'm looking forward to the conversation.
Helen Sneed: Well, we're delighted to have you, as I said. And so here we are beginning. The first one is topic is you had quite a journey because of mental health challenges in your child. Can you give us some idea of how long it's been since your journey began and how many years it lasted?
Speaker A: It sort of surprises me when I even say it, but it has been about 16 years.
Valerie Milburn: Wow.
Speaker A: Since that journey started, and it very much started, I have to think back because I often look and count from the time of crisis. But the reality is I actually have to go back at least a couple of years when the early onset really started, when we didn't really know what it was that we were actually contending with, when I didn't really know what was going on. And so here we are 16 years later, and my teenager is now an adult, so she'll turn 33 in March. And so it's been a number of years. And the reality is that she lives with chronic depression and anxiety. So it's not like there's been some end. What has changed is obviously, like many other health issues, there's a trajectory of it. Right. There's a maturity that Happens both for her and certainly for me as a parent.
Valerie Milburn: Yes. And I want to say hello too, and welcome back.
Speaker A: So thank you.
Valerie Milburn: Looking back over that long journey, Karen, are there specific turning points that gave you hope?
Speaker A: Yes, definitely. I often tell the story of not even realizing that I hadn't seen or heard my daughter experience real joy in so many years, in those early onset years and then into the crisis and beyond it, that I always remember that I literally ran into the room because I was on the other side of the house. And I ran into her room because I heard her laughing. But it was a real laugh. It was like this authentic laugh. And it wasn't until that moment that I realized that
Speaker A: I hadn't heard that sound in so long. And so I ran into her room and I looked at her and I said, you're feeling better? And she looked at me and she said, yeah, I think I am. And I think it was that moment for her as well. So I think that certainly was that moment of giving me hope that it would get better, that the tide was starting to turn. But when I look back, I think the other place of hope for me was really when I encountered nami. So the national alliance on Mental Illness, I think that gave me hope, and that was deeply rooted in just the education piece. I'm a big proponent that one of the things we ought to be doing is educating parents around mental health. Right. And helping them to understand it as the health issue that it is. Because until that time that I deepened my understanding of it as a health issue, I took responsibility for the fact that she was not well, and that's not healthy for our relationship. It wasn't healthy for me because essentially what I felt was I had failed as a parent. And that's why she had reached that point of crisis and that's why she was where she was. So educating myself and NAMI helped that through their Family to Family class that I took. And I will say, like, for folks that don't have a NAMI in your community or don't have access, that's okay. There are other ways to educate yourself. Podcasts like this, like back then, there wasn't that in existence, but books, all kinds of different things that you can do to become better informed so that you can get to that place of understanding that one, it is a health issue and that recovery is possible. Connecting at NAMI on two levels, the education, but also getting the opportunity to connect with other family members who are navigating similar experiences. We are hardwired for connection and so one of the things that our family experienced early on in the journey was isolation. Some of it, I will own, was self imposed, but certainly some of it was what we experienced from people who knew us, who just in the way that they responded to us, said, oh, like we're not okay. Like there's something, like people are concerned, there's something wrong with us. And we definitely self isolated. We, we did the protective thing. We're going to hunker down. I was going to protect my girl, I was going to protect us as a family. We were scared. We felt hyper vigilant. And so connecting with other people and recognizing often say, like meeting all these people and it was like, okay, nobody in this room has horns on their heads. Nobody. We're not bad people. We are families who've been impacted by a really serious health issue. And we are navigating the best we can.
Valerie Milburn: Helen and I talk about education, education, education, but the point you made about how it made you no longer feel it was your fault. That's a point of view that is kind of new to here and I'm so glad you brought it up. So you talked about hope just now. What about, were there times when you lost faith in your child's ability to, to actually have the capacity for recovery? And if you did lose faith, how did you regain that faith?
