Raising a child with ADHD, Oppositional Defiant Disorder and Anxiety

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Welcome to Mothers on the Frontline Podcast. Today, as part of our Just Ask Mom Series,we listen to a Mom of a 9 year old diagnosed with ADHD, Oppositional Defiant Disorder and Anxiety in 2014.

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Tammy: Tell us a little bit about yourself before or outside of mothering, who are you, what do you love, what do you love to do?

Mom: I love yoga. I’m a very fanatic yogi and what has happened with my son has really put me in touch with yoga and with mindfulness so I really like to do that. I like to walk, I like to do gardening and I just overall, am a very positive person, and I like to just have fun.

Tammy: Well that’s wonderful, it’s wonderful. So I want you to pretend you’re talking to parents. What do you want them to know about your experiences? What can you share that may be helpful for them to know?

Mom: So in 2014, my son was officially diagnosed with ADHD, oppositional defiant disorder ODD and anxiety, and we have been going through a struggle which started actually with him in preschool. Where we had seen some of the signs but we weren’t quite sure.He also has allergies, and because of that, he had to be on steroids sometimes.So it was very hard to figure out what is normal to 3-year-old behavior, what is induced by being on steroids and what is behavior that is cause for concern.And at that time too when I would be talking to my parents-in-law, often they would say like, well, you know your husband was just the same when he was little. But then after a while, we were really starting to struggle. It was hard for us sometimes to enjoy weekends. Where you’re looking forward to Monday because it’s so draining, emotionally draining to be around your little guy.And there comes a huge guilt complex with that because you feel like it’s your fault, you’re not doing something right. And after a while, my husband and I,we were just like, we need help. And at the time he was in daycare which also had a preschool tied to it. They were very open to working with us, so we, theysaid like, we’ll have somebody from the AEA [Area Education Agency] come in, evaluate, and then we’ll just see what happens. We did that. There was some cause for concern and then we also, on our own reached out to psychologist and start working with her. And then in 2014, by the year before he went to kindergarten, he got officially diagnosed. So which was for us, a lot of things sort of all the puzzle pieces start to come together. And we were just relieved in a way. But then, on the other hand, it’s like there’s a huge learning curve. Because now it’s like, I know what it is, but what do I need to know? So…

Tammy: Right. So, for parents who are out there who are starting their journey, they haven’t had the diagnosis yet or ones that have just got it. Like what could you talk about in terms of barriers that you have faced that had been hard for you to get your child the help he needs?

Mom: Personally for myself, I think I was the biggest barrier because sometimes you’re in denial and you think like oh it’s just the age. It will be okay. This will, well, will resolve itself down the line but it’s not. So it just, once you come to that realization and also give yourself a break. I think sometimes as parents,we all try to do a really good job but we’re only humans too but we’re really hard on ourselves. And a lot with mental illness diagnosis, there’s a lot of shame I think sometimes connected to it as well.

Tammy: Absolutely.

Mom:So people or parents it holds them back at that shame but it’s okay to ask for help.

Tammy: Absolutely.

Mom: And I think that sometimes that was a barrier for myself. Like I’m always being very independent. I’m a go-getter. I just get things done myself. But there was a point that I reach that I was like I don’t want to live like this. This is not normal. If I’m doing something wrong I need help and I need somebody to let me know, how I need to adjust my parenting style because I want to enjoy the time I spent together with my little guy.

Tammy: You brought up several things that are really important. I mean one is it’s really confusing and you don’t get to have a control. You have a kid, you don’t get to have a scientific control and say okay what really is causing this. Let’s change some variables.No, and especially for those of us who, it’s our only or first child. It can even be, we don’t know what normal is and it’s such a wide range. So it’s hard to know if this is neurotypical development or it’s something we should pay attention to. Is it just quirky or is it something that’s problematic that they need help with. So that’s just hard to know. You also brought up another element which is the shame, right? And so asking for help and the third thing is if your child, there’s something going on, we often have to adapt. So it isn’t that our parenting is wrong, it’s our parenting is wrong for the child with this neurology.

Mom: Exactly.

Tammy: So there’s no one right way to parent. It depends on the child’s needs. I love that you brought up all that. I just wanted to go back over that because I think that’s a really important for us trying to go through it. It gets all mingled up. So I love that. 

Mom: And that was what I had too. I was going by how I was raised by my mom and dad, and I think they did a superb job, but I was a very easy kid. I will always, I listened, I didn’t fuss a lot and I was also raised and I think a lot of people of our generation are raised like that. If mom and dad ask you something, you do it and that was the hardest for me. Like why is my kid not listening to me? And because of his ODD diagnosis, he’s not as much defiant towards the dad but it’s more towards me.Which is weird too because they always say like they will be less defiant to the authoritative person in the relationship but that’s actually me [laughs] who’s the one that [inaudible]. He’s like yeah if go to mommy and asked her that, I’m not going to get away with that. I’ll just go to dad. [laughs]

Tammy: [laughs] You know but that’s another thing. Just like all kids and all human beings they are different with different people and it can be really, it can hurt our feelings.Like it can be really hard when we’re the ones seeing the symptoms, right? And so that can be really hard and often it could be because we’re the parent they feel safe with or the person they feel safe with in terms of they know they’re not going to not love me if I act up. As opposed to like a stranger, a teacher or something like that. They might hold it in more or something. Yeah. No. It’s really hard. So, same thing. Thinking about parents out there, what has worked really well in getting help for your child? What had been some successes or things you’re like, thank goodness that that happened or is available or–?

Mom: The number one thing for me was first, I had to change myself before I was able to help my son. I had to let goof control. I had to let go of worrying and that goes often with control because you want to know, oh, what’s going to happen then? Well, how is this journey going to be? Is it always going to be like this? And after a while, I just let go of all of that. I’d lived day by day. I take one day at a time. If we sometimes have a bad day, I always say, tomorrow is another day and we start with a clean slate. And I tell my son that as well. For myself too, I let go of emotions because I had such an emotional kid, and he still is but we’ve really worked hard with him on helping gauge his emotions better or that he’s just more aware of them and then he will be able to stop himself. And I think sometimes maturity helps with it as well. But at the time when we were struggling, I would always get like asking put your shoes on. It was like World War III. And it’s the battle you engage and you get worked up and you get upset and you start yelling which I hate to do or you hear yourself the whole time just saying no, no, you can’t do this because he’s like all over the place.That for me was just letting go of that control and just being aware of that.Like I’m not going to go invest my emotions in that. I’m going to be very patient. I’m just going to take a step back and stay calm. And that has really helped like it’s not always successful.

Tammy: It’s not easy. 

Mom: Sometimes I have to dig really,really, really deep or I’m thinking like, oh, I really want to do this or this and this right now but no, I don’t look good in orange so I’m not going to do that. But then again, that helps me just sometimes to get through it because the sense of humor. Just being aware of like this is a very tough situation and I’m just trying to do my best. And sometimes I can’t do that and I walk away.And I give myself that break then I’m just like I can’t handle this. I just walk away and it’s okay. 

