Mclean Hospital

Podcast: Beyond a Troubled Child – One Family’s Experience With Adolescent Mental Health

September 17, 2019

Trevor discusses bullying and abuse and how both can often be swept under the rug in families. Then we hear from Kate M. and Ralph Buonopane, PhD, program director of the McLean-Franciscan Child and Adolescent Inpatient Program.

Kate details her experience raising two children with mental health issues and discusses her struggle to find the right help and fight the isolation she and her children experienced in their community.

Ralph, having treated Kate’s son, offers his perspective and also shares tips for parents with children who are struggling.

Episode Highlights

  • Kate describes the reality of having children with mental illness (14:31)
  • Ralph discusses the condition of most children when they arrive at an inpatient mental health program (20:18)
  • Kate explains that the public school system isn’t equipped to handle children with complex emotional issues (23:29)

Relevant Content

Episode Transcript

Trevor: Welcome to Mindful Things. Welcome, new listeners. Welcome, returning listeners. How’s everybody doing? I have to record this a little early because I am going on vacation, little staycation, not going anywhere. I prefer staycations. Big surprise, huh?

On today’s episode, we have a dual interview for you. The first person by the name of Kate. I’m not giving her last name because we talk about her children a lot. Out of respect to their privacy, don’t wanna reveal any last names. Along with Ralph Buonopane who has led the McLean-Franciscan Child and Adolescent Inpatient Program at the Franciscan Hospital for Children in Brighton since 2000.

Kate has a really intense story with her children. It was covered in a wonderful article in The Boston Globe. Both of her children are adopted, Olivia and Owen, and both of them have suffered from mental health issues. And Kate has become an advocate for mental health and has really formed a bond with Ralph. And I noticed that the two of them have complete opposite approaches to conversation, and it works really well. I really enjoyed talking with them.

And the story regarding her children is very intense, and I could definitely relate to some of it. I hope you stick around for that. By the time this episode comes out, the movie IT Chapter Two would already be playing in theaters. But last night, I was watching Chapter One with some friends. We’re gonna go see part two together. So, we wanted to kind of refresh it in our minds. I’m a big movie snob, and I’m surprised by how much I like part one. I actually think it’s very good. And for a second time, I was surprised by how much it held up. I think the film lacks any subtlety whatsoever, and that’s a good thing because the themes are really strong about bullying and child abuse and fear and addressing those fears as children.

There’s one scene that, and I wanna make a note right here that I am not shilling for Warner Brothers Pictures. We are not making any money from this. This is not an advertisement. Don’t see the film. We’re not telling you to see it. We’re not making any money. But there’s this one scene where the film is about a group of friends and this clown that haunts them. And every time the clown haunts them, it comes in the form of their worst fears.

And there’s a scene with the young girl, Beverly. She’s in the bathroom. And I’m not gonna go into the details of the gore, but there’s a lot of blood involved and blood everywhere. And her father bursts into the bathroom. He wants to know what all the commotion is. And I should probably say at this point that they not so subtly hint that the father’s sexually abusing her. And there’s blood everywhere. It’s not her blood. It’s a very surreal moment, but the most terrifying thing about that moment is that the father can’t see it. He doesn’t see it. He acts like it’s completely normal. And she’s just sitting there horrified. She’s covered in blood and her father can’t see it. And again, not subtle, but really powerful moment about, you know, I know a lot of adults that were abused as kids. Physically abused, sexually abused. Parents, relative, stranger. And do you wanna know the one thing that most of them had in common? Their parents, whether they were doing the abuse themselves or not, they just refused to acknowledge it. This is something that’s not talked about. It’s something that I think, I hope, and I know saying, “I hope,” is a very dangerous thing to say, but I hope becomes addressed soon. It’s gonna be a very, very, very ugly discussion.

But the scene takes it one step further. The father leaves, and then the next day, all of her friends come over and help her mop up all the blood. Now, the blood isn’t real, okay? But it’s, again, not so subtle metaphor for all the pain, all the suffering, all the fear. But it’s her friends that come over and clean it up. It’s her friends who see what’s going on and are also experiencing some sort of bullying or abuse. They come over. They can see it too, and they’re there to pick up the pieces.

And I didn’t read the book. I tried to as a teenager. I got about 70 pages in and was like, “Yeah, no. Not for me.” I know a lot of people have said that the book is phenomenal. I’m sure these themes are in the book. I know that Stephen King kind of explored similar themes in his wildly overrated book “The Shining.” Hey, he later admitted that he wrote that book on a lot of cocaine. And let me tell you, it sure reads that way.

But I don’t know. I find the film powerful. I really do. It’s horrifying, and it’s scary. I mean, I find most horror films, especially Hollywood ones with not so subtle metaphors and big Hollywood moments and a film score that it tells you how to feel.

