Holding On and Letting Go: Experiences of Parents of Adult Children with Early Psychosis


Anne Williams-Wengerd, PhD, Licensed Psychologist – Presentation Slides
Samantha Mulvey, Greater Nashua Mental Health
Pam Brazeau, Parent


Michelle Wagner, NAMI NH (she/her): Good afternoon. We’re gonna just take a minute here and let folks enter the zoom room. 

Michelle Wagner, NAMI NH (she/her): So, I am Michelle Wagner with NAMI New Hampshire, and I work on the first episode Psychosis, Early Serious Mental Illness Initiative. Thank you for joining us for today’s Webinar Holding on and Letting Go Experiences of Parents, of Adult Children with Early Psychosis. 

Michelle Wagner, NAMI NH (she/her): Today’s presentation is being recorded, and you’ll be able to find it on the education page of Onwardnh.Org. 

Michelle Wagner, NAMI NH (she/her): There’s also a short evaluation we’re asking folks to complete. After today’s presentation you’ll receive a follow up email with links to both the survey and the recording uh, and that will be in the chat before you leave as well. 

Michelle Wagner, NAMI NH (she/her): This is a zoom webinar which means your camera and microphone are off. The Q. A. Feature is working, so please enter any questions you have there, my colleague, Heidi Canton, and I will work to get your questions answered as best we can. With us today are four people who can help us discuss the experiences of parents whose lives have been impacted by serious mental health challenges, primarily psychosis. 

Michelle Wagner, NAMI NH (she/her): So, with this is Dr. Williams. I’ll give you her bio in a second. Here we also have Carla la Rochelle from Sicuros Mental Health Center. 

Michelle Wagner, NAMI NH (she/her): We have Samantha Malvey from greater national and mental health, and we have Pam Brazo, who is a parent who’s worked in a volunteer role with many other parents, and also has her own personal experience. 

Michelle Wagner, NAMI NH (she/her): So, we welcome you all. Thank you for joining us, and we’re going to start this Webinar with you in your research. But first I wanted to share with folks a little bit about you in your background, and Williams has worked in community mental health for thirteen years, and top psychology at St. Kathryn’s University for eight years 

Michelle Wagner, NAMI NH (she/her): most recently, and completed her PhD. And Family Social Science at the University of Minnesota, Yayan and research focuses primarily on the treatment of serious mental illness, both from the perspective of providers and families. Her dissertation was on grief and parents of adult children with early psychosis. 

Michelle Wagner, NAMI NH (she/her): She’s currently working at the navigate program in St. Louis Park, Minnesota. So that’s an early psychosis intervention program. We’ll talk a little bit about that with this group, and she’s working as an individual resiliency trainer. So, And now I’m going to turn it over to you. 

Dr. Anne Williams-Wengerd: Great Hello, everyone. I’m going to share my screen here. 

See that in our workings here. 

Dr. Anne Williams-Wengerd: I’m just delighted to be here. Thank you again, Michelle. So much for inviting me here.  Just wanna point out, because I’m a stickler for details that I’m a master’s level psychologist. And my PhD. Is in Family Social Science. So, I just the Board of um. Minnesota Board of Psychology is really a stickler about that. So, I’m just one of you. 

Dr. Anne Williams-Wengerd: It’s clear about that, And yeah, thank you so much for inviting me. First, I just want to say that there’s a few reasons why I did this research, and why I got into this, and the first one is that this is close to home for me. 

Dr. Anne Williams-Wengerd: So, I have a family member who has a serious mental illness. Diagnosis is always a little murky, but it’s probably bipolar one, and it’s been a very difficult path for for everyone in our family especially. I’ve watched my mom try to navigate her role as a as a mother of an adult with 

Dr. Anne Williams-Wengerd: someone who has a very fluctuating capacity with their mental health. And so that definitely influenced my work. I also worked in the community, as Michelle mentioned, for about thirteen years, and in working with people that had serious mental illness. And then I did crisis work, and I would often end up getting calls from families right who are concerned about. Oftentimes I was parents calling about their children. Um! That first episode of psychosis. 

Dr. Anne Williams-Wengerd: I really saw that in my work in the crisis team, and I ended up working a lot with families, even though my role was to work with individuals right. But I oftentimes ended up working with, 

Dr. Anne Williams-Wengerd: so that definitely influenced my work. and then I went back to school about four years ago, and I learned about this theory of ambiguous loss, and something clicked for me when I heard about it, It, it just it clicked with my experience as a family member, and then it clicked in regard to my work in the community 

Dr. Anne Williams-Wengerd: of thinking about the grief 

Dr. Anne Williams-Wengerd: that I saw in families. Um, that were trying to navigate. How do I respond to this loved one who I knew, and one way at for one point, and now is experiencing something that has completely changed. Who they are, oftentimes not always, but often 

Dr. Anne Williams-Wengerd: So, the theory of ambiguous loss. You may or may not be familiar with that, but it come, it’s uh it comes from Dr. Pauline boss. There’s a picture of her, and she’s a professor Emerit at the University of Minnesota, and it’s a theory that is meant to address a loss when there’s a mix of absence and presence. Right? So, there’s so it could be applied to a lot of different situations in the situation we’re talking about. 

Dr. Anne Williams-Wengerd: What we often have is, we have a a person in our life, a family member who’s physically present usually right, that we know them. They’re still alive, but they’re 

Dr. Anne Williams-Wengerd: absence is not there, I mean, their psychological presence is not the same. So, in a way, they’re almost emotionally or psychologically absent or changed. And so, there’s this kind of mix. It’s like well, we haven’t really lost them, but yet they’re not the same that they were before, and so that is how it um made sense to me. 

Dr. Anne Williams-Wengerd: The loss in in ambiguous loss is often meant to be characterized, or it’s often characterized by uncertainty. So just not knowing what is lost, what isn’t lost um! And then oftentimes in in the Us. There’s no clear end, it’s not like, and now we’ve treated it, and now it’s over, or now they’re going to come back, and it’s over. But there’s this 

Dr. Anne Williams-Wengerd: this not we don’t really know when or if it’s going to end, 

Dr. Anne Williams-Wengerd: and we definitely see that in in early psychosis and serious mental illness, 

Dr. Anne Williams-Wengerd: another important concept that I would just want to point out is this idea of boundary ambiguity, and this was one of the concepts that Dr. Boss first talked about when she addressed. We provided her theory of ambiguous loss, and she said, that when people are experiencing this ambiguous loss, oftentimes 

Dr. Anne Williams-Wengerd: family members are trying to understand. Are they in the family? Are they out of the family? Do they have the same role that they had before, or do they not? And so they’re trying to straddle and figure out what their role is with this family member that’s 

Dr. Anne Williams-Wengerd: a mix of absence and presence. And then also what the family members role is in the family, and it’s confusing. 

Dr. Anne Williams-Wengerd: and, there’s not a lot of answers, and so boundary ambiguity is a concept that’s been used in other um experiences like family members with dementia, for example, and so, there’s a measure for it. and so, I use that in my dissertation I just wanted to point that out. 