Tammy: It’s not only okay it’s great modeling for your son. 

Mom: I try to. Yeah.

Tammy: And it’s really important for you and me and all mothers and caregivers. It’s wonderful that you’re doing that. But it’s hard. 

Mom: It is hard. It is extremely hard and sometimes you feel like I am on top of the world, I got this down, I like my new parenting style, I become calmer, more patient, I don’t let my emotions get a hold of me that much anymore and other days you’re just like oh,I suck at this. 

Tammy: Right now, it sounds like you’re talking about when it was really rough, but even when things are going well, we recognize, they change from moment to moment and so we like to ask right now, do you feel like you’re swimming, drowning, treading water, where are you at right now?

Mom: I feel like I’m swimming but I also know due to his ADHD and his ODD, especially at the beginning of the school year can be quite challenging. He knows the principal, he knows his special ed teacher but it’s always like he has a new teacher. So he tries to kind of figure out like what can I get away with and this is where the behavioral issues like the defiance will come in. He doesn’t want to do his math which he’s really good at but he has a love-hate relationship with it. And he’s just trying to testing the waters so I know maybe by next week, the week after that, we’re going to hit that wall where they’re going to say well, he did this today and he did that today and then after a while, by October,November, he’ll be like, no, the teacher, she sticks to her guns. I can’t manipulate her. I’ll just comply. I’ll just do my math. I’m good but I always am aware of that. Like last year, we hit a wall again to where his medication that he was on for his anxiety was not working anymore. So we really saw, because he was older, so we had to switch medications.

Tammy: Which happens a lot when kids are developing. 

Mom: Yes, exactly because the current dose like what he was on was no longer working and we just saw certain behaviors reappear again that we were like, oh, we thought we were done with this. But then we were aware of that and then we informed the school about it.We said we’re going to go to the psychiatrist. We’re going to explain this and probably we’ll switch medications which happened but then most of his medications, it takes about at least four to six weeks so we communicate that to the school. That was like hang in there. We know it’s rough. We’re with you because what you’re experiencing in school, we’re experiencing at home but then the medication started to work and he’s been doing great. So I know down the line, we will always hit rough patches but I’m aware of that. It’s almost like an expectation that I know like, yeah, we’ll go there.

Tammy: Let’s talk about that a minute because I think that’s really important. It seems to me a common thing, I know in my own experience when I talk to other mothers and other caregivers. The first time is devastating when you first have symptoms and then things happen maybe a therapy, maybe a medication, things seem to do a little better and then things happen again and that seems to me the most devastating because you first thought we’ve knocked this like we have this imagination–

Mom: We got this down.

Tammy: — we solved it.

Mom: Yeah. We solved it. [laughs]

Tammy: Like it’s cured. No. And so but then there’s a kind of confidence that comes with going through a few cycles knowing you can do this. You got it. It’s hard but you got through in the past. You’ll get through again. Take it a day at a time. That’s how you doit so I think that’s a really important thing for people to hear who are just having the first time or what I think is even harder is that second time things start to get rough. To know it will ebb and flow and you’re okay, you’re gonna be okay. 

Mom: Yeah. Exactly. And it was how you described it. That’s exactly how it is because I think even if you get a diagnosis in a way you have the expectations. You’re like I know it’s really rough right now but later on, they will be okay and all of this is just magically going to go away. No, it’s not. It’s just going to be a day they become older. A lot of again, maturity helps a lot with some of the disabilities that my son has but my husband actually got diagnosed a year afterwards because he said, well, I’ve been having a lot of these struggles that I seen in our little guy. And a lot of the behaviors I was like that when I was little. So I think I’m going to get myself tested as well. So he has ADHD as well but it was a good thing. It was kind of knowing like and for him especially, going on medication, that helps so much.

Tammy: And this is another common thing. It happens for a lot of parents because there’s a lot of genetic passing down many of this conditions and our generation and generations before us didn’t have the knowledge and the outreach on these issues so I know many people who are getting diagnosed after their kids are doing it. It can help everybody so much. So that’s really wonderful that happened.

Mom: For us, it’s been a real, areal positive like you go through that, you sat on that journey and then you were like a lot of things and especially for my husband, a lot of things started to make sense in his world as well then. And then some of it was a little bit grief knowing that I remember when he went the first day on his medication, by noon, he said like I’ll never forget it. Wow, is this what it feels like to be normal? And then the second thing that he said was, I wish I would have had this medication when I was in college. And that to me just showed how much of a struggle it can be and that explains also the stigma that is still on mental disabilities because often people, they will look at a person, they’re like, well, I don’t see anything wrong with them.

Tammy: Invisible disabilities are tough. 

Mom: It’s really tough and then there’s the behavioral issues and then kids start to act out but then if you don’t understand the disability like people are well, why are they doing this wrong? It’s okay. It’s normal because I always say, there’s a lady that actually wrote a book this year which I’m a big fan of and I would strongly recommend to parents, especially to moms to read it. It’s Differently Wired:Raising An Exceptional Child in a Conventional World. It’s by Deborah Reber. And she calls her kid differently wired.

Tammy: I like that.

Mom: And I call my kid differently wired too or an atypical kid. It’s like they’re just a little bit differently wired. Their brains make a little bit, there’s different connections in there but overall, they’re still good kids. They’re fun kids. Because I think sometimes there are so much attention is being given to their negative behaviors and these kids so much need to positive reinforcement. They needed so much more than your regular wired kid. 

 Tammy: Absolutely. Absolutely. And Ithink that’s true and also sometimes, the differently wired comes with benefits that we don’t talk about enough too. I think that’s one the things as well. Sowe’ve been talking a lot about your journey with your child but what is yourself-care routine or more appropriate survival technique? I know you mentioned yoga and mindfulness which are so key I’m sure. So do you want to talk a little bit more about that? How does that help you or are there things you do to sort of take care of you?

 Mom: Sometimes it’s easier thanother times. I feel sometimes when things are going really good, you’re very motivated to go to yoga class and being mindful but I notice when there is survival awareness or survival mode. It’s like I’m tired. I don’t want to go do this.No, I don’t feel happy right now. I don’t want to go to a yoga class but for me, if I’m aware of it and I can have that conversation with myself then I push myself to yes, you got to leave everything right now because you talking to yourself or having this little mind games going on, that means you need to get your butt to yoga and go relax for an hour and then usually, by the end of that class, I’m like, oh, I so needed this. [laughs]

Tammy: I’m me again. [laughs]

 Mom: And for me also, I have greatfriends. They understand. They’re part of my gang. They don’t judge and sometimes when I’m struggling because at sometimes you don’t want to necessarily talk to your husband because you’re going through the same thing.You’re talking about it but you always need that perspective. You always need to talk to other people that have gone through the same experiences or understands and that really helps like when I’m sometimes struggling and I’m like, oh, what am I doing wrong? Or not just that. You just hit a rough spot again. I just I’m like okay, we’re going to have breakfast. Get together with my friends and then after a two-hour talk, I’m like, I got this. 