Those usually don’t do much for me, but this does. And I think, while not subtle, it’s trying to have a real conversation about not just bullying and not just abuse, but how it’s swept under the rug, and it’s a horrible conversation to have, but I think, I hope we have it one day. So, if you can handle, and it’s gory, and it’s scary. But we watched it with a friend last night. She had not seen it. She hates horror films. Hates them. Terrified, and she watched most of the film with a pillow over her eyes, but at the end of the film with all sincerity, she looked at us and said, “That was really good. I really liked the story.” I’m just gonna say it bluntly. I think that film is just a powerful story about abuse.

And while it could be very, very painful for people who have experienced abuse to watch that film. I found it to be comforting. I found a horror film to be comforting. Isn’t that strange? And I don’t think I’m the only one. So, no, in terms of film or filmmaking, you know, it’s not the greatest thing in the world. I thought director, Andy, and excuse me, if I’m butchering his last name. Andy Muschietti did a real, a real good job trying to make an honest point about the treatment of children. I recommend it. It’s these transitions, folks. I don’t know how to do it. Now, I’ve talked about child abuse and a horror movie, and now we gotta go into the interview. But that was my pathetic attempt at a transition. So, here is me with Kate and Ralph Buonopane. I hope you enjoy.

Trevor: You said that he likes VR because it gives him a chance to escape to another world where he can control which is why I—

Kate: Yeah, it’s sensory.

Trevor: Yeah, which is why I use it.

Kate: Yeah, it’s sensory immersion in a controllable environment, so it’s ideal to escape from here, but yet have to be connected to there because it completely depends on your hand-eye coordination, how much you can experience.

Trevor: Right.

Kate: So, he’s good at it.

Trevor: I try to only do 45 minutes inside at most. A, for my eyes because I’ve realized that between, I’m in front of a screen all day, so all that blue light going into my eyes, I was having problems sleeping. So now I wear, you know, if you ever see me at it, I wear those blue filter glasses now, but I can’t wear them when I have the VR. So, I only try and stay in at about 45 minutes, and by that time, I’m like, “Okay, I wanna go back to reality.” And then after 45 minutes of that, I wanna put the...

Kate: Put it back. Go back in. I wanna go back.

Trevor: So how is everybody doing today?

Kate: I’m doing well.

Ralph: Very good. Yes, thank you.

Trevor: Very good, considering. Was it a sad funeral?

Ralph: You know, it’s one of those stage of life changes, right? Where you see people you grew up with... This was sort of, I grew up with a whole group of neighborhood kids and families, and this was one of the fathers that I sort of grew up with in the neighborhood, and so sort of passing of an era and seeing old friends who we hadn’t been together in a long time, who we had known since nursery school. So it was that mix of nostalgia and yeah.

Kate: At a certain age, you get smacked in the face every time you’re with a group that’s from your past because all of a sudden everyone looks like the old people [chuckle] used to look when we were kids, only now it’s us, so it’s bizarre. It is bizarre. Takes a while to acclimate to seeing everyone with a lot of wrinkles, grey hair, and changed bodies and changed posture.

Trevor: But do you think that people physically, I mean, maybe with lotions and creams and stuff like that. Do you think people visually, physically are aging slower?

Kate: Yes, I do.

Trevor: I love movies. I watch movies from all eras. And I was recently watching Dr. No, the first James Bond film, and when I saw that Sean Connery was 35, I was like, “I don’t know a single 35-year-old that looks... “ Now, Sean Connery was a hard drinker and a hard smoker, and maybe that added to it, but Sean Connery in Dr. No looked like, how I think somebody, today, I would think that Sean Connery if he appeared to me from that era, he would be 50 or 60.

Kate: Right. I know what you mean. I know what you mean.

Trevor: He looked for 35, he looked a lot older. I mean, he’s still a handsome debonair. But that was not 35. And so, when I turned 35, I’d look at myself and be like, “What? Have I not hit adult puberty yet?” Or something. “Why do I not look like. Why do I not have that Sean Connery grizzled look yet?”

Kate: I think the physical changes for me and for women start after 55. And prior to that, it’s just very gradual. But I think around that age what I see in my life is, there’s a lot of physical changes after 55, and that’s the natural state of being for where humans are right now, and maybe in 50 or 100 years. We’ll look even younger at 55. But the technology isn’t there yet. The science isn’t there. That’s what I see. I don’t know what you think.

Trevor: I think people take, in the last 30 years, have taken greater care of their skin.

Kate: I do too.

Trevor: And that’s why they have a youthful look to them. I also think the fact that smoking has been connected with skin degradation, it has become a part of it.

Kate: And exercise.

Trevor: Exercise, yes. I mean, when did, jogging didn’t become a thing until the late ‘70s, right?

Kate: Correct. Let’s say in early ‘70s.

Trevor: Early ‘70s? Yeah, so there’s that.

Kate: It really took off in the ‘70s and then the ‘80s.

Trevor: Yeah. Okay, anybody else nervous about this? No? You guys are old pros at this, you’ve done plenty of interviews about...

Kate: It’s something that you would not have chosen to become an expert in this field. For me, by force, it’s ingrained in my brain now from 10 years of nonstop mental health care. So in 10 years, you can touch a lot of different areas of mental health.

Trevor: For the listeners, can you give me a summary of how Owen came to you and the situation regarding his mental health?