Speaker A: Yeah, I would say also in the early stages after her crisis. So we almost lost her to suicide. That was the crisis point. And I think like any health issue that gets to that point of crisis, it is hard to recover. And as we often talk about with mental health issues, there's no diagnostic tool that we can gauge like you can with diabetes. Right. It's like, oh, okay, here's where your blood sugar level is. This is how we know what we should give you so that we can get you to a better place. You need to eat this, do this, whatever. And so early on, it was that experience of having to try different medications and the right combination and all of those things because we were trying things and it wasn't working. And it was scary because I felt like every day was a day of she'd gotten to the place where she was really honest with us. And so in those early days, she would often the phrasing that she used was, I don't know if I can do this for the rest of my life. So it wasn't her saying, I want to die, but I knew that that's what was underlying it. So it is scary and it's just a scary place to be when someone you love and care for so much is basically hopeless themselves. And you feel like you're trying different kinds of things and nothing seems like it's really quite working. And
Speaker A: I will tell you that it took about nine months post crisis before I finally heard that laugh. And that was nine months of navigating different types of treatment and medication and doing things like, we never left her alone for more than a few hours at a time. So my husband and I were. We navigated our schedule, so we were home at different times, so we never left her alone. And we were getting her outside and going on hikes and doing lots of physical things and making sure she was eating as healthy as possible. And so I definitely. I know I clearly remember one time my husband and I looking at each other and just basically saying, it may never get better than this. She may never go back to college like this may be. And we are prepared to do whatever we need to do to support her in that. But it was heartbreaking. There was a lot of grief that we experienced, and I think there was a lot of grief that she experienced, sensing, like, the future is not what we thought it was going to be. And so there was definitely that time when I feel like I lost some of that faith. I'll be honest with you, I tried not to let it show with her. In fact, there were many times when I would say, it's okay if you don't have hope. I do. And inside I was like, I'm not sure how much hope I have left. I had days when it was tiny, but it was a seed.
Helen Sneed: But you've come through, and the way you've come through it, and your daughter is extraordinary and sort of playing off of what Valerie just asked you. What relationships, coping skills or strategies sustained you most during the arduous years that you just talked about that it took for her to overcome her illnesses? I mean, and are there still some that you use today?
Speaker A: Yeah, I would say one of the most important things that I learned, one of the most important, I guess, coping skills, was taking care of myself. You know, I think so often when you move into that caregiver role, it's easy to lose sight of yourself. And the reality is, one of the things that was most important in my role was to be the best version of myself. And I needed to take care of myself in that because it's easy to just get totally engaged. And I'm going to be real honest with you. This is me looking back and wishing I had done more of that. Because in that moment, I know it was all about her. But I did have to learn to spend time with my own friends, do things for myself, get enough sleep, take care of my own health. And one of the things I had to lean into was I recognized pretty soon after that that I needed some therapy for myself. And I need. I mean, it had definitely brought to the surface some things for me, but also for my husband and I. Together, we found ourselves needing to seek marriage counseling as well. I think communication was also important. We recognized in the midst of her recovery that we had become a family that wasn't good about communicating our actual feelings and experiences. And so that helped us do that as well. It helped us to give the US the courage to be honest and about what we were navigating.
Valerie Milburn: Well, it sounds like the therapy and the things you just talked about helped you learn a lot about your child's condition. What other things helped you learn about the conditions she was living with and help you understand, you know, some of the difficult behaviors that she was going through. Because often the behaviors that accompany mental health conditions such as mine anyway, can be bewildering and frustrating. So where did you get that education?
Speaker A: So Nami definitely helped again. I mean, that class definitely helped a lot. Sarah also had been diagnosed with an eating disorder. And the curriculum that Nami had really didn't cover that a lot. So having doing a deep dive into that, really a lot of reading about that condition helped a great deal. I've read a number of memoirs as well as just, you know, general education, which I think really helped because that was a perfect example. It was really hard sometimes when Sarah was honest about to hear some of her own self talk, you know, to hear that she really didn't think she had value and that she was worthy and all of those things, because it's like you look at what you've done as a parent, you know, and loved and nurtured this child, and you just, you know, it's heartbreaking to imagine that they have those thoughts about themselves. So getting to that place of understanding that what I was hearing was not Sarah, but it was her depression and it
Speaker A: was her anxiety and it was the eating disorder. That's what I was hearing, not her.
Helen Sneed: Do you have any advice, Karen, on how to assess the efficacy of your child's therapy and treatment providers to determine if your child is getting the right professional support?