Tammy: That’s a really good point because as you said it changes and I know with my own sisterhood of friends,right? We’ve been lucky that we’re not all crashing at the exact same moment somehow. I don’t know how that works out. It’s only happened once where we’re all like oh, no, what do we do? We’re all drowning right now but so you’re right. Because if you’re talking to someone like a spouse, a partner, even a mother or father, if they’re helping you take care of your children, if they’re involved with it and they’re going through the same thing at the same moment,they’re going through it too. So having that outside group that understands is so helpful to have that support and I think that’s right. So we like to end with this question. And we feel like anyone raising kids, this has nothing to do with neurotypical or not. There are some funny things those kids have done or that have happened in our lives that make us smile. So we like to ask, what is your most laughable moment when you think about your experience with your son? Anything that makes you smile or–?

Mom: He just makes me, he’s got a great sense of humor. I’m always so surprised because sometimes you get so much negative feedback what goes on in school and the school he goes to, they’re really great about also they celebrate the good things and we tell them to please don’t only you tell us when things are going wrong. We need to hear it when he is doing great because at school, they make a big deal about it and we make a big deal about it at home too. And usually, it’s a sense of humor. He will say this, I can’t quite recall thing but he’s just funny. There’s one thing, yeah. When he was little, I have a friend and she’s called Mary and she would come and babysit him at times just when we wanted to go get a break or,and she was very understanding. She was unjudging or anything and he knew howto handle him. And then one time, I was like yeah, Mary is coming a later on and he’s like Mary? He’s like, my Mary? And I’m like, yeah, and he looked at me very seriously and he’s like well, you need to get your own Mary. 

Tammy:

[laughs]

I love it.

Mom: And I’m like, okay. 

Tammy: No sharing Mary. [laughs]

Mom: No. 

Tammy: That’s great. Well, I really want to thank you for taking the time to talk to us and share your story and really appreciate hearing about it and how you and your family are doing. So thank you.

Mom: Thank you for giving me the opportunity. 

Tammy: Thanks. 

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You have been listening to the  “Just Ask Mom” series, part of the Mothers on the Frontline Podcast, copyrighted in 2018.Today’s podcast host was Tammy Nyden. The music is “Olde English”, written,performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFrontline.com or subscribe to “Mothers on the Frontline” on ITunes, Android, Google Play,Sticher, and Spotify. Mothers on the Frontline is a non-profit 501 (c)(3)organization that uses storytelling for caregiver healing and children’s mental health advocacy. We strive to reduce stigma, educate the public, and influence positive policy change through our podcast series and storytelling workshops.We are currently working with Grinnell College to document and archive stories of lived experience with the school to prison pipeline, an issue importantly connected to children’s mental health and wellbeing. If you would like to support our work, please visit our website and make a tax deductible donation at mothersonthefrontline.com.

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Five Ways to Fill Your Cup

 

In thinking about National Family Caregiver Month, I was reminded of a previous Mothers on the Frontline podcast episode in the Just Ask Mom series, called “Filling up your Cup”. In it Alissa explained the phrase, “my cup runneth over” in a way I needed to hear as a caregiver. “What runneth over is for me to give you, what is in my cup is for me.” She continued: “I have to do my best to keep my own cup full or I’ve got nothing to offer – to my children, to others, to advocacy, to change – I got to do my best to keep myself whole and intact as well, or it does no one any good.” This idea is at the very heart of our work at Mothers on the Frontline, not because we live it, but because we aspire to.

Sometimes when loving and caring for someone with mental illness, it feels like there are holes at the bottom of our cup. During the holiday season, when we are barraged with images of happy families and tranquil moments of joy, those holes can feel vast. There are the practical challenges that use up our ‘juice’: finding care and services, navigating health and school systems not set up to help children like ours. There is the loneliness and isolation that stigma and discrimination places on the child, caregivers, and siblings – more spilled juice. But perhaps the most draining are the cruel comments that come from our child when they are ill and the cruel comments that come from others about our child or family who do not understand what is going on. It can leave us feeling pretty empty, and this emptiness can feel magnified during the “season of giving”.

So what are we to do? In this age when “self-care” has become a marketing slogan for spa packages and beauty products, what does it really mean to care for and love oneself, especially when one’s life is structured around caring for a person with a serious mental health condition? What “self-care” is really available to all of us, no matter our financial situation or the current level of crisis we navigate. In this podcast episode, Alissa mentions five things we can all do:

  1. Take a deep breath. Breathe out all that you are holding in. Breathe in life and self-love.
  2. Know “this too shall pass”. Whatever crisis is presenting, it is temporary. I would add that so too are good days -and so here is permission to fully enjoy those good days when they come. They are not times to merely catch up and get things done in preparation for the next crisis. We get overwhelmed by an imagined future laid out in front of us, but the moment at hand is manageable. Stay there and keep breathing.
  3. Physical exercise. If you are like me, this can be a real challenge. Try to find something doable and enjoyable for you. Whether it is light stretching, a walk outside, etc. Find something that is realistic for you and that feels good. This is not about looking good or fitting into that certain pair of jeans. This is about feeling good in and loving your own body – supporting it so it can support you.
  4. Taking care of your own mental health needs. We live in community with our families and those under our care. We affect and are affected by each other. There has been significant research into how a mother’s depression or anxiety can affect her child. Recently, researchers are finally starting to ask how a child’s mental health condition can affect their mother’s health. (See this article.) If you can benefit from therapy, medication, support groups, etc., give that gift to yourself. It does not matter whether your mental health needs predate your care giving or were brought about from stresses and traumas associated with care giving: you deserve the support you need to be well.
  5. “I am on the list too.” In our long to-do lists as caregivers, Alissa reminds us that we are on the list too. This means being intentional about filling our cup. I would like to add that how we do so will depend on our situation and we need to be flexible as our situation changes. But that does NOT mean taking ourselves off the list. Ask, “what can I do for me in this situation?” For me right now it is waking up 30 minutes earlier so I can journal and drink a cup of coffee while it is still hot before my boys wake up. (Seriously, as a mom, drinking a warm drink while it is still hot is a big deal!) This simple thing is not possible in those situations when my son does not sleep due to mania. Then I have to find something else – maybe it is using respite services for an hour so I can drink a hot cup of tea undisturbed at a coffee shop or with a friend.  For years while we were on a waiting list for services, there was no respite – then I might have used the brief moments when I took my shower to breathe deeply and intentionally – that might have been all that was available to me. But it was still something that made a difference. All too often, when the situation changed making my previous self-care impossible, I just dropped it, taking myself off the list completely and it always results in an empty cup. This November, let each of us commit to filling our cup, in whatever ways we can, so that it runneth over, nourishing ourselves, our families and our communities.