Kate: Oh, I have two children that came to me the same way. We adopted one child as an infant, and she was an absolute delight and progressed normally in her development and her behavior. When she was about five or six, there were a few little things that were problematic in her pre-school and school environment but nothing dramatic. And at that time, we decided to adopt a second child, so those first five to six years with her were wonderful in general, and we went on to add to the family by adopting Owen, the second child. Both kids had had a strong prenatal history of exposure to toxic substances through their biological moms and we knew that, but both babies were neurologically intact, both had normal infancies and normal early development, so there were no signs of that toxic exposure causing future problems.

Trevor: Right.

Kate: So, we adopted the second child, and it was wonderful, but when he turned approximately three, we noticed that there were some aspects of his behavior that were not typical. He developed severe rage with things that shouldn’t have pushed him over the edge as a three-year-old.

Trevor: Give me an example of one of those things.

Kate: He might be eating his lunch in the high chair and he wanted you to take something off of his tray, and if you didn’t do it quick enough, he would scream at the top of his lungs or...

Trevor: Was he afraid of that thing?

Kate: No, it’s just, he became very... I don’t know if it was sensory. It might have been sensory, maybe he—

Trevor: Right, right, right.

Kate: We know he had sensory integration problems later, and that might have been the beginning of it. He also had delayed speech, so he couldn’t communicate his feelings clearly. Even at three, he wasn’t speaking fully. It was hard to know what it was, but he would sometimes, even wake up. The minute he opened his eyes, he’d start screaming. So that obviously is abnormal. So, very soon after these episodes started to happen, we took him to his pediatrician, asked to see a neurologist. He also had some self-stimulating kind of behaviors that was also to me, very unusual. He would rapidly rotate his head, and he mostly did that when he was sitting. And I’m a physical therapist, so I knew that was not a normal response in the sitting position to just sitting quietly. He would just start doing this weird spinning of his head. The neurologist said that he felt it was self-stimulation. It’s just a sensory thing, and kids have unusual oddities here and there, but it didn’t mean anything in itself.

Trevor: Sure. I had a specific corner of a blanket, specific corner.

Kate: Yes.

Trevor: That I just liked to rub against my cheek.

Kate: Yes.

Trevor: I did this for a long time.

Kate: Yes.

Trevor: And when my mom was like, “We gotta get rid of this blanket,” I was like, “Fine. Get rid of the blanket, but just tear off that corner and give me the corner.”

Kate: So, you know, when a child’s only two or three years old, the pediatrician would see that in the spectrum of children’s development that having little oddities here and there in themselves wouldn’t be unusual, but the rage episodes were so disruptive that we couldn’t go places. If we brought him to a family member’s home, it was very disruptive to everybody. It was very off-putting to most people to have a child screaming. I remember a couple of times trying to go into a group, a play group, and having a woman tell me that he could be deaf, or he could have autism.

Trevor: Well, I was gonna ask if it was possibly auditory. Was he reacting to certain sounds, or pitches or—

Kate: It was frustration. He had very poor frustration tolerance. So, at that age, you’re teaching children. It’s not unusual for two-year-olds, or three-year-olds to have difficulty with frustration tolerance. It’s normal. But his was over the top, his was full throttle, as angry as he could be, sweating, screaming, his whole body going crumbling to the floor. I remember [chuckle] being... It’s not funny, but I had to laugh afterwards. I was taking Olivia to a psychiatry appointment. She was about—

Trevor: Olivia is your daughter.

Kate: My daughter, six or seven. And Owen wrapped himself around the telephone poll outside the psychiatrist’s office and I could not get him off. And as I was prying him off, he decided to yank on to my hair. So, he was like a baby monkey, his legs wrapped around the pole, his arms completely yet his hands yanking my hair. I couldn’t move. I couldn’t believe I’m outside the psychiatrist’s office with him having a full-throttle episode, and no one’s helping me. So, it felt like an hour of distress. It was really just 10 seconds, probably. But those are the kinds of things that if you were on the street, you’re gonna know, wow, that family is in trouble.

Trevor: Ralph, when a child comes to you, or you’re treating a child that displays these kinds of behavior, what are you assessing at that point, or are you even assessing anything? Are you just watching how things unfold?

Ralph: Program that I work at, we really see families, unfortunately, at a really painful moment. And so, there’s a whole range of preventative programs and school-based programs and outpatient programs, but on the inpatient program, we really see kids sort of in the moment, that Kate just described. They’ve reached the point where their systems are completely overwhelmed, and they’re triggered just too easily too often. That sort of extreme response. And so, whatever might be developmentally appropriate for a teenager or for an elementary school child. What the kids have in common that we work with and the families is that their child is at a really extreme moment of being triggered, completely overwhelmed, and most of the kids we work with have families that have drawn in family supports, incredible amount of energy, outpatient supports, but the whole system is at a moment where they’re really painfully overwhelmed, and so sometimes that comes out directed outward in rage, and sometimes it gets turned inward, and we see kids who’ve made attempts to harm themselves or a suicide attempt, particularly in older teenagers that we work with.