Speaker A: Well, I would say that there's a lot to be said for trusting your gut on that one. I'm just a big believer that because These things are hard to measure. Right. Like, sometimes we can tell, but difficult to measure. But I would say trusting that gut, like, just makes a lot of sense. And I think even when we're talking about as a parent, you know, I had a, you know, an 18 year old at that point in crisis, and then I think it was the crisis that helped me to be better about listening to her as well and engaging her in the recovery process and really bringing her into the conversation, which I hadn't done because it was a lot of, like, me making my husband and I making decisions right. About that, but trusting my gut and then really engaging her in that as well. In terms of what was her sense of how she felt about how things were going and really engaging her in, you know, I don't think it works when you've got a child, whether they're a young adult or a child, who basically is not comfortable with a provider, whether that's a therapist or a physician, because it's just like any relationship, if they're not comfortable, it's not going to work. So one that's got to be a relationship that they're also comfortable with. I think trusting your gut and then watching for those signs of improvement, like, I think that's one of the things that tells you, are you moving in the right direction? Recently she had a situation in which she's had to go back to kind of address some things that had come up. And she asked me to come along to a visit with her and I said, happy to come along. I'm going to sit tight though, and let you take the lead. And it was such an honor to sit in that space with her as she pulled out her notebook and she very confidently was able to talk about what was going on. The doctor made a recommendation and I know inside I'm thinking, oh, I don't know, that doesn't sound like a good idea. But I was keeping my mouth shut. Right. And then it was so great to hear her say, yeah, I don't think we probably need to do that at this point. I'd rather sit tight with, let's give this another month or two and see how this is going and then I'll reconsider that as an option. But I'm not ready to make that change just now.
Valerie Milburn: It is your daughter.
Speaker A: Too.
Helen Sneed: True.
Speaker A: I was a proud mama in that moment because it was like, yes. And so I think that's critic. That's where the education, I think, also comes into play is being able to be confident in saying, yeah, we're not really comfortable with that approach. We're not sure that that's where we need to go right now.
Valerie Milburn: So can you talk about the stigma? There's still so much stigma surrounding mental illness. It's getting better. We know it's getting better. More people are open about it. But how did you come across it and how did you deal with it then and, and now? What's it like now?
Speaker A: I think it was interesting. I always remember talking about my children, talking about my daughter's experience once at an event, an educational event at a school, and the librarian that was there was at the back of the, of the room because she worked there. And afterwards she came up to me and it was a woman that I knew from church, so. And I'll never forget what she said to me because she said, thank you so much for sharing your family story. She said, I have to be honest with you, you know, for years we've sat behind you in church and watch you with your little girls, and you guys just look like such a perfect family. HELEN LAUGHS yeah. And I know that the comment was well intended. Right, Right. But to me, that was the, that was the indicator, right, that you, you can't be a perfect family if something like that is going on. And it was where I, why, how I had the wherewithal in that moment to respond, I'm not sure. But I just said, well, we are a little bit of a perfect family. We just happen to have a serious health issue that we navigate. So lots of perfect families navigate many, many things, you know?
Helen Sneed: You know, that's terrific.
Speaker A: I think sometimes people just didn't know what to say. Right. Or what to do. And so many times people didn't say anything at all. And so that's what led to some of the isolation was because people don't know what to say.
Speaker A: And then they just don't. They don't do anything. Right. They just don't respond at all. And then there's this awkwardness. But I will tell you what finally made the difference, was it goes back to the education and gaining the confidence and recognizing that we were not at fault. This was, this didn't happen because we were bad parents any more than if she developed diabetes, that it would have happened because we were bad parents, you know, that it was a health issue. And when I got to that place of confidence, I always remember the very first time I was to, able, able to utter the words and to say to someone when they asked me, unknowing about what had happened to Sarah, that They just happened to ask, because for a long time, when people would ask me how she was doing, I got to that place where I would say, oh, she's fine. And I would like next subject. But somebody asked me, so how's Sarah doing? And I said, well, actually. And I started to share the story, and I said, but here's where we are. And she's, you know, we're. We're on this journey and we're making progress. And that person said to me, oh, my gosh, well, I am so glad that she's okay. Tell me more. She said, I have a son. And she starts asking questions. And what I began to realize is that as I started beginning to feel more confident in sharing the story, that literally what would happen is people would open up almost immediately. Oh, me too. Me too. So going back to the stigma, what I want to make sure that I stress is that sometimes the stigma and the shame was rooted in me. And so when I responded in a way that basically said to people, I'm sort of ashamed that this is happening, you know, we sometimes don't recognize that our own responses and our own bottle, the way we carry our bodies says a lot more to people. So I think we were carrying ourselves with a certain level of shame. Often say it felt like there was a cloud following us. Right. And so when we got to this place where we recognize that, hey, this is. We didn't do anything wrong, we're still a great family. And I still remember saying to our family, this is hard, but we get to choose many things out of our control, but we get to choose one thing. We get to choose what we're going to do with this. And it can either break us apart and worsen our relationships, or it can bring us closer together and we can be a better family. We can be better at who we are. And I choose that. Who joins me in that? Let's choose that. And so I think very intentionally saying, we're going to take that little cloud, we're going to push it out of the way, and we're going to let a little bit of sunshine through and move forward shifted everything.