And if there is a caregiver in your life, in this season of giving, there is no greater gift than helping another fill their cup. Whether it is being present with them in their pain, sending a kind note, or doing what you can to provide them a few minutes to drink their cup while it is still warm, magically that small act (which does not cost a dime) can fill their cup to overflowing.

Listen to Alissa’s full interview on the Mothers on the Frontline Podcast: Just Ask Mom Series, episode 7.

 

 

You are everybody you’ve ever been, Just Ask Mom Series episode 19

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In this episode, Diana shares her experience mothering a 17 year old daughter with anxiety and depression.

Mentioned on this episode:

NAMI: National Alliance on Mental Illness: https://www.nami.org/

Transcription

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Voiceover: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a mother’s on the frontline production. Today we will listen to Diana, an Iowa parent with a 17-year-old daughter with anxiety and depression.

Tammy: Tell us a little bit about yourself before or outside of mothering. What are your passions? Who are you? What do you love?

Diana: Well, I enjoy biking and taking long bike rides, not competitively or anything but just kind of peddling along. I enjoy yoga and take some time for that when I can, and I enjoy writing.

Tammy: Wonderful. Do you like creative writing, journaling, what kind of stuff do you do?

Diana: All of that. I used to write for the newspaper when I’m just column and just kind of a life in the day of life and of mom, and that was fine.

Tammy: That’s wonderful, it’s great. I want you to pretend that you’re talking to people who just haven’t had any direct experience with mental illness –   whether in their own life or anyone else in their direct family or friends- they just haven’t had to deal with it. What would you like them to know about your experience?

Diana: What I would like them to know beyond just my experience and just in general but particularly with me if you see me, is that it isn’t always what you think it is and it doesn’t always look how you think it’s supposed to look. Please don’t make the assumption that we might be wrong or dramatic or overreacting, and I know it might seem like that at times, but please just put compassion first and really trust that somebody who is living a situation particularly with their own child, their own family member. They are the expert and if they say something that doesn’t really make sense to you based on what you observe of that child or that person, please just be compassionate and believe that there’s probably a lot going on under the surface or things that you don’t understand about it, and appreciate their honesty and being able to share.

Tammy: Absolutely. Can you think of examples of where people have just not seen –  like they see it one way but something else is going on  – so that you just wish you could just sort of scream?

Diana: Every day.

[laughter]

Diana: Every day. An example that comes to mind is a parent-teacher conference in which I was trying once again to gently and with a friendly face remind teachers that my daughter has a 504 plan, and that she has these accommodations and that they’re legally required to provide those to her. We were having a little difficulty and the teacher said, “Well, I just don’t think she’s anxious, I mean I don’t see it. I don’t think she has anxiety, frankly”, which is kind of a classic example. I actually appreciate the candor that that teacher showed because there are other people who are more passive about it but they certainly seem to be indicating that maybe my hyper-vigilance is causing anxiety. That’s tough to take, it’s a little insulting. There are people who sell my daughter short and kind of limit her based on, “Well if she’s really anxious then maybe she should just do this and not even try this other thing”.

Tammy: I think it’s a really good point because mental illness is portrayed a certain way in the media and movies and all this kind of thing. The assumption is you could see and know what is going on with someone, but someone could be going through a whole lot and look fine on the outside sometimes, or at least be able to do that for a small amount of time whether at school, at work or what have it. Right? It would be easy for someone to not notice because they’re not living with it day to day.

Diana: Right. I think that my daughter is very much like that. I think that girls, in general, are designed with being a people pleaser in mind more often, and so you might not see what you think you’re supposed to see if somebody has mental illness. I will see and hear all about it –  let me assure you  – when the wheels come off the bus later when they’re at home which is their safe space and you know which is that.

Tammy: Talk about that because that’s what I think people don’t understand for so many of us our kids. As soon as they get home to where it’s safe or to the people they’re safe with all hell breaks loose as they say, it gets really rough because finally, they can let go of what they need to from the whole day. Is that something you experienced?

Diana: Yeah, I have experienced that since she started school, honestly since she was five years old. The very first thing that she would report and it was a daily, and I never even put it together the those from school was, “I have a tummy ache”. Like I would say, “How’s school?” and look over and pickup, “How is school, it was good, I have a tummy ache”, every day. So, I went to the pediatrician. Anyway, so the point is that it’s very long-standing and it was a long road for even the medical professionals to realize that it wasn’t physical. Well, it was a physical ailment but what might be underneath it because a child of that age lacks the words or then even knowledge of what it is. But I think going back to what I said earlier about “Please don’t diagnose us or say that I might be part of the problem”, well, if she’s only doing this around you, what is only doing around me because she can. She knows that I will still love and accept her no matter what, and she is barely holding it together – and so are a ton of other people in school every day or at work even. They’re just waiting to be able to come undone because they perceive that to be successful and functional in our society that they have to assimilate. They have to be like the other people around them and so they’re exhausted by the time they get home because not only they had to face several stressors throughout the day, they’ve also had to pretend to feel like other people who aren’t experiencing it.

Tammy:  They’re exerting a tremendous amount of energy. They’re not only in pain internally, they’re exerting so much amount of energy all day long. They get home, they’re exhausted. So what does mom get? Mom gets the exhausted –  so you get the full meltdown? So, us moms, we get all that, so we’re stressed and tired because we have that sometimes full time.

Diana: Right, and then we are the crazy person because we then get on the email at 10 o’clock at night. “The following is what my daughter perceives happened today.” I realized because sometimes I would get emails where they were assuring me that wasn’t the case, I know that’s not the case. I’m relaying to you that that’s what she thinks happened and so please have some compassion tomorrow when you see her again, love up on her, and those kinds of things. You really do come across as the crazy parent because A, they don’t see that and B, as we exhibited, they get late-night seemingly insane emails from a parent.

Tammy: Right, and they’re not seeing what you’re going with your child. I just think there are so many levels of what you just said that’s so important  – that it’s invisible, and we do sound hysterical a lot of the times. But ultimately this is the life of our kid on the line. So, of course, we feel that way, right?

Diana: Yes, and I think that every– well, I want to say teacher but it probably goes beyond that and society, but people who are part of a system should be forced to watch like a documentary or receive some basic level of training on some of these things that they might not know. Because I think if you saw it you wouldn’t question me anymore. You’d be like, “Holy God, that was awful”.

Tammy: It’s not like what it looks like on TV right. I always joke I wish my son had TV autism or TV bipolar, or TV something because it’s done in a half hour and wrapped up then nicely, everything’s solved, right?

Diana: Yes.

Tammy: In real life, it doesn’t feel that.

Diana: Or it goes in one direction on TV. That’s another thing that I would say to people who don’t live this journey, something that I can share is, “Please don’t assume that there is a trajectory and we’re moving across like in one direction. How are things going is a minute-to-minute if not day by day conversation, and so please forgive me when I seem frustrated”. If you say to me, “Well, she seemed like she was so much better. She seemed like she was feeling better”. She did. That was two days ago.