Dr. Anne Williams-Wengerd: So why, you know ambiguous lost theory. Well, you know, psychosis. It typically occurs in this launching stage of early adulthood laid out a lesson right, and that period is already uncertain and stressful. 

Dr. Anne Williams-Wengerd: You had this person who was this little this kid, and they always needed your care. And now they’re starting to kind of like drive, and they’re starting to emerge as this adult. And then they have all these rights. And and yet you’re still feeling responsible, and you still maybe don’t see them in that way, right? So the launching stage is murky 

Dr. Anne Williams-Wengerd: and uncertain anyway. But psychosis brings about this unexpected change in their capacity, or in the loved one’s capacity to make decisions and to be independent; 

Dr. Anne Williams-Wengerd: and it requires the family to adapt in a way that they didn’t anticipate. So, while we could have anticipated adulthood. Most families don’t anticipate psychosis. They don’t anticipate that that’s going to happen, and they’re going to have to navigate something that is even more complex, 

Dr. Anne Williams-Wengerd: and I should point out, I think I missed something back. And just why ambiguous lost theory is that it’s a family theory 

Dr. Anne Williams-Wengerd: and so, it recognizes the relational experiences. And oftentimes, when we talk about psychosis or mental help, we think about it from the individual perspective, not a family perspective. One hundred and fifty. 

Dr. Anne Williams-Wengerd: Because that’s our medical care system, right? and I kind of talk about that quite a bit in my work. So Why, parents? Well, Parents are often the first people to notice psychosis, and and that’s important to recognize that role. Because parents have this unique role with their their children right there. They’ve seen them from early on. They’ve had this responsibility to provide caregiving responsibility 

Dr. Anne Williams-Wengerd: to to take care of them and to to see them grow and, and then may have anticipated ideas about where this child’s life is going to go.  and so, parents have a unique role, and I would argue that they have a unique experience in the psychosis. 

Dr. Anne Williams-Wengerd: It’s not the same as the siblings experience a sibling experience. It certainly is meaningful, and I’m a sibling. So, I understand that. But a parent’s role is different. Right? There’s that responsibility that isn’t quite there on a more level relationship. 

Dr. Anne Williams-Wengerd: Um. 

Dr. Anne Williams-Wengerd: So, we also know that parents relationships with their children are unique. So we know that, having family involved having parents involved helps to ensure and facilitate treatment, it reduces hospitalization. It reduces psychotic symptoms. And so, if we can have the family engage, that’s a really positive thing. And so we need to be thinking, Well, what is the family experiencing if we’re going to have them engaged? And how do we support them to have them in need 

Dr. Anne Williams-Wengerd: so again. So, a lot of the theories that have gone that have been in the past, and a lot of ways of supporting family or thinking about family, I should say, not supporting, but thinking about family have focused on the pathology of the family. So, if you’re familiar with Freud, or some the idea of a schizophrenic mother, for example, a lot of the blame for why a child might have a mental illness or a psychosis was put on the 

Dr. Anne Williams-Wengerd: oftentimes the mother, of course, and and so that there’s that focus on Well, what did the family do to cause this? And I don’t think we hear that quite as much. But there’s still that underlying assumption, and maybe not among providers. But you might find it among friends or family that hear about it. So, some of these people can be reluctant to share, because they might assume that oh, so and so think that I did something wrong, because my child is experiencing this. 

Dr. Anne Williams-Wengerd: And so there’s that focus on pathology, whereas ambiguous loss, the theory there is to focus on normalizing the experience of grief as a human experience, a human response to loving someone who’s struggling and in pain. One hundred and fifty 

Dr. Anne Williams-Wengerd: and so there’s a very different way of thinking about it from an ambiguous loss perspective. 

Dr. Anne Williams-Wengerd: So why grief? Well, research shows that grief is a common response. Not everyone experiences it. So if you’re a parent in this Webinar, and you’re thinking, hey? I don’t experience grief. That’s not my experience that’s great. I am not arguing that every parent experiences it. But I am saying that research shows that it’s not uncommon. In fact, it’s pretty common, and so that is why I studied it for for my dissertation. 

Dr. Anne Williams-Wengerd: So my question was in thinking about grief and parents. So if we know it exists, we know we need parents involved in treatment. We know parents are struggling well do we have something to learn from this ambiguous loss Theory one, 

Dr. Anne Williams-Wengerd: and at, it’s. As far as I know, there’s been no research exploring that. So that is why I conducted my research. So, I did two studies and one quantitative study, where I used surveys to explore specifically parents’ relationships with their children one hundred and fifty, 

Dr. Anne Williams-Wengerd: and their experiences of their grief. And then I also did a qualitative study which is interviewing people where I talk to parents about their experiences of their degree. 

Dr. Anne Williams-Wengerd: I’m going to summarize the first one pretty short, because I really want to dive into the qualitative research. But I’ll tell you what I found in my survey. So, I had about thirty parents that completed the survey. Most of them were mothers, as is maybe you won’t be surprised about that.  It was twenty-eight. Out of the thirty were mothers actually and the results of the survey showed that the stronger the parent 

Dr. Anne Williams-Wengerd: child relationship, 

Dr. Anne Williams-Wengerd: the more they were able to stay connected to their child, right that they could feel connected to them. The lower the grief that they experience. Now some people might have assumed the opposite Right? Well, if you are disconnected, you’re not gonna know you’re not going to have a lot of grief.  Well, and it’s actually, you know, the closer we can stay connected to them in their experience of psychosis, 

Dr. Anne Williams-Wengerd: and that can be really challenging because we can feel like, 

Dr. Anne Williams-Wengerd: Who is this person? I I don’t know this person any more right. And so you’re losing something. 

Dr. Anne Williams-Wengerd: I also found that parent’s grief was highly associated with their own uncertainty about the role they have with their child and their child’s role with their family. So, this idea of boundary ambiguity was really present in parents’ experiences of grief. 

Dr. Anne Williams-Wengerd: So I think that tells us something here that we need to be focusing on right as as providers and as supporters of people. 

Dr. Anne Williams-Wengerd: And just to point out the boundary. Ambiguity measures have not been previously used with this population, so I adapted it. It was a measure that had been used with families, with dementia, so I had to change a couple items. and so, we definitely have more to do with that. This is all very small sample preliminary research, but I think it gives us some clues of where we need to go. 

Dr. Anne Williams-Wengerd: So, I just wanna again. That’s the caution right to take the survey results. Very small sample, mostly mothers from all Midwest families, for the most part. And, you know. Just Yeah. So, we just wanna be cautious. 

Dr. Anne Williams-Wengerd: The in the second study. I explored grief experiences of parents, of adults with early psychosis through parent interviews. So specifically, I use something called hermeneutic phenomenology, which basically just means you’re exploring the experiences of someone by understanding there and by interpreting them. So, it hermeneutic is, is all about experience, or I’m. Sorry interpretation and phenomenology is all about. 