Kate: And that’s what we saw in our family. Our daughter, her response to her distress was to go inward, become severely depressed, become suicidal.

Trevor: When you say inward, was she quiet? Did she... Did she isolate?

Kate: She isolated, she was withdrawn, she stopped wanting to do things, she would be very overwhelmed by normal things that would happen in the school day, or she would completely collapse at school when she was overwhelmed, getting ready for a test, or an exam, she just...

Trevor: What age? How old was she around this time?

Kate: Her distress really kicked in around 10 or 11, whereas Owen acted out much earlier. But in response to what Ralph was saying, I think what it is, is the kids show signs early on that everyday life is more than they can tolerate, the rigors of everyday life, even as a child, the rigors of school, the rigors of social norm, the rigors of community behaviors, being in groups, et cetera are overwhelming to the children that have organic brain issues. And the system is so diluted, the way it’s set up, that you’ll go to get help for some of these distress behaviors. You’ll go to the pediatrician, or you’ll go to a psychiatrist, or you’ll go to a therapist, or you’ll go to a social worker, and all of them try to help you, but there isn’t always communication between all of those people.

And I think the biggest problem is in schools, the kids are displaying behaviors that show you they are not tolerating life well. They’re upset, they’re distressed, they’re unhappy, they’re depressed, they’re acting out, and it’s not taken seriously enough. I think the first response in school is, “We’ll send you to the school psychologist.” But a lot of school psychologists are not actual psychologists, they’re specialized people within the school program. And our experience was, they had no idea what to do with either of our kids.

Trevor: Yeah, the same thing happened to me, and they had no idea what to do.

Kate: So, you get shuffled from grade to grade in increasing amounts of inability and distress, and then there’s the stigma of acting differently than everyone else, so the kids get more isolated socially. And in our community, we were so isolated because the neighbors don’t wanna have anything to do with a child that’s showing rage episodes or a child that’s crying her eyes out over the smallest thing. So it’s a huge issue for society too, because these are the kids that later on become people that are still distressed in adulthood and are still needing a lot of help, and I see things that happen in the news, and they’ll say, “Oh so and so has had mental health problems.” And I know what that means. That means that person was probably very isolated, shuffled along at school, isolated from friends, isolated from families.

Because no one wants to deal. People talk a lot about getting more help in the mental health arena, but no one in real life wants to deal with someone that’s not acting like people believe that person should be acting. So, our own tolerance for people that are different needs to be better, and I think that the assessment that should go on in school should be much quicker and much more consolidated.

There should be better education for teachers and staff regarding picking up on a child that’s distressed, because when kids with mental health disorders act out, isolate, have difficulty with others, refuse to do their work, it’s not because they don’t want to. They would love to be able to do things like other kids, but for whatever is going on in their head, in their mind, they’re not able to. So, they’re not tolerating frustration, or they’re not tolerating the minimum demands that are placed upon and in class, and they cannot do it.

So, you know the author Ross Greene. He was hugely helpful to us because he talks a lot about if the child could do something, they would; if they could get their behavior together, they would; if they could do the schoolwork, they would. No child wants to fail. But what we see as society when we look at a child is there’s something wrong with you if you can’t act like we want you to act.

Trevor: Right. I have a question for the both of you, and it’s a little out in left field, so follow me if you can. Do you think modern civilization might be an issue here? Do you think some kids, it’s... Not everybody is meant for the complexities of modern civilization where he’s... Hundred and 150 years ago, granted, it was probably a harder life, but it was simple. You had to cut the wood and get the dinner and survive. There was more at stake, but it was simpler. I went to high school in 1990. I would remember being told the behavior and how you do right now is going to affect how colleges look at you, it’s gonna affect the job you’re gonna get, it’s gonna affect how much money you make, and therefore your investments, and I’m 14.

Kate: Right. And that’s true.

Trevor: I don’t think a lot of the times I was raised to be an adult. I think I was raised to be a contributor to modern social norms, and I don’t know, a system where I have to be a contributor too. And most people can adapt to that. You have to adapt to that, but some people can’t, and I don’t understand why we expect everybody to be on the same page here.

Ralph: I think things have sped up, and I think expectations have sped up. The amount of information that’s available to kids, the amount of expectations, the amount of activities, and I think that does leave a good number of kids vulnerable, and there’s certainly opportunities that come with it. You have a chance to learn from people you would have never met before. You can listen to podcasts, you can hear about other cultures, but also, I think, in really vulnerable moments with kids and teenagers, where some of what’s needed is actually helping slow things down a bit, and part of the learning process is to learn to slow down the response to some of those emotions and come up with some options and not get flooded. And that’s a particular vulnerability, I think, in an environment where you can potentially get information and sensory exposure at a huge pace, that I think was harder. You just couldn’t get that much stimulation that quickly, I think, years ago.

Kate: In the media and the expectations on social media. Kids now are supposed to be attractive and well-dressed and cool and able to rap, able to dance well, and able to have lots of friends on social media. There’s so much exposure. You’re not just exposed. But we just had to deal with our classroom, the kids in school.