Tammy: I think that’s so important too because as a caregiver isn’t that disruptive and hard to plan and all that because you never know what the day’s going to bring. It’s not like you can say, “We passed this phase, now we’re here”. It’s constantly coming from different directions.

Diana: I have said is like chasing a chicken around a barnyard. That is the movement, it is every single way. Her dad texted me because he was out of state and he had been gone a few days. He said, “How is she doing?”, and I said, “Lots of different ways. You missed four whole days, she has had 18 different plateaus”

Tammy: “In the last two seconds or, yeah.” No, I think that’s really important because it does change constantly. So, as you think about the journey going on with your child, what has really been a barrier to getting the help your child needed or something you tried that just didn’t work in your case that might be helpful for people to know that this was a barrier?

Diana: There have been a lot of barriers and since it did start when she was very young and progressed through these years, and became more discernible to the untrained eye, so I would say some of the barriers along the way were her dad and I. Like our lack of understanding what was really going on and always well-intentioned but sometimes probably detrimental plans that we did. I have a background in behavioral health, so we did a lot of like charts and if-then and first-then and I’ll know you’re ready when this. We have always wanted to be helpful but haven’t always known what the hell we were doing.

Then at the point where we were getting– she had a physical and her blood pressure, she was a little girl, off the charts. They said, “She does seem to have an amazing amount of anxiety. We were given an eye test and she seems to be having like a panic attack. We better bring her back in a week because that’s really not healthy for her to have that high of blood pressures”, so when she came back in a week and they just did a blood pressure and they were taking more of a mental health approach, they referred us for psychiatry at that time because of the high level of anxiety that they saw just at the physical. It was something that did not work. It was a bad fit. It was a psychiatrist with no bedside manner, it was awful.

I have some background in this area and I will say it was awful. So, that was really limiting  – medical appointments that are a trigger for her.

Tammy: That’s not easy in this situation.

Diana: Yes, and you get the person to the appointment and then it blows up also, it was not good. So, that kept us from getting medical intervention for a whole another a year because that went so poorly, and her dad felt like, “this is– you know what I’m talking about, which is that she doesn’t have a mental health issue. So let’s stop coming at her with it and stop projecting things onto her.” That was something– school is something that hasn’t worked and it hasn’t worked for a long time but we’ve thrown a lot of things at it. Seventh grade was where it really hit the fan, and we realized she could not handle it and she’s breaking down every single day.

We dual-enrolled her and then after winter break had to just pull out entirely and home-school, but during that time we also were able to get her therapy and medication because it was becoming so abundantly clear that she needed more intervention, and that was seventh grade. Then in ninth grade again she went to school in eighth grade and it did work. She was on medication things seemed to be going pretty well and she had learned the building in the system which was doing well in the seventh grade. But then in ninth grade when she’d make another transition and another change just the school anxiety just really ramped up and to the point where now she is home-schooled and she’s not in the public school system because they just don’t have what she needs there, and she cannot deal with the many levels of stress.

Tammy: Can you talk a little bit about that because when it comes to children’s mental health as opposed to adults and I’m sure this is true for adults but not at the same level, kids are going through a lot of changes. You mentioned like structural changes, huge changes from elementary to junior to high school, and what your days like and what your life’s like, and your social world is like. But physically, our kids are changing immensely between childhood, adolescence puberty so their bodies are changing. So, sounded like your daughter was doing well with medication and then she wasn’t, and that seems typical for a lot of families I know. Something works and then all the sudden it doesn’t. I know that happens to adults but I think for children when you’re going through so many physical changes, social changes at such a phenomenal level it just feels like you’re constantly starting over again. Is that sound right or?

Diana: Yes. That’s actually been an added layer to this struggle. Starting in ninth grade she became med non-compliant, which was a very big hurdle. We had allowed her to go off her medication. She was doing really well in eighth grade and felt that she didn’t need it and so that was done with our blessing but then in the 9th grade when she was really struggling, my mantra has always been, “I’m not saying you have to go to school. I’m saying that everybody who is mentally and physically healthy is at school today. If you’re not we need to be looking at what’s underneath, and that’s what we need to be doing. I don’t need you to go to school just to have geography of being in that building. I need us to look at why you can’t feel like you’re successful there and why it is putting you past a point to be there”, and so these are the things that we can do.

She just felt like nothing ever works. It doesn’t help anyway and so she was on– we got her to do a medication that, of course, this is I’ve heard so many people share this journey and frustration, that medication did not work, and so for her, it was fueling the, “I told you nothing works”. We had our four to six weeks, went off of it and then the next medication that was prescribed she just was never compliant enough for us to realize if it was working or not. That was a huge struggle and then in a meantime, I think what am I going to do and she’s missing school, and again we’re going back to our behavioral things which were not the point. It was not the point in her ninth through a tenth-grade year.

Another thing that we didn’t identify was depression was starting to take over anxiety and we were still considering it to be anxiety, though the medication often is the same. But the way I might approach things with her, recognizing that it’s depression, not laziness or avoidance, that kind of thing. We’ve been our own worst enemy a few times and–

Tammy: Well you have to be gentle with yourself about that. First of all, everything you said about that, what I love about this podcast is I have parents who don’t have children’s mental illness go, that’s true for all parents too. Every parent messes up and tries a bit. We all learn as we go but here it’s really hard because as you’re saying you don’t know what’s working.

Diana: You feel like you’ve got to be …

Tammy: You don’t have a control, right?

Diana: Right.

Tammy: You can’t take control of your kid and say what’s working or what’s not.

Diana: Particularly with the medication, I just feel like I am putting pellets into a cage and hoping for the best. We’re on another new medication right now that we’re in the four to six weeks range, and that doesn’t appear to be helping either and then you have to decide if you want to up the dose or try something different and go another. In the meantime, it is very painful to be inside their skin and you feel rather helpless.

Tammy: It’s just hard to watch them suffer.

Diana: Yeah, and not everybody going back to the people who don’t live this day in and day out, and everybody sees that they are suffering. Most of our kids are amazing actors and actresses, and they want to be accepted and be part of a group and be normal.

Tammy: I would add to that that most of our kids that have mental illness are incredibly strong. The strength it takes for them to do what they do is immense. If I’m hearing about your daughter and she must be an incredibly strong person to be able to make people think she’s just fine when she’s dealing with all that, it has to be really hard to get through.

Diana: Yeah, and she actually at a point last fall where she did sort of have a full breakdown, and that is nothing that I had seen before, and it was like someone broke a toy almost. Like she became monosyllabic and she is somebody who never left the house not looking on point, she shuffled around. When I would need to take her to appointments she would still wear her pajama bottoms and I’d have to hand her her shoes and the light behind her eyes had gone out and so I do think in that time. Also, she was incredibly strong because just staying here like was my main goal and because I could see that the weight of the pain was almost unbearable, and so at that time she couldn’t. She tried a couple times to leave the house and she had some friends who really hung- and like for being teenagers -they really hung in there and didn’t give up on her over the months. She did try to go out and see them a couple times and didn’t make it, but I was so proud of her for one time we got all the way to the door, all she had her hand on the door.