Dr. Anne Williams-Wengerd: And so just sitting down with parents and really trying to get into. What is this like 

Dr. Anne Williams-Wengerd: for you? Explain to me what this is like and asking them to give examples. This wasn’t easy for parents. It was not, you know, always easy for me, but definitely not for parents, and I felt the weight 

Dr. Anne Williams-Wengerd: of their experiences in these interviews. I I definitely followed up with some of them about resources where they lived, and I thought it was so brave. I am so grateful to the parents that were going to talk to me and share about this really painful experience, and sometimes, maybe not. Having talked to a lot of other people about their experiences, I I I’m just exceedingly grateful to the parents that participated in 

in this research. 

Dr. Anne Williams-Wengerd: So again, that’s hermeneutic phenomenology. I guess I I was going to take this slide out, but I didn’t, so again, the goal of that is to capture that essence of complex lived experiences. And certainly, this grief in having a child with adults. An adult child with early psychosis is complex, it’s not clear. 

Dr. Anne Williams-Wengerd: and again, I I interviewed participants with open-ended questions, and tried to really understand what they were experiencing. 

Dr. Anne Williams-Wengerd: So, I interviewed thirteen parents, twelve mothers, one father. This was all over. Zoom. It was a very homogeneous sample. All participants indicated that they had a spouse or a partner, and ten out of the thirteen had a college degree or higher. So, a very educated sample of of people that I interviewed. Um. I asked them questions such as describe what your life has been like for you since your child became Ill describe what your relationship has been like with your child 

Dr. Anne Williams-Wengerd: since they became ill, and I also asked them for advice. What advice would you give for other parents in a similar situation. 

Dr. Anne Williams-Wengerd: So here are my findings. I want to note a couple things. Experiences of grief were not described as discrete events or experiences. Right? They’re they’re complicated, and they’re messy, 

Dr. Anne Williams-Wengerd: and they’re giving me these stories. And then I have to try to kind of figure out a way of understanding all that data, but I want to say that it’s again like I’m going to give you my findings or my themes that I found, but know that 

Dr. Anne Williams-Wengerd: they’re complicated, and that people’s experiences were changing all the time, and they were, 

Dr. Anne Williams-Wengerd: you know, really interconnected. So, I’m going to give you these three themes that I found. But note that they just really overlap with each other. 

And it Yeah. 

Dr. Anne Williams-Wengerd: So, the three themes I found was parents uncertainty. 

Dr. Anne Williams-Wengerd: So just a lot of uncertainty, and I’ll talk about that a little bit. There is also a paradox of this holding on and letting go, and that’s why I named the the Webinar for what I what I did?  that parents had to hold this experience of. Okay, 

Dr. Anne Williams-Wengerd: where am I with my child? I I’m holding. I I want to support them, and then I but I can’t. I can’t do everything, or I can’t. I can’t control this part of their illness, or I can’t control their decision making, and then overwhelming emotions 

Dr. Anne Williams-Wengerd: which is not surprising at all when we’re talking about something like brief. 

Dr. Anne Williams-Wengerd: And I also found that these themes fell largely into three overlapping domains. There was the child, the adult child. There was the parent, and then there was the parent’s relationship with the adult child. 

Dr. Anne Williams-Wengerd: And and again, like these are interconnected. They’re gonna impact each other. But there was some sense of. I think there’s a value in trying to like, break them apart, because I think it might help us understand this experience just a little better. So that’s why one reason why we do these things? 

Dr. Anne Williams-Wengerd: and then I’m going to use pseudonyms for the participants. I’m going to go through each of these themes. First I’m going to show you kind of a breakdown of my findings in a chart. I think that’s helpful. Um! It looks something like this. So, I found that uncertainty in these three domains right? There was uncertainty about. 

Dr. Anne Williams-Wengerd: Where is my adult child? What happened? 

Dr. Anne Williams-Wengerd: And then there was uncertainty about Well, how do I relate to this child, what can I expect my child to do?  What’s normal to expect of them? And then for parents, It’s How do I, parent? Now? 

Dr. Anne Williams-Wengerd: How do I do this. How am I as a parent in this uncertainty? 

Dr. Anne Williams-Wengerd: There’s also those overwhelming emotions. So there’s overwhelming emotions about the child like their sadness about their illness. There’s guilt, Or maybe I did something wrong, and there’s anger. There can also be anger, not always, but sometimes 

Dr. Anne Williams-Wengerd: there also is a roaming emotions about the relationship with the child. Right? So sadness, fear, guilt about that relationship like What if I can’t ever connect with them in the same way I did before. And then there’s also the parent themselves. They have overwhelming emotions about who I am as a parent, 

Dr. Anne Williams-Wengerd: so, a lot of guilt like. I should have seen this sooner, I I should have done something different. 

Dr. Anne Williams-Wengerd: And then that paradox of holding on and letting go falls in those three domains as well.  So, there’s that change, child, with the changed feature. And yet still there, my child, right holding on and letting go. And then there’s that relationship. I want to be close to my child, but it’s not the same as it was before. 

Dr. Anne Williams-Wengerd: And then again, you know, as far as who I am as a parent. Um oops. Sorry I don’t know why that went um 

Dr. Anne Williams-Wengerd: there. Huh! I’m trying to uh move my screen so I can see something that I’m not the same person. Um! And as I am, as I thought, I was, as a parent either. Right? I’m I’m different. I’ve changed somehow, but I still want to be a loving parent. So how do I? How do I do that? Okay. 

Dr. Anne Williams-Wengerd: So, let’s talk about each of these scenes? 

Dr. Anne Williams-Wengerd: Individually. Yes, that’s the word I’m thinking of. 

Dr. Anne Williams-Wengerd: So the first theme is uncertainty. So we talked about that again. Uncertainty! Where is my child? What is happening? And so I have a quote here from a parent, 

Dr. Anne Williams-Wengerd: and this is Molly uh a mother of a son with early psychosis.  For four years. So, I only talked to parents that had had children experiencing psychosis for five years or less. That’s how I defined early psychosis. So, that doesn’t mean that after five years it’s over. 

Dr. Anne Williams-Wengerd: But for the sake of my research, I was looking for that early period, because  That’s that time when we really want to engage family right. So, if we really want to engage in family, we really need to understand that experience for family. 

Dr. Anne Williams-Wengerd: So, here’s a quote from Molly: It was his senior year when it went really bad, and he clearly was having a psychotic episode, and it was when we finally knew it. But we didn’t know what it was, 

Dr. Anne Williams-Wengerd: but we’re just like what the hell right? So, they’re like. We knew something was wrong, but we weren’t sure what it was, and we were just mystified. What do we do? There’s that uncertainty. 