Valerie Milburn: So we know that. We know that setbacks are part of a recovery journey. Recovery setbacks are just going to happen, and how do you handle them?
Speaker A: So I think the good news is that they are definitely going to happen. Like, we know that. They're just part of the trajectory of it all. Sarah has had two setbacks, and I think the gift of them has been our own growth in the midst of We've learned so much along the way. So I definitely think that we approach them with a lot more confidence in knowing that this is a setback. It's a normal part of the process. It still can be a little bit scary, but we're far more confident because we've navigated it before.
Helen Sneed: Karen, can you tell us about your life today and the impact of these experiences on your basic identity in the role of a parent, in your career, and even out in the community?
Speaker A: My life today has been greatly impacted by that while crushing yet transformative experience that we had in navigating Sarah's crisis. If you had told me, hey, this is going to be. This is what you're going to be doing, you know, in the future, I would have laughed and been like, no. And yet here I am. So talk about basic identity in terms of I am now seen in many places. I mean, just today I got an invitation to speak at a conference. And what struck me even today still like, catches me, which is you were recommended as a subject matter expert in this area you know of.
Speaker A: And so it's interesting to me because part of what transpired is that desire to learn as much as I could and then also recognizing that I wanted to not only have absorbed all of that information, but I wanted to pay it forward. Like, it was this. I almost couldn't stop myself. Like, I want to help other people because I know how hard this was. And so that is what ultimately led to this trajectory of being engaged in mental health and mental health education and now trauma and working for the sheriff's office, leading this brand new trauma informed initiative for the sheriff that I think, I hope will become a model for other law enforcement and correction agencies across the United States. In terms of, as a parent, I think it has changed my approach to parenting. I think I again used to be afraid to have those really tough conversations about really sensitive topics related to mental health and trauma and all those things. And it changed that and it deepened my relationships with my girls. I have three daughters, and it definitely again made me want to engage in the community and where all those places ultimately, at the end of the day, as I moved into this new role, I know I had this checklist of things that were important to me and what I wanted to do in the future, and it was at the top of the list was I wanted it to be about mental health. I wanted to make a difference in other people's lives, whatever that looks like. So it has definitely changed the trajectory in terms of who I am and where Where I work and how I engage with other people.
Valerie Milburn: Well, you just named some amazingly positive outcomes from supporting your daughter through this mental health journey you navigated together.
Helen Sneed: This is a question that I've been wanting to ask the whole time that we've been here. And that is, what is the most valuable knowledge you have to give parents who are in the same situation today? You know so much.
Speaker A: I think the most valuable knowledge that I could give to parents that are in the same situation in which they are overwhelmed, hopeless, fearful. All those things that you can experience sometimes as you watch your child navigate, something that you're just unsure of is that one tap into the resources available to you, whether that's treatments, groups, like I said, if you've got a NAMI in your community, other kinds of support groups, find families that are navigating something similar so that you've got a support system in place. And know this, that I think no time like today has there ever been more possibilities in terms of treatments and knowledge in the mental health field. The biggest challenge that we have sometimes is that there's limited resources as far as we need more people in the field, right? Therapists, you know, psychiatrists, all that kind of stuff. But we know more now about the brain than we ever have before. The stigma is less. All of these things are in place. So there's a lot of good things in place. Place. Educate yourself. And know this. You may not feel like there's hope, but there definitely is hope. Hope is definitely possible. I would also recommend and had an opportunity to play a part in this book, but NAMI has a couple of books out now, so one of them is called you'd are Not Alone. And that one does a whole lot of storytelling, great storytelling for families. I have a section in there and then they just released and I'll be honest, I haven't seen it, but if it's as good as the first one, they have a brand new one that's called you're not alone for parents and caregivers. So it's a guide to navigating your child's mental health. So if you don't have a NAMI or some other kind of resource there, that is a they, they've got some great books out there that you can access.