Tammy: Wonderful.

Diana: Yeah, and now she’s able to leave the house and go see her friends and things and–

Tammy: That’s great.

Diana: Yeah, so I think that there are little wins and you just have a different life, you celebrate different things.

Tammy: Absolutely, but it’s so important to celebrate them and recognize.

Diana: Yeah.

Tammy: Yeah, absolutely. So, what has worked well what in trying to get help for her things that have worked, that you’re like, “Thank goodness that that worked that way”?

Diana: I think having some background in this area was extremely helpful. Not that it helped me deal with her necessarily better but I knew people and I knew therapists, and I already had therapists that I had worked with that I knew had done an amazing job or did good work and put some really challenging kiddos. I felt like I’m very lucky that I was able to handpick because finding a fit is a huge part and you can have a talented therapist and a person who’s willing to do therapy and have that not been a fit. I feel like that’s been a blessing and that has really worked well like being able to find providers, and I feel like one of the things that was working well and I’ve changed my tack duck on it, but I first was thinking when she had that I want to say break down that I would share that with people because I have felt strongly I have to be part of reducing stigma. Now I am completely backtracking from that because in order to reduce stigma you sometimes need a community or a society that’s more educated and more well informed, which is why when you ask to what I talk to him what would I say because this is not mine to tell necessarily. It’s my daughter’s and she doesn’t want it shared and now I can kind of see why because people don’t understand, and they sell her short or sell us short or feel like, “We might be wrong in some way”.

Tammy: Absolutely.

Diana: It’s- it’s very challenging, and so that is something that has worked well too is my daughter. My daughter is a fighter and so having her has worked well.

Tammy: Sounds like she’s awesome?

Diana: She is.

Tammy: I think that sometimes really hard is when the world doesn’t get to see how awesome our kids are because maybe they can’t get out the door, or maybe you’re seeing a different side. You’re not seeing the true person, you’re seeing the illness or you’re not seeing anything. I think that’s the one thing we can say is, “Our kids are awesome – we get to yell that”.

Diana: And I recorded her too, often with me having fun, and she will tell me to stop or tease me, but I say “No”, I’m like, “This is you” and later she’ll ask for my phone and she’ll look at those videos and I want her to remember.” This is you too –  on the couch having a bad day, that’s not all you are – you are everybody you’ve ever been”.

Tammy: I like that. I like that one. So, right now because as we said it changes moment to moment to moment, in this moment do you feel like you’re swimming, drowning, treading water, how are you right now in this journey?

Diana: Right now I would say I’m treading water at best but that’s really me. I don’t know that my daughter has changed that much. I think that a couple of things maybe for me and my ability to just be copacetic has changed and maybe that’s just the ability to have long-standing care. It’s a lot different – my energy level now, than it was a couple of years ago. My daughter might be exactly the same but I might worry incessantly one day and be completely okay the next. I feel like I can’t leave her one day and feel like she’ll be fine the next.

Tammy: Let’s talk about that because I feel like we don’t honor enough that we too are human beings with emotional lives. Sometimes when you’re so busy taking care of a child who has emotional struggles, we’re so busy trying to help them with their emotions that we don’t allow us, ourselves,  you know what I mean? Like we’re just, “Okay, I’ll take care of myself later. I’m just taking care of your emotions”. It’s some days I can deal with my son’s issues on some days they really get to me, and he might be exactly the same both days.

Diana: Yeah, one hundred percent, I think that one thing that’s important is getting some sort of therapy and care for your own self and self-care, and I have neglected that a little bit. I have done it and not done it over the years but–

Tammy: You’re not alone there.

[laughter]

Diana: But that is definitely something that I would recommend because you heal some, just being able to share things that it would not be productive to share with your family because it escalates some situations.

Tammy: Absolutely. You also said something that worked well for you that our listeners who may not have the benefit of being in a profession where they feel like they have that network, they can still network. Like through support groups, through the advocacy networks that you can create a network where you know people in the field. That’s very helpful to have that, and so that’s something to think about because I know if you don’t have that you’re like, “well where do I go?” but you can start trying to build that network of other families who’ve been through it, talk to their providers and get to know who’s out there, and who’s doing what. I don’t know if you agree with that or not? It just seems like you’re right knowing lots of people in this realm to be really helpful.

Diana: Yes, and I think that even if you don’t know anybody in most areas, there is NAMI or something along those lines that has a support group for family members and those can be so beneficial on so many levels. Not only are you feeling less isolated because you have somebody who shares your experiences and that can just feel affirming, but then you also have people who have tried 14 therapists and found one who is good, and that is a huge resource. So, I would strongly encourage that and have done that myself and it is something that I think we all need and deserve is to not feel alone.

Tammy: Absolutely because no one in this situation is alone.

Diana: But you can feel very much like that.

Tammy: It feels like it but when you look at the numbers it’s so common, which is so sad that we’re feeling alone when we’re surrounded by others who are feeling alone in the same reality. So, what is your self-care routine or more appropriate survival technique? What do you do to take care of you when things are getting rough. You mentioned some things that like yoga I can imagine really helps, like what do you do?

Diana: Yes. Well, I try to keep a good balance of things in my life and I actually was doing some volunteering things in the community. I’ve had to back away from that and again, those are things that can ebb and flow. Right now where my daughter is I’m not able to do that, but when you help you heal and you’re not so directed inwardly on my own issues and my own thing, and if you’re being of service to others, I think that it’s therapeutic. In my experience, it has been hugely therapeutic. It gets you outside of your own head and you’re doing something productive and you can feel good about that. So, that that has been and I’m sure it will be again and I enjoy doing that. Yoga, yes absolutely. I can tell sometimes if I started my day with yoga because when things come at me I react a little more even keeled.

Sometimes it is just indulging a little. I was in a ridiculously complex and challenging life space in right around between Thanksgiving and winter break, and the therapist that I was chatting with said, “What are you doing for your own self?” I said, “Well, this morning I had a fudge brownie and layered peanut butter on it, and I just enjoyed every morsel of that brownie. I just took that moment and really picking up on some of the things that are shared as part of strategies and coping strategies, and those kinds of supports, for people with mental health is also really good for us as well. Mindfulness is something that I would encourage everybody to look into because you can pull yourself out of a vortex that you might be slipping into because of your situation which is very real, but it doesn’t benefit anybody to just kind of lean into it or wallow.

Tammy: Absolutely, and that fudge brownie was real too?

Diana: Yes,

Tammy: So, it was okay to be with the fudge brownie for a while.

Diana: I was happy  – maybe bad for the hips but good for the soul.

Tammy: Absolutely, I love that. So, what’s your most laughable moment. Sometimes if we didn’t have laughter it’d be a lot harder to get through this. What makes you laugh about when you think of this journey?