Dr. Anne Williams-Wengerd: Jessica, a mother of a son experiencing psychosis for two years, they said. But I think ah! The grief comes in, because again, from the perspective that we were sort of on a trajectory that he was on prior to all this happening, 

Dr. Anne Williams-Wengerd: and we had no reason to think that he wasn’t going to go on some sort of traditional path, whatever that meant to him. So, I remember this. Mother in particular, was talking about how they didn’t have like they didn’t have these really clear, like they have to be a doctor. 

Dr. Anne Williams-Wengerd: They have to be a lawyer, but they kind of just thought “Well, they’re gonna be independent like that,” was what we assumed, and that wasn’t happening now. So, what’s happening? Right? So, what what is going to happen one hundred and fifty. 

Dr. Anne Williams-Wengerd: And then that uncertainty of of how to parent and I thought this mother just did a great job as a mother of a someone say Kos for five years, said, You know there’s times where I’ll explain things to my son, and he’ll say, Mom, I’m not a child, 

Dr. Anne Williams-Wengerd: and I understand that. But I’m like I never know if I’m explaining too much or too little. And so it’s just really weird to to be in, and this mother described how she had had to teach him. Read, you know, teach him again how to open a can of orange juice, 

Dr. Anne Williams-Wengerd: and that was like, Oh, okay. But then there’s other things he might do like how to make an appointment that he seemed to be able to do so she was really confused about what do I tell? What don’t? I tell what you know? Do I hover too much, too little, and that that’s that’s really uncertain. 

Dr. Anne Williams-Wengerd: So, this paradox of holding on and letting go of both their child and their relationship with their child. Now here is where that overlapping really came in 

Dr. Anne Williams-Wengerd: right. It was really difficult to disentangle that. And this is a quilt that I think is just really powerful. 

Dr. Anne Williams-Wengerd: A mother talked about. It’s rough because it’s just so different. 

Dr. Anne Williams-Wengerd: I feel like I had this one I had had. So, I have to relate to this new son. Sorry, 

Dr. Anne Williams-Wengerd: who’s different, and it’s hard because he’s prickly, and it can be difficult, and I’ve also got to keep. You know I know he’s sick, but there’s only so much I have to say. 

Dr. Anne Williams-Wengerd: I don’t want to let him treat me in a way that I’m not comfortable with, because sometimes, when he would get sick, he would get angry and mean to her, and that was totally different than his personality before he was sick. 

Dr. Anne Williams-Wengerd: So, I don’t have to let him treat me in a way that i’m not comfortable with, because he’s sick. 

Dr. Anne Williams-Wengerd: And so, it’s just it’s harder. We used to do a lot together before he was sick, and we used to had a lot of interest in things, and it’s harder to enjoy that time together. Our relationship has changed, and I missed it. So, you hear that paradox of holding on a letting go to the child right the child that she knew. 

Dr. Anne Williams-Wengerd: And then also that relationship with the child and this quote just really captured. How muddled that that can be! 

Dr. Anne Williams-Wengerd: Another Dorothea, mother of a daughter experiencing psychosis for three years, stated. 

Dr. Anne Williams-Wengerd: That’s the hardest part is knowing how to walk that tight rope Of how much do you help, and how much do you let a twenty six year old figure it out, 

Dr. Anne Williams-Wengerd: And I thought that was another really good quote of like that tight rope, you know. Kind of get that paradox? I thought that was a really good description, Francis said, So I do wonder a lot like what is my role here as a parent? Do I just sit back and let them deteriorate in front of my eyes, or what am I supposed to do so? My role, which I’ve told him and told him yesterday, because we kind of talked about this, but it didn’t go great. But I said, I’m going. I’m not given up on the medication. The drug you have to take your medication. There’s no negotiation about that. 

Dr. Anne Williams-Wengerd: I’m gonna bother you about it. So, for this, mother, she said. Nope, I’m gonna hold on to the medication. That’s a must. 

Dr. Anne Williams-Wengerd: But I’ll maybe let go of some other things, 

Dr. Anne Williams-Wengerd: and that was with all the parents. There wasn’t. There’s not a prescriptive way of telling families how to respond, and I think that is, was a really powerful finding 

Dr. Anne Williams-Wengerd: was that families navigated this very differently, and I, I don’t think any of them were like right or wrong. I think they were just all trying to figure it out with the written sources that they had. And so, for this parent this is where they put a line, 

Dr. Anne Williams-Wengerd: and I could never go about as a clinician telling a parent where that line is, and I think that is hard to hear 

Dr. Anne Williams-Wengerd: As a family member. It’s like No, no, I want to be told. 

Dr. Anne Williams-Wengerd: Tell me where, and I don’t think we can. So that’s another 

Dr. Anne Williams-Wengerd: there such overwhelming emotions. This is not, You know this is really common. If we think about grief, we think about emotions right, there is that sadness of Oh, I’m so sad and regret that my child doesn’t have the life that they thought they were gonna have, that I thought they were gonna have. And then there’s also this here 

Dr. Anne Williams-Wengerd: a fear of safety 

Dr. Anne Williams-Wengerd: that was not uncommon a fear of like. What if they leave the house without a coat on I’m in Minnesota? So that was one thing I heard, you know, in the winter, and there they they they actually become in danger because they’re not taking care of themselves. Or what if they get pulled up, or by a police officer, and they say something that you know, causes the police officer to react in a in a way that could be dangerous, fear real fear about safety, 

Dr. Anne Williams-Wengerd: and then guilt right about What could I have done differently? Could I have done better? Should I be getting better treatment for my child. Should I be more engaged in my treatment, Should I be trying harder to to get them to, to do something or get better housing for them, 

Dr. Anne Williams-Wengerd: and then anger, anger sometimes at their child. Can’t you get your? You know your stuff together here? Can’t you remember what I told you, and then anger at treatment. remember no treatment Providers like, can you do more? Where? Why can’t? Why can’t you provide more? Can you tell them what to do. So, you know, just anger and frustration, and then maybe even anger or frustration at their partner, 

Dr. Anne Williams-Wengerd: or other family members that don’t get it. so that anger isn’t uncommon, and it’s not inhuman, it’s human. It’s a human response. 

Dr. Anne Williams-Wengerd: So, you know. So, for the findings here you know. So, so this is always the question and researchers ask like, So what? So, you found this? So, so, so, so what? Well, what I found is the nature of grief in parents. 

Dr. Anne Williams-Wengerd: It just involves this tremendous uncertainty about their child’s illness, and what the future holds for both their child and the family, and that’s a lot of weight for families to carry 

Dr. Anne Williams-Wengerd: this uncertainty. It’s a lot to hold 

Dr. Anne Williams-Wengerd: um. We also know that the parents were really emotionally invested. The parents that I spoke with, and I think most parents are really, you know, highly, emotionally invested in the relationship with their child, and they really struggled with this they weren’t one way or the other. It wasn’t clear for most parents of like forget it, I’m done with my kid or I’m one hundred percent. I do everything for them. For the most part it was this trying to figure it out in, 

Dr. Anne Williams-Wengerd: manage and straddle this holding on and letting go. 