Valerie Milburn: So.
Speaker A: Feel confident in knowing that there's some, there's some, all kinds of wonderful possibilities and that hope is like, there is hope.
Valerie Milburn: Thank you so much.
Speaker A: Oh, you're so welcome.
Valerie Milburn: You just had so many wonderful things to say. Our immense gratitude goes out to Julie and Karen. They both contributed just incredibly significantly to our understanding of the conflicts, education, and hopes of parents everywhere.
Helen Sneed: We are incredibly fortunate to have had both of them.
Helen Sneed: And now we're going to bring you to our traditional mindfulness exercise led by Valerie.
Valerie Milburn: Thank you, Helen. Yes, I will do something just a little different today than our traditional mindfulness exercise. And this is because in the past few weeks, several friends have asked me about meditation. These conversations have been about wanting to start meditating but not knowing how to begin, and about not having been successful in the past, but wanting to try again. And all of these friends wanted to know what works for me. Well, the key there is what works for me, because what works for me may not work for you. But I do have some suggestions today because meditation is as individual as the person who is doing the meditating. I believe everyone can find a successful meditation practice for themselves. What do I mean by successful meditation? A meditation practice that becomes part of our routine and allows us to reap the amazing benefits of of meditation is successful, however it is achieved. The good news is that research shows we can reap these benefits with as little as 10 minutes of meditation a day if done consistently. That is solid research from numerous sources supporting this 10 minutes of consistent daily meditation bringing benefits. Now, setting a timer for five minutes to get started is an excellent strategy. Now, what are those benefits of meditation? Well, meditation reduces stress, anxiety and depression symptoms. It improves concentration, clarity, and helps with more effective processing of our emotions. And I know I need that. It allows me to live in the present, to take things one moment at a time and to find joy in those moments. Meditation isn't magic. It isn't formulaic. It isn't sitting cross legged and saying, though it could be sitting like that and saying, if that works for you, because again, it's what works for you. But I'm going to share one thing today that works for me. It might be helpful. I'll share one more next episode. The one thing that nearly everyone who meditates agrees on that is effective is that meditation focuses on our breath. My meditation always centers around my breathing, starting with about 10 diaphragmatic breaths. We practice diaphragmatic breathing here on the Mental Health Hope and Recovery podcast during our mindfulness exercise at the end of every episode and an introduction to diaphragmatic breathing is in episode one. Check it out. A very effective meditation practice that I have developed for myself over time is setting an intention for my meditation. If I'm dealing with a current stressful situation or a hard challenge, or maybe Struggling emotionally in my life, I choose a few words to focus on As I breathe. I choose one or two positive words that represent attributes or attitudes that I want to incorporate into my mindset and behavior. And I choose one or two words that represent a mindset or behavior that I would like to eliminate or more realistically, reduce. So as I inhale to the count of five, I focus on the words that are positive, and as I exhale, I focus on the words that represent the behavior or mindset I want to eliminate or reduce. Let me give you an example. Currently, my house is under a remodel. I've been irritable and impatient, and I have not stayed in acceptance and gratitude. So my meditation has been to breathe in the words acceptance and gratitude and breathe out the words irritability and impatience. I breathe in thinking acceptance and gratitude. And I breathe out thinking irritability and impatience. I breathe out that irritability and impatience. And as the day goes on, if I find myself getting irritable, I have actually been able to to recall that body sensation of the end of that exhale when my stomach pushes against the back wall of my abdomen and I force out the end of that exhale and I visualize the irritability exhaling
Valerie Milburn: from my body, and it has actually stopped me from going into irritability. That is a successful meditation, and I wish us all our own individual, successful, consistent meditation practice. Thank you for learning about meditation with me today.
Helen Sneed: Well, thank you, Valerie. I've. I've never had anyone just sort of explicitly explain to me how it works for them. You know, I've always had sort of a mystical concept of what it was, so this was really, really enlightening. And also to our listeners, family members around the globe, we feel certain that Julie and Karen have contributed immeasurably through their stories of parenting and their great courage to share them with all of us. Our next episode will be an eye opener. We'll hear from the family members who have mental health conditions. Their journeys and perspectives are sure to be fascinating and incredibly valuable in comprehending their place in the family. Please don't miss them. And now I leave you with our favorite word, Onward.