Diana: I think one thing that was a laughable moment that is not necessarily laughable now, actually I guess it is. I didn’t realize that my daughter had started to self-medicate and that was tough because I felt like maybe there’s one thing we didn’t have going wrong. Surprise! So, when I first experienced that and she was under the influence and it actually led to a discourse that wouldn’t have probably otherwise have happened. I remember at one point things were very escalated on her end and she was yelling at me, and she said, “Why aren’t you yelling back? Why aren’t you fighting? You almost look like you’re smiling. What’s wrong with you?” and I said, “I’m just happy we’re finally talking”.

Tammy: [laughter] I love it. I bet that annoyed her though.

Diana: Well, right then, to be fair, that wasn’t out of the ordinary. It was actually that better out than in. Sometimes I think parents protect our children, and keep in mind that our children try to protect us, and they did. They perceive things as being good and bad even when we try and direct them not to, they don’t want us to necessarily see dark ugly things, and you need to, like I need to know that’s there because we can’t address it or fix it or get to the root, and pull it if I don’t ever even know.

Tammy: Thanks for saying that. I don’t think that’s something we’ve discussed yet and any of these podcasts but is so important, our kids do try to protect us. They don’t want us to know all the horrible things that are happening inside their heads and that they struggling what.

Diana: And that’s dangerous.

Tammy: It’s very dangerous.

Diana: And I can see not wanting people to know, and I’m sure it’s very vulnerable but you have to be able to let that out and give that some space too.

Tammy: Thank you so much for talking to us. I really appreciate it – you sharing your story with us.

Diana: Thank you.

[music background]

Tammy:  You have been listening to the Just Ask Mom series, part of the mothers on the frontline podcast. Copyrighted in 2018. Today’s podcast host was Tammy Nyden. The music is “Olde English” written, performed and recorded by Flame Emoji. For more podcasts in this and other series relating to children’s mental health go to mothersonthefrontline.com or subscribe to Mothers On The Frontline on iTunes, Android, Google Play, Stitcher or Spotify. Mothers On The Frontline is a non-profit 501(c)(3) organization that uses storytelling for caregiver healing and children’s mental health advocacy. We strive to reduce stigma, educate the public and influence positive policy change through our podcast series and storytelling workshops. We are currently working with Grinnell College to document and archive stories of lived experience with a school the Prison Pipeline, an issue importantly connected to children’s mental health and well-being. If you would like to support our work please visit our website and make a tax-deductible donation at mothersonthefrontline.com.

[music]

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Bipolar in the teen years and beyond in rural Iowa, Just Ask Mom episode 18

logo: purple lotus flower with white figure inside holding arms up on black background

Jill discusses caring for her son whose bipolar disorder surfaced during the teen years. She describes the lack of resources in rural Iowa, the criminalization of mental illness and how that affected her family. She explains how this journey as a mother makes you learn who you are as a person and how strong you can be.

Transcription

[music]

Female Voice: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers On The Frontline production. Today we will listen to Jill, a mother from Iowa, share her story about raising a son with bipolar disorder.

Tammy: Thank you for doing this. We really appreciate you being here.

Jill: Absolutely.

Tammy: Before we get into a lot of the content could you tell us a little bit about yourself before or outside of mothering, who are you? What are your passions? What are you interested in?

Jill: It’s a great question. Well, first of all, I think I’ve known since I was five years old, probably or even before that I wanted to be a teacher. My grandmother was a teacher, my aunt was a teacher. I would have to say that was my focus through high school. I went to college, I’m a teacher and I’m very passionate about it, very passionate about early childhood education. I currently decided to personally take a step back and decided to work on my Master’s degree.

Tammy: Wonderful.

Jill: Yeah, between doing that and teaching full-time and having two children, let’s say two teenagers at home. [laughs]

Tammy: You’re busy.

Jill: It’s busy. When I have a free second to breath and if I’m not writing the research paper or discussion thread I am spending time with my family and friends. That’s very important to me. I like to exercise, I love to be outside in the summer in my flower garden. That’s kind of me by myself.

Tammy: So you knew early on what you wanted to do?

Jill: I did and I think that doesn’t happen a lot.

Tammy: No.

Jill: I I think a lot of children these days are just full of pressure. “I don’t know what I want to do. I don’t know what I want to do”, and I just tell my boys I hope it’s just a lucky one. So, 20-some years I’ve been in it and I don’t ever see myself do anything else.

Tammy: Oh, that’s wonderful. You love it, that’s great.

Jill: I do, yes.

Tammy: It’s a gift when your passion can become your work.

Jill: Yes, absolutely.

Tammy: Absolutely. I want you to pretend that you’re talking to other parents. What do you want them to know about your experience as raising a child with a mental health condition? What would you want them to know?

Jill: I would say number one, trust your instincts. If you see something maybe that is out of character for your child, maybe something that differs from what they have “typically”, how they’ve been acting. I guess just picking up on those little cues. I look back over the journey with my son it’s been three years. Three years and three years now has gone by and I look back at some of the things and say. “Wow, I wish I would have been– went with my gut more than I did”. Does that make sense?

Tammy: It does. Now with your son, was there a clear before-and-after of an onset of symptoms, did it sort of come on at a certain point in his life or did you always see it his whole life, or?

Jill: No. We did not see it early on in life at all. There was no signs or symptoms at all. Probably started seeing it at the age of 15, his hormones were really coming on. When we first started seeing signs like I said looking back impulsive behaviors and things that typically hadn’t been characteristic of my son, but because some of it we kind of blamed on, “Oh, he’s a teenager. Oh, he’s sowing his oats, he’s doing this”, but then he would be fine for a while. Then well, we’d have another as well, I say now an episode of just uncharacteristically behaviors. I should have went with my gut more than I did but I did try to get some help right away, but that was difficult and that probably will come next.

Tammy: Yeah, tell me about that because let me just go back to one thing.

Jill: Yes, please do.

Tammy: You’re bringing up a really important issue because when you’re dealing with children’s mental health, there’s a whole gamut. Some kids have things from very young like Tourette’s usually comes around to age seven, for instance, but a lot of kids have conditions that surface during the teenage years. That’s when the conditions start to have their first symptoms. As you said it’s hard to know is it just being a teenager or not.

Jill: It completely was because from birth up to that point he had been a straight A student. He had been an austere athlete. He had been the kid that never broke a rule, if there was a line he was going to walk it. That’s why I say trust your instincts because as mothers we know our children better than anyone else in this world. When he was behaving some of these behaviors I’m like, “This is– Okay, I’m not sure. Are we this pushing? Or a teenager–“. Like I said we even went with were there drugs involved because drugs are so rampant in the high schools and things that I was not aware of. I guess maybe naive and I had to open myself up to that and wow, what started were these outbursts, I say outburst because it was the change of behavior. His grades started slipping a little. Socially he started secluding himself from his friends. There would be days maybe even weeks he would just stay at home on the couch and he’d want the curtains closed, and he just wants to watch movies with me. You know, “Okay, well, honey” and his friends would come over and say, “Come on, bud. Let’s go.” Typically before this kind of came on sure he would go. He’d love it, very social kid. Then there’d be times where we get over of laying on the couch. Then we would– he particularly, I remember, got in his car asked could he go to the mall to the nearest city and I said, “Sure, okay”. Called me, got a speeding ticket, was going almost a hundred miles an hour.