Trevor: Which was bad enough.

Kate: Was bad enough. But now kids have to—

Trevor: No. Now you can be bullied literally 24 hours a day.

Kate: You could be. And that’s overwhelming. The other thing that I think is that now after going through 10 years of taking care of two sick children and getting lots of different people to give us input, we learned a lot, and we learned that I learned some huge lessons that I use all the time in my day-to-day life. And it sounds terrible, but I will say that I smoke pot in my mind, because I don’t smoke pot, but I really wanna achieve a feeling of let go, let go of previously held beliefs of what life should look like, let go of what I’m expecting from my children with all their issues, let go of what family expectations are, let go of how we present ourselves as a family. So, for me to tolerate the life we have, I’ve really needed to let go of all that, what you’re talking about, the stress and pressure of the world. And so, what it does is it puts the family in a very small world, and that’s how we survive. That’s how I survive mentally. I do not sign up for millions of things to do socially. I do not sign up for millions of appointments. I do the minimum that I have to take the best care of my family that I can and meet the expectations of life with my extended family and my friends and financially. Fortunately, my husband and I, we’re working well together as a team because we knew if we didn’t stay together, none of us would survive.

Trevor: That was the glue to the relationship?

Kate: I’d say that was the glue. We went through so much hell. My children were flogged in the system for years. Despite having two educated parents that were constantly trying to advocate for them, they were very, very distressed. Both had suicidal periods in their lives, both were not making friends, both were not successful in school. We were very isolated as a family. We weren’t able to participate in family events, even the basics like Christmas and Thanksgiving were very stressful events for us until we landed, by the grace of God, at Franciscan Children’s Hospital when my daughter was approximately 14, I’d say, and she went on to have many admissions there. But it wasn’t until we got to Franciscan that I felt like I could take a deep breath and be understood that the children’s behaviors were understood and accepted.

The first piece in evaluating them is accepting behaviors and the problems you’re seeing so that they can be thoroughly evaluated. I felt like the quality and the expertise of staff was superior to any place else we had been. And you know, I think that we’ve probably worked with at least 30 different professional agencies and hospitals, and we’ve been through nine schools, so we have had contact with the Mass Department of Mental Health, the town education system, the state’s education system, we’ve had to go to the State Board of Appeals because of my daughter not receiving proper education. We’ve dealt with many private and publicly funded assistance programs, social services, in-home therapy, crisis therapy, emergency rooms. So, we’ve had contact with all different kinds of mental health services, but Franciscan Children’s Hospital was the mecca for us. I said it was like being in a dream because the staff was so wonderful.

Trevor: Right. Ralph, can you give us, for the listeners, a background of the Franciscan—

Ralph: Sure. McLean and Franciscan have worked together to provide mental health services for children and teens, and the programs that are there at Franciscan Children’s really are working with kids and families in a really severe moment in crisis. And so, most of the families are coming to Franciscan Children’s McLean program from an emergency room in some pretty immediate crisis. And the program works with kids aged three to 19, so kids of all ages. There’s no emergency room there. And so we’re working with kids from emergency rooms across the state.

Trevor: So they are referred to Franciscan.

Ralph: They’re coming from communities all over. And there are a group of, just on the inpatient unit alone, I believe, about 100 professionals, all different backgrounds, mental health counselors, psychiatric nurses, psychiatrists, social workers, psychologists. And you asked what we do for assessment, but really what we do is what Kate was referring to, which is we bring together, in one place, a hundred people to share the load and work together, and we bring together what’s spread out and sometimes fragmented in the community under one roof at one particularly difficult moment, both to help children and family through that period.

And there are different types of therapies and different types of psychiatric assessment, but it’s really that teamwork, and it’s also the connection to the community, and so a big part of what we... The programs at Franciscan are really very temporary in people’s lives. It’s a relatively short moment, for most families a couple of weeks, for some families maybe a couple of months, but really what we’re doing then is working together with pediatricians, outpatient psychiatrists, schools, to help build the support system that we’re interacting with a number of the programs. There are programs here at McLean, the DBT programs, the Arlington school, but truly programs across the state that we’re working together with.

Kate: And the other significant piece at Franciscan was the understanding of the family interaction, why the whole family needs to be treated because the whole family is the medium for the child’s development, and if you’re not addressing the stress and trauma the parents are going through or the stress and trauma the other child is going through, then you’re not helping the whole family.

Trevor: I imagine at the moment when family and their children are arriving that sometimes there are some cases where it’s the parents that need the relief first, where they’re at their wits end, no fault to the child, but I don’t know what to do, I’m about to snap any second ‘cause I don’t know what to do. And I imagine that having a service, like you say, a Franciscan that helps everybody, not just treating the patient but treating the entire unit. That sounds like the smartest, most effective way to go. My guess.