Dr. Anne Williams-Wengerd: I do think that concepts from ambiguous law, such as boundary ambiguity naming it that, and then a naming uncertainty. where they were evident in the parents’ descriptions, and I think those could be really useful if we could bring those to families in in in ways of supporting them. 

Dr. Anne Williams-Wengerd: So, you know my overall findings, and I just. I kind of printed out some ideas here. 

Dr. Anne Williams-Wengerd: You know that this is that paradoxical task, right? That we’re asking families to undertake where they’re simultaneously holding on and letting go of their child. And I do think that boundary ambiguity addressing that could in intervention. So, whether we do support groups, or we do family therapy. We were just kind of brainstorming before this. About what can we do to support family?  We that to include that, and to recognize that families are having to navigate that, 

Dr. Anne Williams-Wengerd: you know. I also think you know implications. That we have to recognize that parents they experiencing this with their child. They’re in transition, and they’re trying to figure this out and 

Dr. Anne Williams-Wengerd: framing these experiences as an ambiguous loss 

Dr. Anne Williams-Wengerd: and and trying to normalize their grief could be really useful to name it. And to say, it makes sense that you’re sad. It makes sense that you’re having a lot of complex feelings. 

Dr. Anne Williams-Wengerd: and to make it clear that this is a normal response. One of the things you know we know from research is that trying to keep the stress low in the family can be really useful, 

Dr. Anne Williams-Wengerd: and we need to have space for families to express these complex feelings and space somewhere in the therapeutic process to navigate this complexity. 

Dr. Anne Williams-Wengerd: and I don’t think as of now we do, you know, maybe there’s some spaces like the NAP NAMI family groups right where we may, but they’ll do that. But we don’t really have the space, and so that’s one of the hopes that that I would have. And I think that, 

Dr. Anne Williams-Wengerd: you know, giving language for family members to communicate and talk about their experiences is really really powerful and and naming their grief, and I’m probably repeating myself now. So, I’m going to be done now 

Dr. Anne Williams-Wengerd: to stop my sharing. 

Michelle Wagner, NAMI NH (she/her): Thank you. And that’s really important research. And as you shared there. Isn’t much out there. So, you’re You’re starting the the trend for researching parents. Um 

Michelle Wagner, NAMI NH (she/her): whoops. 

Michelle Wagner, NAMI NH (she/her): I’m sorry I went way over time. I, We’re good. We’re good. 

Michelle Wagner, NAMI NH (she/her): So I’m gonna turn to our panelists and hear their thoughts on the research that was shared, and the work that they’re doing. So, Carla, how about if I go to you first, Carla Rochelle? If you can just tell us what you do with seacoast, And then what are your thoughts about this. What are you seeing? It’s because of mental health with families. 

Carla LaRochelle, LMFT Seacoast Mental Health Center: Thank you, Michelle. So, I am Carolina Rochelle. I am a license merchant. I’m, with, Say this at Sequros Mental Health Center, and I do uh work with with the first episode psychosis team. I do provide also the family education for that program. 

Carla LaRochelle, LMFT Seacoast Mental Health Center: And so, as I was listening to. And yeah, a couple of things that really stood up for me. Which 

Carla LaRochelle, LMFT Seacoast Mental Health Center: the normalizing of grief.  because uh, then, that’s something that working with families over the years uh is It’s been really a focal point, because we tend to think of grief as something that we experience after the death of a loved one. We rarely put the title of grief to other things like the potential of the loss of a future for our child, 

Carla LaRochelle, LMFT Seacoast Mental Health Center: or the loss of their health, or the uncertainty that Ann was mentioning. What does that mean, I think, that the process of letting go in in holding on is such a natural process right as parents.  We see it from toddlerhood from birth all the way through adulthood? Right, you know. Where do we fit? How much do we protect? How much do we let go and and let them fall on their own and figure out like in, was saying. And I think that mental illness 

Carla LaRochelle, LMFT Seacoast Mental Health Center: of any size, but mostly, uh, something as radical as psychosis just puts parents on that uh over the edge, alert mode of wanting to protect their child, and many times that fear um sort of folks that control and and sometimes anger. And yeah, finding, where do I fit as a parent? So, I think that and uh pointed that out very um 

Carla LaRochelle, LMFT Seacoast Mental Health Center: specifically that I think that something that I personally like to say to parents is it’s going to take time. It’s not going to be something that you figure out the first week or the first month 

Carla LaRochelle, LMFT Seacoast Mental Health Center: is going to take time, and it’s going to shift over time, because depending on the age of the person. When they develop the psychosis they may be a teenager, and that’s going to have to develop. Also, they’re going to have to mature and work out teenagerhood, because 

Carla LaRochelle, LMFT Seacoast Mental Health Center: that happens regardless of psychosis, and then they will be a different person when they’re in their twenties, and when they’re in their thirties, And so over time. Uh they, the person will change, and so we’ll have to change the boundaries, the limits, interactions. So, time, time, time is not the thing that we ever want to hear. Um. 

Carla LaRochelle, LMFT Seacoast Mental Health Center: But uh, time is uh is an ally when it comes to the development of of the boundaries, relationships, understanding limits, but grief and expressing it, and being able to say, This is painful and hard and unexpected, 

Carla LaRochelle, LMFT Seacoast Mental Health Center: and and to feel the sadness for it, I think, as Anne was pointing out, having a space to that is absolutely paramount. 

Michelle Wagner, NAMI NH (she/her): And what we traditionally seen in a treatment of individuals with psychosis is that we’re focused on the individual, and why I don’t think about the families and the impact on the families. And it’s significant. Yeah, I think that one of the important components, also of any uh program that treats uh uh, this type of illness is that 

Carla LaRochelle, LMFT Seacoast Mental Health Center: um. 

Carla LaRochelle, LMFT Seacoast Mental Health Center: We may get to know the person as an individual in the moment with their when they become sick. But the family knows the person before they got sick, and uh, and they knew their potential, their wishes, their dreams if they, you know from birth Right? So that’s for us, as practitioners is a very 

Carla LaRochelle, LMFT Seacoast Mental Health Center: important source of information to to determine how to continue to support the family, and they love one through the following stages of of of their lives and in in the treatment of their illness. So, I think it’s so important to have a family simple, and for the families to to actually try to be involved. 

Michelle Wagner, NAMI NH (she/her): And we do know not all families can or should be involved. Right, that is, 

Michelle Wagner, NAMI NH (she/her): and um 

Michelle Wagner, NAMI NH (she/her): Oh, I just lost my train of thought. There was something really important to one of the other things I was thinking of is this happens at a time in young people’s lives when parents are saying, Oh, my goodness! I can catch my breath. They’re finally launching. And now parents are flung right back in to really intensive care without a rule book. Right? Nobody taught me how to do this. I can’t pick up Dr. Spock or go on Google and find out, you know, when to start feeding them, 

Michelle Wagner, NAMI NH (she/her): or when to, you know. Let them go out on a date. I mean, there’s this is uncharted territory for parents 

Michelle Wagner, NAMI NH (she/her): and and your research and research that’s out there and shows that if parents aren’t healthy, then the person with psychosis is going to be less healthy as well. And yet in the past we’ve done nothing to support parents 

Michelle Wagner, NAMI NH (she/her): in walking through this process, or have done a minimal amount to support parents. It’s been treatment for the individual, but not considering treatment for the parents and for the family as well. 