Kate: The despondency that you feel when you have a sick child that you can’t help is torture. And anyone that has had a sick child in any capacity knows how badly they feel. And if you imagine your child... anyone imagines their child on their child’s worst day, in their worst moment, whether that was due to an acute illness, an injury, something horrible happening at school, and your child is sobbing, and just so distressed and imagine that you can’t help them with that. And most of the time when that happens with a kid, it’s fortunately, very temporary. But with our kids, it wasn’t. It was prolonged. It just, it went on for at least 10 years in different degrees of distress. So, finding Franciscan Children’s Hospital was a miracle for us. The hardest thing though is, and this is probably the most important thing I have to say today, there aren’t enough Franciscan Children’s hospitals.

Trevor: Oh, I’m sure of that.

Kate: In fact, even to get a bed there is almost impossible. It’s just luck and timing, it seems, to be able to get a bed. And the other children are getting... put into other places that are good. There’re some other good facilities. But, for us, with two very complex kids, this was a very different admission. This was a very different place. Again, ‘cause they treat the family, they recognize trauma, and that’s a huge piece. When you have a sick child or a child with mental health issues, there’s always an element of trauma, because a child with trauma isn’t really understood, and so there’s trauma for the child being with adults that don’t understand them. There’s trauma for the child that doesn’t fit in at school and is always ostracized or treated differently. There’s trauma for the child that doesn’t have friends, and there’s trauma for a child that isn’t accepted in their community. In our neighborhood, Owen was isolated, made fun of, and beaten up. At one point, an older boy beat him up, because he was difficult, and he was...

He was irritable. And so, we felt like prisoners in our own home. And that affects the child obviously. So Franciscan recognized that. The other place that helped us tremendously, and I wanna give them lots of credit, is St. Ann’s Home and School in Methuen. And they really specialize in taking care of children that have very hard situations, whether due to mental health disorders or psych and social problems in their families. They treat the toughest of the toughest cases. But there were similarities to how we were treated at Franciscan Children’s Hospital and St. Ann’s in Methuen. And that was, number one, they treat and address the whole family. And, number two, they follow the trauma-informed care. And that means that it’s a team approach. Everyone on the team is trained with the same goal and the same achievements in mind for all the children. So, there’s consistency in care, and there’s always someone addressing supports for the child. So, I highly believe in that.

And then the other thing that was significant was what’s called the ARC principal, A-R-C. A, attachment, R is resiliency, and C is competency. So, everything to do with taking care of our kids, and anyone’s kids, should be about enhancing the ARC principle. Helping the child make attachments. And they have dysfunction in that area, so they need a lot of help with that, helping the child become more resilient, and not getting frustrated and falling apart so easily. And so these are basic skills that most kids get when they’re very young, but when there’s mental health problems, those things don’t always develop, because the child’s so immediately overwhelmed with whatever they’re sensing, or whatever their brain is doing that’s not typical.

And then, finally, competency is critical, because if a child feels good about something they do, it’s the building block for everything else. So, with our own education within the mental health system, we learned some simple things that became our mantras. One was to just let go of previous conceptions of what life should be like. Two would be try to enhance trauma-informed care wherever your child is. Insist upon trauma-informed care. It makes a huge difference in the quality and the child’s reaction to the care. And, three, have your goal be the ARC principle, which is the basics for all human happiness. Having attachment, having resiliency, and having some competency. So out of all the chaos came some practical, sensible, achievable goals. And if you take life just one day at a time, you can achieve elements within those principles.

Trevor: So, with all this pressure, and workload, I assume you also hold a job as well.

Kate: I have a job, yes.

Trevor: Yeah. And all of this. How does one make the decision? And then therefore find the time and the energy to become a public advocate?

Kate: Well—

Trevor: And then, also, how did you two connect and become the dynamic duo that you’ve now become in the press?

Kate: Well, you know, I’ve already told you a few times that I was so deeply grateful to Franciscan Children’s Hospital that I would have done anything to raise the flag for them, to be a champion for them. They changed my life, they helped change my children’s lives, and my kids started to get better care, and they started finally to get what they needed because Franciscan validated all the things that we were seeing and was able to put together an assessment that... not recommended, but said it was adamantly important that the kids got these elements of care that they weren’t getting prior.

So, when your child gets what he needs, they get better. And different kids need different things. And that doesn’t mean it’s easy after that. It’s not. It takes a long, long time. But to be recognized for what you need, and to have that validated is a key piece in getting proper mental health care. And that doesn’t exist everywhere. We’re lucky in Massachusetts that we have many resources for mental health care. In other parts of the country, there’s nothing, or there’s minimal, and people have to travel or refinance their homes to get proper care. So, it needs to be... The kind of care I’m talking about today needs to be the foundation for everybody everywhere. So that you can go from state to state and the expectations in mental health care are the same whatever state you’re in. And there should be federal legislation that supports those pieces of care, making sure that children get seen and appropriately cared for in the emergency room, which doesn’t happen now.

Kate: If your child comes in in a mental health crisis, they’re shuffled from place to place, and you may sit in an emergency room for 24 hours to two weeks before your child finds an appropriate mental health care bed. There needs to be less silo care. Silo care is how... Insurance companies are in one silo, the legislation is in another silo, psychiatric care is in another silo, the education system is another silo, social services is another silo, and they’re not necessarily always working together, and that is required to give excellent mental health care.