Michelle Wagner, NAMI NH (she/her): So, with that, Sam. I’m gonna move over to you. 

Samantha Mulvey Greater Nashua Mental Health: Thank you, Michelle, Carla. I think you did a wonderful job. I agree with a lot of it. I think one thing that really stuck out to me that I I really love, and I’m gonna move forward with with bringing up to parents on my end, too. Is that idea of being on that tightrope, that 

Samantha Mulvey Greater Nashua Mental Health: not knowing what to do, that you know you’re a parent. But now you’re not necessarily where you thought you would be in parenthood at that time, and kind of trying to to deal with that and top of dealing with 

Samantha Mulvey Greater Nashua Mental Health: the guilt that you’re feeling, but also the guilt of feeling that guilt. A lot of times. We have parents that feel guilty for feeling guilty, and It’s It’s so important to realize that you’re going through something as well. It’s not just the client um. 

Samantha Mulvey Greater Nashua Mental Health: And to to introduce myself, I apologize. I jumped right in, because this topic is really amazing. Um, I am the Fpp team lead. I do the family education, and I also do the individual resiliency training as well. Um, So I see one on one and family, which I’m fortunate. Um, because I think it provides a really great opportunity. 

Samantha Mulvey Greater Nashua Mental Health: And then another thing. I wanted to point out that I I love doing is is saying to parents. You know you’re the expert a lot of these times, you know. We’re getting from from the client’s point of view, and sometimes we’re not getting the full picture. You know It’s so important for us to collaborate, and parents are so important, and in such an important aspect to be a support, you know. Let us be support for them, but sometimes a lot of times they’re really great supports for us, and getting information and and really helping our knowledge. So 

Samantha Mulvey Greater Nashua Mental Health: I think this is a really wonderful topic, and I’m glad that we’re putting it out there so that parents can understand that it is a lot, and and we see you and and you deserve to to feel the feelings, and you are hurt. 

Michelle Wagner, NAMI NH (she/her): And, Sam. That’s a great segue into what we have for treatment around early psychosis now here in New Hampshire, because historically that was not the case. Parents weren’t always invited in. So, this is a real shift in the paradigm. Uh 

Michelle Wagner, NAMI NH (she/her): what what has happened is there was research around specific treatment for early psychosis Greater Nashville, where Sam works 

Michelle Wagner, NAMI NH (she/her): was the first in the State to pilot for us a program called It’s coordinated specialty. Care is the model that they use, 

Michelle Wagner, NAMI NH (she/her): and that’s a a team approach to taking care of individuals. With all these different components and different members of the team who meet with the individual, but also with the families, so family is now included and recognized as an integral piece of this. 

Michelle Wagner, NAMI NH (she/her): Uh, they’re part of the solution. They may be part of the problem as well. And certainly, if their health isn’t good, they can be part of the problem. Uh my own experience is that I have two sons that within a year of one another developed really serious mental illness. The The oldest had full blown psychosis, 

Michelle Wagner, NAMI NH (she/her): and 

Michelle Wagner, NAMI NH (she/her): my coping skills ran out at about year three. I am divorced from their father. My mother had passed away. She was my primary support, and so I ended up, hospitalized myself because the pressure of having to deal with sick kids in the system that Isn’t, supportive of the families, was too much for me. So, I had a very brief hospitalization myself, for my own mental health, 

Michelle Wagner, NAMI NH (she/her): so, including families for me, that this is my passion project, is making sure that we address the needs of families and include families as part of the conversation. And with that Pam I’m going to go to you because you’ve worked with so many families that you can speak to this for us, 

Michelle Wagner, NAMI NH (she/her): your muted pan. 

Pam Brazeau – Parent: This is really exciting for me to see. I’m. I’m. Working really hard to not digress into experiences that were negative, because there were many right from the get-go. you know. Twelve years on the journey. Now I have to say at the beginning I wish I could go back, and it could be the way it is now, because it had a very negative impact on our son. 

Pam Brazeau – Parent: To not have family include taught him something negative 

Pam Brazeau – Parent: but, I’m thrilled to see we’re heading in a different direction now. Um! I wish that HIPPA was a little bit different, so that when we have certain situations the family could be included, and I wish that there was a little bit of thinking out of the box when it came to exactly when and how it was to be applied. Some people are to the situations in the mental health profession. 

Pam Brazeau – Parent: Um, 

Pam Brazeau – Parent: I’ve dealt with hundreds of families, and I mean everything that’s been spoken about are things that come up in group, And what we really try to focus on is our wellness like you’re saying can’t really be there for your loved one, if you’re not well yourself, and it’s so hard as a parent to not 

Pam Brazeau – Parent: revert to that role of saving your child and fixing the problem. And that’s something that I continue to struggle with. But I must say far less now, which has made me a lot healthier to recognize that. I can’t. 

Pam Brazeau – Parent: I can’t fix the situation. I can love and support and have hope, but I can’t do anything beyond that, and I mean I I I see in in group the same things that therapist would see in terms of wanting someone to give them the the golden answer. And and what do I do? Do I kick them out? Do I let him stay at home? Do I, you know? Make him clean his room, do I? I mean right from those, you know, elementary things. You know that we say don’t sweat the small stuff to the bigger to the bigger issues that we’re faced with. 

Pam Brazeau – Parent: And, it’s complicated, You know we’re families are complicated. There’s so many elements that play a role in our decisions that we make um, and certainly none of us are in a position to tell anyone what they should do but to provide. You know some kind of guidance. So 

Pam Brazeau – Parent: I personally have friends. Say to me, how come you do this like you live it? Why do you want to be involved in all these different roles where you’re supporting other people, and I I believe that whenever we do anything there may be some altruistic 

Pam Brazeau – Parent: component to it. But we all get something out of it, and for me, supporting other people. I constantly get those reminders of the things that I I know. But I forget. And, I think, hearing other people knowing you’re not alone, and being with other people that are on similar paths, is really helpful. And to know that the mental health community is 

Pam Brazeau – Parent: is trying to involve phase is going to have a tremendously 

Pam Brazeau – Parent: that is, I think, outcome for family, the family unit and for therapist to have a better understanding of their client. I mean, I think about my son going in and talking to a therapist. You can’t believe anything that comes out of his mouth. It’s. You know. How do you entangle all that? And certainly having the family history from the childhood to know, like where the person is coming from who they were before they were ill. is is really valuable, and and information that I’m glad to hear is now, 

Pam Brazeau – Parent: you know, being addressed more more positively for sure. But the brief thing is, 

Pam Brazeau – Parent: can we just ask you to turn off your video Because you, I think you’re having short bandwidth here, and you’re a little garbled. 

Pam Brazeau – Parent: So okay, 

Michelle Wagner, NAMI NH (she/her): yeah. 

Pam Brazeau – Parent: Now, if you can finish, that would be great. Yeah. Just saying that the whole grief, the whole grief component um, and knowing that, it’s cyclic, and it’s. You know the stages, the emotional stages that we go through as parents is flux. It’s never. You’re not going to go through it categorically from A to Z, and it’s over. You find yourself in crisis one day, and then the next day you’re in advocacy mode and it and it’s, and it’s accepting 

Pam Brazeau – Parent: in a lot of ways. But understanding and accepting that that is just the reality of the way it’s going to be, and being some acceptance of that can really save you a lot of angst in in the daily living. 

Michelle Wagner, NAMI NH (she/her): Absolutely. Thank you for that perspective, Pam. I did want to expand a little bit on the coordinated specialty care That’s being offered here in the State. 

Michelle Wagner, NAMI NH (she/her): So, I think of that as like ice cream coordinated special to cares the ice cream. So, we know this is the model that works. Then there are different flavors of the model the different flavors of the ice cream. So, there’s something called on Track, New York and ESA that they use in Oregon, and here in, in New Hampshire, and also in Minnesota, where we’re using the navigate model. So that’s the model of coordinated specialty care that we’re using here in the State that involves the family component, which is what makes it different and exciting, 

Michelle Wagner, NAMI NH (she/her): and that is now being offered at four different community mental health centers in New Hampshire. So, Sam down at Greater Nash, where they’ve been doing it for a whole lot of years now. So, they 

Michelle Wagner, NAMI NH (she/her): they’ve been they perfected it down in Nashua. They are new to the program over at sequent mental health with Carla, but they do offer uh the navigate model. We’re calling it the whole program helping overcome psychosis early. 

Michelle Wagner, NAMI NH (she/her): So, Nashua uh over at the Sea Coast, Exeter and Portsmouth area, then CLM down in Derry and also out at uh Manhattan family services in the Keene area. So, the intention is to bring that statewide. 

Michelle Wagner, NAMI NH (she/her): And so, we’re in the process of that. We’re moving forward with that 

Michelle Wagner, NAMI NH (she/her): so? And any I see you are answering questions in the chat. Any anything you’d like to add 

Dr. Anne Williams-Wengerd: to where the conversation has gotten to Here 

Dr. Anne Williams-Wengerd: It it’s It’s just a lot to undertake. So that would just be my message. 

Michelle Wagner, NAMI NH (she/her): Great. Thank you. I’m just thinking about. We still have about ten more minutes.  

Michelle Wagner, NAMI NH (she/her): I’m just thinking about the fact that this is a great program early psychosis. Uh, but what about those of us who’ve been kicking around for a while, like Pam said, Twelve years, I’m right there with her. Heidi also has a a loved one that she’s been dealing with for a long time, so 

Michelle Wagner, NAMI NH (she/her): we. We miss the boat right. But there is definitely value in naming this, and there being more research around this, 

Dr. Anne Williams-Wengerd: and I think there’s power in what you did, Michelle, by sharing your experience and saying, you know what I’m human. I reached the end of my research. I just think that was so brave. Thank you so much for sharing that, and I just think that is 

Dr. Anne Williams-Wengerd: powerful to to to name that. And so, as people that have been, you know, experiencing this longer, you have wisdom to share, and it is so powerful, and it’s a gift to a providers to learn from you, and it’s a gift to other family members who are earlier on in the path, 

Michelle Wagner, NAMI NH (she/her): and that takes me back to shame. 

Michelle Wagner, NAMI NH (she/her): We don’t talk about this topic. There’s mental health stigma and certainly psychosis. That’s sort of the pinnacle of what we don’t talk about. Right? So, normalizing the conversation around psychosis. We know that three and a hundred people are going to experience psychosis. You could get it from having Covid 

Michelle Wagner, NAMI NH (she/her): right. You could get it from taking a medication as a side effect. So, there are a number of us who will never be diagnosed with a serious mental illness, who may experience psychosis. So, being able to normalize that conversation, I know as a piece of this, because we know that the 

Michelle Wagner, NAMI NH (she/her): young people who are developing psychosis, they don’t want to talk to people about it because their stigma they don’t want to go tell their parents about it 

Michelle Wagner, NAMI NH (she/her): right? So, we have to change the conversation. Pam, do you have anything to add to that? 

Pam Brazeau – Parent: I totally agree. You know the conversation needs to needs to change for and uh together in terms of lived experience and being able to make a difference. Now, 

Pam Brazeau – Parent: although we can’t go back to the way things were, you know, or and change things from the past. I think it’s just. It’s just a fact of life with a lot of things. You know that we don’t always have the knowledge going into things and it’s. I 

Pam Brazeau – Parent: I think it’s really dangerous to play the what I could have. Um, very, very detrimental to your your well being. You have to look forward and and figure things out as we go along 

Pam Brazeau – Parent: and says my thing is unstable. 

Michelle Wagner, NAMI NH (she/her): Yeah, we we heard all of that. So that was great. And I didn’t want to ask oops. 

Michelle Wagner, NAMI NH (she/her): I don’t want to step on your toes here, Ben and I did want to ask about 

Michelle Wagner, NAMI NH (she/her): You have a support group. We have a support group here, and you can’t share for for family members and friends who have a loved one with early psychosis. So, it’s a family support group. Heidi and I both Co. Facilitate that group twice a month. 

Michelle Wagner, NAMI NH (she/her): Uh, you’re doing some other support out in your area. Can you describe that to us? We know families need support. 

Dr. Anne Williams-Wengerd: What does that look like? Yeah. And I think you know we’ve we we were right now. We had done a trial kind of a pilot project of providing a multi-family group support, where we to provided a coaching on coping skills, we’re going to hopefully revamp that, based on what we learn to add in a couple of ambiguous loss modules, rather than just jumping the skills of how parents can take care of themselves. We kind of want it 

Dr. Anne Williams-Wengerd: to create space for them, to be able to talk about something like grief. 

Dr. Anne Williams-Wengerd: And so I’m hoping that we’ll be able to develop something like that, and try to get some funding for that, you know, I’m definitely always looking for collaborators and people interested in getting that on board. So yeah, 

Michelle Wagner, NAMI NH (she/her): because we know it’s needed. We need to support the families.  Heidi, do you want to Just let us know you talk with a lot of families. 

Michelle Wagner, NAMI NH (she/her): What are your thoughts? 