So, I’ve dealt with all those aspects of care, and I’d say the biggest problem is that it ends up being the parent that has to communicate between silos. And when you’re in crisis, you don’t have the ability to communicate between all those administrative and medical silos. You are taking care of your child and your family. So, again, Franciscan is able to take some of that pressure away and help make those communication silos open up between the silos. I’m using the word silos too much I know, but I’m trying to think of a way to describe. It’s towers of care that aren’t necessarily working together. And I think if we worked with the governor, and the Department of Mental Health, and the insurance companies, and pediatric association, and obviously, the psychiatric associations, there is a standard of excellent care. There is. We’ve lived it, we’ve lived parts of this. It could happen, it could happen. So that’s why I advocate. That was a long, long drawn-out answer to your question. I feel like it’s my right and my duty to advocate for kids that don’t have proper care, and to validate what my kids went through. They went through hell, and that’s not right. And that’s why I advocate for other kids.

Trevor: Ralph, I have a question. This question was asked of me to ask of you. I actually find this question rather dated, but I still wanna ask it, ‘cause I kind of think that’s the point. What are some of the tips getting... What are some tips you can give for parents getting ready to send their kids with mental health challenges back to school? I say this is dated because, again, in the advent of social networking, I don’t think school ends in the summer anymore. The same pressures of school now continue through the summer. Summers were great for me ‘cause I got away from the bullies. Now, it doesn’t matter. They’re there mocking you on social media, whether you have an account or not.

Ralph: It’s true. Things have sped up, and kids who are vulnerable are vulnerable in the summer too and exposed to a lot, but actually some of it is still true in that school can be very stressful for kids, especially kids who are vulnerable. Lots of different types of stress, whether it be social or whether it be learning. And there’s a national study that just came out maybe a year ago that found the pattern still exists, that emergency rooms with psychiatric referrals really increased during the school year.

Trevor: Oh, okay, so it’s still an issue.

Ralph: So it’s actually—

Kate: Huge issue.

Ralph: Yeah, visits for teenagers has... for suicide attempts, has doubled in the past seven years, and it’s still concentrated during the school year. So, it’s actually... Maybe we wish it wasn’t the case, but school is still very stressful. It’s a huge transition into school for kids and families. And the national survey that goes out to high schoolers about mental health still gives us the feedback from the kids who answer it, that many of the kids who recognize, identify symptoms of severe depression, or mental health problems, still aren’t receiving care. So, I think parents listening closely… I think an important message is that there is help actually, that when you notice that your child’s struggling, reach out to the pediatrician, reach out to someone at the school, and not just for reassurance, but actually ask about follow-up, ask what kind of supports can be available throughout the school year. There’s some really exciting initiatives. I think it comes a lot from parent advocates in the state to really try to increase the access. I think people recognize that the schools are overwhelmed, the emergency rooms are overwhelmed in there. There really needs to be a change in having care more accessible more quickly for mental health care, but it does take some advocacy I think for parents. And so, part of it is, listen, respond.

Kate: There were three things that were popping up as you were speaking. One, you have to find other families and parents that have similar circumstances. Because, to know you’re not alone is so important, and being able to have resiliency yourself, and to go on to the future. I recommend strongly that people join the National Alliance on Mental Illness. It’s sometimes called NAMI. Through NAMI you can find all kinds of groups and support systems and help and recommendations for how to work with your school system, or how to find advocacy for your child. So, that’s a must. Also, there’s another organization called Parent and Professional Advocacy League, PPAL. They’re out there to provide help, and there are other groups too, but NAMI is a good place to start, and I can’t say it enough, finding... I found four friends through NAMI. We’re all still close. We’ve been together now since 2011. That was a lifesaver for me, finding other parents that were living the same thing we were, and they get it. And being with people that get it is a lifesaver. And for your kids being with people that get it is a lifesaver, so that’s a must.

Trevor: Is there anything from the both of you that you’d like to add before we wrap up?

Kate: I wanted to talk about advocacy, I wanted to talk about the ARC model. I wanted to talk about trauma, I wanted to talk about the silos of care, or non-care. I wanted to talk about...

Trevor: Okay, how about this?

Kate: I think I covered most of my biggies.

Trevor: Both of you, specifically, Kate. If there’s one thing you could change, one thing you could change right now, snap of a finger, what would it be?

Kate: Would be to open your heart.

Trevor: Yeah? So, for people to open their hearts more to this discussion, to the idea of children suffering from mental health issues?

Kate: To all of it, because we’re so caught up in what we think life should be like, that we’re not enjoying and embracing the basics that are more important, and I think there would be less mental health distress if people would just open up and not be afraid to take care of each other. How well you take care of the people in your own life should be the judge of what kind of person you are. Not how much money you have in the bank, and not how you dress, and not what kind of friends you have. It should be about what kind of heart do you have? ‘Cause when we’re leaving this earth and going to whatever is next, if there is anything, what do you wanna know? Do you wanna know you had the best car, or you wanna know that you were good to the people in your own life?