Heidi Cantin, NAMI NH: Yes, and I was actually typing a response to a question. So, And I was gonna give a plug for in our, because that’s what they could do is call the information and resource line to get um some other additional support. But  

Heidi Cantin, NAMI NH: I I do feel that you know before this subject, I I feel, was feeling my own grief, but I do feel that the best part is when we can connect them to 

Heidi Cantin, NAMI NH: a a program, or you know, when I feel like I’m handing somebody over to a support group, and they can get that additional support. That is always great. and I did put in the chat the, the link to find the person. So, psychosis support group that we have, 

Heidi Cantin, NAMI NH: and I was gonna type in the number for information. the I and our number, because there was somebody asking about low-cost residential options, and there’s some brainstorming. I can definitely do around that, and I’m one of the ones that answers the information and resource line. So, I will put that number in the chat shortly 

Michelle Wagner, NAMI NH (she/her): great. Thank you very much, and I see a lot of the questions have been answered. difficult mothering, Judith Smith wrote. 

Michelle Wagner, NAMI NH (she/her): Difficult Mothering is certainly something, many of us have experienced difficult parenting very difficult, 

Carla LaRochelle, LMFT Seacoast Mental Health Center: if I may make a suggestion, Michelle, as well, at least that one thing that is really thought of as as a possibility as parents. But I’ve had several experiences where the the person that suffers the psychosis is not interested in any treatment, and, somebody asks about it. And that’s typically one of the reasons why they don’t want any treatment. 

Carla LaRochelle, LMFT Seacoast Mental Health Center: But I’ve had situations where the parents actually enrolled uh in individual therapy, and so uh 

Carla LaRochelle, LMFT Seacoast Mental Health Center: and command at the health centers. We typically uh have to uh address uh this type of illness. So, a a good portion of our therapist are trained in in our knowledgeable about psychosis, so 

Karla LaRochelle, LMFT Seacoast Mental Health Center: it’s not um uh. It’s not necessarily a bad thing. If, as a parent you enroll in individual therapy, and then you work with a therapist that knows about psychosis that can coach you through the uh, all the all the hoops and the in the challenges and the grief and the loss of of having someone that suffers from psychosis. So don’t be shy to control an individual therapy. 

Michelle Wagner, NAMI NH (she/her): Right very important. I would. I wouldn’t be here without it. I desperately needed it. 

Michelle Wagner, NAMI NH (she/her): Uh what does hope stand for? Someone has asked in the chat in the Uh. Q. A. Helping overcome psychosis early. So that is the name of the early psychosis treatment here in New Hampshire. Once again at four centers, 

Michelle Wagner, NAMI NH (she/her): and Let’s see information on dual diagnosis with Anna Signosa. But there’s so little Dr. Javier uh Amador is brilliant. Yes, I would agree. I hate to see heads not in here in the group. 

Michelle Wagner, NAMI NH (she/her): How to change the conversation that individuals can live productive lives with psychosis just need support along the way. Absolutely. That’s part of the conversation that we need to shed. We need to not normalize it. Yes, people live wonderful, amazing, productive lives. 

Michelle Wagner, NAMI NH (she/her): And Heidi uh heather! Pardon me as did the parents study mentioned law enforcement, integration, shame or trouble. 

Dr. Anne Williams-Wengerd: Yeah, So I did type in the chat there just a little bit that you know the parents I interviewed didn’t mention as much about shame as they did about guilt. Now it would not surprise me. This is I only interviewed thirteen parents 

Dr. Anne Williams-Wengerd: shame makes total sense to me that there would be some of that um. And then yes, the in experience of law enforcement absolutely the fear of calling law enforcement, but also, you know, should I shouldn’t die? And then difficulties communicating with them, and then stereotypes that law enforcement might have had about their child? Absolutely. 

Michelle Wagner, NAMI NH (she/her): Yeah, Thank you for that. Uh: and the family family family to family classroom. I’m. In New Hampshire, 

Michelle Wagner, NAMI NH (she/her): which is a great program. So, call the help line. You can talk with it, and we can get you hooked up. We have just a couple of minutes left. I just wanna go around the group quickly here and say, What would your takeaway be for the the audience? Who’s listening, Caroline? How about if we start with you? 

Carla LaRochelle, LMFT Seacoast Mental Health Center: Uh, I I just want to reinforce the concept of uh and said it earlier. But be kind to yourself in in Don’t. Be afraid to find help for yourself. 

Carla LaRochelle, LMFT Seacoast Mental Health Center: There’s there’s no story system that needs to go into this type of uh situation at all. Just find the help that you need the support that you need. And and do be kind to yourself. Don’t. Guilt yourself into nothing because it’s not your fault right? Absolutely. That is key, not our fault, Sam. How about you. 

Samantha Mulvey Greater Nashua Mental Health: Yeah, I would. I would agree definitely. Don’t be afraid to reach out for help. Another thing, too, if if you do have a a child that’s connected. Although they may not, the child may not be comfortable signing a release, or can always listen. We can’t confirm or deny, but we can still listen. 

Samantha Mulvey Greater Nashua Mental Health: So, if there’s stuff that you want to get off your chest, or you just want to relate to us, feel free to call the providers, even if there’s not a release, they can’t necessarily talk to you, but at least you can get some information off your chest. Great! That’s a good point. Thank you, Sam Pam, how about you? 

Pam Brazeau – Parent: Uh, I would say that for me personally most important component in my personal recovery is a peer support, 

Pam Brazeau – Parent: and knowing that I’m not alone and connecting with others that get what i’m living and um, and we all know if we’ve experienced it. Unfortunately, it’s not usually a friend or a family member that’s not personally experienced What we’re going through. It’s somebody that has 

Pam Brazeau – Parent: what we what we’re dealing with, and that can bring a lot of comfort and peace. 

Michelle Wagner, NAMI NH (she/her): Thank you, Pam Heidi. 

Heidi Cantin, NAMI NH: I just want to remind everyone about self-care. You know we this is a lot to go through as a parent, or even some of us that do it professionally. Also. I’m the worst one I have to remind myself. Also, I actually schedule it. But definitely be kind to yourself and schedule that self-care, so that 

Heidi Cantin, NAMI NH: when your loved ones need you, that you definitely have a better response because You’ve taken care of yourself. Great. Thank you, Heidi. Last words from you in. 

Dr. Anne Williams-Wengerd: Yeah, I would just echo. And just say that if you can connect with your peers, and you can you hear their stories and you have compassion for them sometimes? Then you can have compassion for yourself and realize you know what I’m going through this, too. I deserve this. And so, I think that that those go together really well. So yeah, 

Michelle Wagner, NAMI NH (she/her): thank you all. Thank you very much, and for sharing your research with us and Sam, Carla, Pam and Heidi for joining us. Thank you in the audience for being with us today. We do ask you please take a moment to fill up the evaluation form. You can find the link in the chat. I think I could put that in there. After you fill it out, you’ll automatically receive a certificate of attendance. 

Michelle Wagner, NAMI NH (she/her): Just a reminder, a recording of today’s discussion will be posted on the education page of onward and H. Dot org find all kinds of early serious mental illness resources There 

Michelle Wagner, NAMI NH (she/her): you will receive an email in the next couple of days, which includes the links for the website and the evaluation for questions or comments. Please reach out to me and Wagner at Nami and H. Org. We look forward to seeing you next time. Until then, take care. 

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