Trevor: Well, I think it’s unfortunate, but there are people who were raised with a completely different mindset that it is important that they die with the best car.

Kate: Yeah, that’s just sad to me, but it’s all related. This all goes back to mental health cares about who we are as people, and how well you take care of your elders, and your pets, and your children, is the judge of society.

Trevor: Okay, Ralph, one thing that you could change right now, and I promise that Scott Rauch won’t be listening to this.

Ralph: I just think for people to realize you are not alone, whether it’s professional help, or just plain the idea that—

Trevor: I’m gonna cut you off here. As somebody who suffers from suicidal ideation, as somebody who didn’t... I was a patient at McLean. That feeling of not knowing where to go, that feeling of being alone, that’s so overwhelming that it can easily, easily tip you into a fatal decision. And it’s quick. It’s quick.

Ralph: It is.

Trevor: So, what can we do to stop people who have isolated? It’s not that they’re not listening. They’ve cut themselves off so far that there’s no way for the message to get to them.

Ralph: Yeah. Yeah. And I think that’s why this message is really important. That message has to come from each other, from professionals, but then also there are people who have lived the experience who have incredible examples of resilience, of having worked so hard through therapy and relationships. I think the more we spread that message, I think the more it helps prevent those moments.

Trevor: I personally think that this crap of, let people work out their own problems... And this is something that has not just plagued society, but specifically plagued this area, New England, the cold stone. Don’t get involved in other people’s things, because of the responsibilities that may now become yours.

Kate: But if everyone reached out, there would be a lot less stress about the responsibility.

Trevor: Right. But they don’t wanna be responsible for your stress.

Kate: Right. But you can reach out in a moment and not have to take on...

Trevor: Absolutely.

Kate: That was what I was gonna say. Just you put your hand out. You just say, “I’m here.“ Or you verbally say, “I’m here.“

Trevor: Or, “What do you need right now?“

Kate: And if that person’s really on the edge of suicide, what could save them is your voice.

Trevor: Right. Dialing the number. I’ve got the phone.

Kate: Your voice. “I’m here, I’m listening, I’m right here.”

Trevor: Sure.

Kate: “I’m paying attention to you. What do you need? What do you want?“

Trevor: Absolutely.

Kate: And that’s all it takes. Not always. I’m not saying you can prevent every suicide, but I do believe that isolation is the gate that closes the door.

Trevor: Hey, in my darkest moments, and this was completely wrong thinking, but in my darkest moments, I didn’t think a single person cared about me.

Kate: Right. Of course.

Trevor: So, for somebody to reach out, and just say, “I care,” can be enough to pull you back from the brink and make you wanna go another day.

Kate: Or you feel so bad that you’re not feeling like you’re adding anything to anyone else’s life.

Trevor: That’s my common feeling. Is I don’t—

Kate: And I think that is what pushes people over the edge.

Trevor: Absolutely.

Kate: So, if someone reaches out and says, “I care, I hear you, I see you, I’m listening,” then that can change that whole sequence.

Trevor: Everyone, thank you so much. Kate, Ralph.

Kate: Thank you.

Trevor: This was really great. I really appreciate you guys coming on.

Kate: Nice to meet you.

Trevor: Nice to me you too, thank you.

Kate: Ralph, good to see you. I love you, Ralph.

Ralph: Oh, I love to listen to you.

Kate: I love to listen to you.

Ralph: I learn every time.

Trevor: Well, what did you think of that? I really like interviewing people with different approaches. One’s the peanut butter, one’s the jelly, and it goes really well together. This whole podcast thing has helped me focus on the craft. And notice I didn’t say art, but the craft of interviewing. And I’m listening to other interviewers now. I’m taking mental notes, and sometimes you can hear the joy in an interviewer’s voice when there is a very interesting dynamic going on between them and their subject, or if there’s multiple subjects, and having varying personalities, or varying approaches to conversation, it balances everybody out. I think that’s a lot of fun and gives some variety spice. [chuckle] Where that came from, I don’t know. Variety spice? Yeah, that’s why I get paid the big bucks, variety spice. I think it just brings something special to the show. Two weeks, two weeks, two weeks. Two weeks? Two weeks. I’ll be back in two weeks. Going on vacation. Like I said, staycation. I’m gonna go to a bunch of concerts, gonna watch some movies, gonna hug my cat, and sleep a lot. A lot, a lot, a lot. A lot.

I’ll see you all in two weeks. Thank you for listening to Mindful Things, the official podcast of McLean hospital. Please subscribe to us and rate us on iTunes or wherever you listen to podcasts. If you have any suggestions for special topics or feature guests, email us at mindfulthings@mclean.org. And, don’t forget, mental health is everyone’s responsibility. If you or a loved one are in crisis, the Samaritans are available 24 hours a day at 877.870.4673. Again, that’s 877.870.4673.

- - -

The McLean Hospital podcast Mindful Things is intended to provide general information and to help listeners learn about mental health, educational opportunities and research initiatives. This podcast is not an attempt to practice medicine or to provide specific medical advice.

© 2019 McLean Hospital. All Rights Reserved.