Tammy: That’s so dangerous.

Jill: Yes, and this was just a few days after we’d been laying on the couch for a while. Then I got him home and said, “Okay”, had the whole typical teenage speeches, had the whole, “We’re going to take your car”, and then two days later gets another speeding ticket. He was going 95. It was just so mind-blowing because my whole mommy gut, I call that, what’s going, “What is going on”, and so that’s when I’m like, “Okay”. Started in with therapist number one.

Tammy: Talk about that. Why was it hard to get help at first? What was difficult at that time?

Jill: I will be completely honest and people probably don’t want to hear this but I know as a mother I wish somebody would have told me, Iowa is horrible for mental health. I had been born and raised in the state and I will probably live in the state for the rest of my life, but I am highly disappointed with the services and help that we have. From just doing some readings I think we’re one of the worst states in the United States of America.

Tammy: We are. I can feel what you’re saying  – because if I hear what you’re saying  –  this is where I’m at –  me– I don’t want read this in –  but I love Iowa. There’s so many wonderful things about our state but this is so disappointing.

Jill: It is. It’s – it’s heartbreaking.

Tammy: It’s heartbreaking, yeah.

Jill: It’s sad and the first thing I did was say, “Okay, I need a professional” because I am a teacher. I am not a doctor. I just told my son, “Hey, I think we need to talk to somebody to figure out what’s going” because he was talking to me but not really. I think he was not sure, I think, what was even going on with himself. That’s where I was like, “Is this his hormones? Is this puberty has set in?”. He has a later birthday so he is a younger one for his class. I went and got a therapist number one, I say because it’s a long…. So went and he just– it was very difficult. He wouldn’t open up. That’s what we tried first. Then, unfortunately, he attempted suicide.

Tammy: I’m sorry.

Jill: Oh, yeah. It was hard. I can talk about it now because it’s been long enough but I think it was more of a cry for help like I’m stuck in my own body and I’m not sure what’s going on. I came home and he was wanting to sleep, he wasn’t sleeping at night. That was another mommy gut thing where the kid that always slept at night wasn’t sleeping at night. He decided– I saw this package of pills and I’m like– he’s like, “Mom, mom” because just he’s so smart and he’s such a wonderful kid.  And he’s just like, “Mom, I didn’t know what else to do but I took all those Benadryl and I went”. “Excuse me?”. He’s like, “I just can’t do it”. “You can’t do what?”. He’s like, “I can’t not sleep and I can’t, my head is racing. My thoughts are racing”.

Tammy: He’s suffering.

Jill: He’s like, “I just need some rest”. I’m like you know the mother, “Oh, my gosh”. He admitted doing it. We went to the hospital and then they once you go to the hospital with an attempted suicide then, you kind of get a little more help. Unfortunately, we had to go through an episode like that to get a little more help. We moved on to therapist number two which also involved medication. He hadn’t been on any medication until that kind of botched attempted suicide or just attention-getting. I’m not even sure what do we call it now.

Tammy: Clearly he was in deep pain and needed help.

Jill: He did. I think that’s–

Tammy: We take it all so seriously. We need to. Absolutely.

Jill: Yeah, we need to and there was no way, and I wasn’t going to take him to the hospital because his father had said to me, “Well, does he really need to go to a hospital?”. He took several Bendadryl and I think this is a tipping point where he looked at me and said, “I just can’t take it anymore. I need some rest. I need to stop my head from spinning”. I don’t even know because I wish I could– I’m not in his shoes. I didn’t know.

Tammy: How could you?

Jill: How could, how can you?

Tammy: Did the hospitalization was it a relief for him because sometimes it can be really– it can go either way, especially for a teen. It can be such a relief to know there’s a place you can go.

Jill: I think looking back on it because that was three years ago, I think looking back on it, I do think there was some sense of relief but there was also a sense of shame.

Tammy: That’s something we should talk about because that’s something we need to change.

Jill: It is.

Tammy: He’d go to the hospital if he broke his leg, right?

Jill: Yeah.

Tammy: He won’t be ashamed of that.

Jill: Oh, no.

Tammy: Poor kid. He’s ashamed of a health problem that he can’t help.

Jill: Yeah. I think that that was the worst thing is to watch be ashamed and embarrassed. And me was just starting to have my eyes opened. I wasn’t, I had to be strong for him but I had to convey to my 16-year old that this is that we can talk about this. That it’s okay to talk about. They put him in some day treatment. It happened to be during the summer and he went to a hospital in the city is nearest to us during the days for some day treatment. I would drop him off and pick him up. That’s where they wanted to start a medication and he started his first medication. I said first because there’s some things that happened as they change and grow and figuring that out. He responded pretty well to the day treatment. The medication I could say no.

Tammy: It didn’t work, it wasn’t the right one?

Jill: No. That leads into my next thing. Number one was trust your instincts. Number two, be persistent.

Tammy: Yes, because it’s a long journey getting the right med.

Jill: Huge.

Tammy: Something that works for years all of a sudden cannot work, so you’re right. That’s something, a muscle you need to keep throughout your life, right?

Jill: Yes, be persistent.

Tammy: Be persistent.

Jill: There are really so many as we call them, as I say we is– his dad and me – we said there are so many pieces to the puzzle of someone that is suffering from a mental illness. To get the pieces to fit your puzzle to make it look like a nice picture takes time. I remember back when we went to just the scenario, I was explaining when the first time we had the hospital stay and the treatment at the hospital was, be patient, it takes time. You do not want to hear that and I was angry, very angry. No, my son has strep throat I want a medicine that’s going to make him better. No, my son broke his arm I want to cast and in six weeks it’s coming off. My son has a mental illness, I want at least something that can give him some relief.

Tammy: Now.

Jill: Now. Tell me in six weeks it’s going to be better. They can’t.

Tammy: They can’t.

Jill: Nobody can until you try it. Well, we tried this medication and give it six to eight weeks. Whoa. It was causing I would almost say his– my son is recently officially been diagnosed as bipolar, so now we know. It’s been a long few years but I would say the first medication he was on brought on more the manic.

Tammy: Oh, yeah, that can happen too.

Jill: It can and we did not know that but it was more manic and more just random behaviors that were unlike him. Finally, when I say be persistent, I went and I said, “No, we can’t do this. This is not working for my son”. Then we changed to medicine number two, try that six to eight weeks, you have to make sure it works. I’m honestly not even sure. At one point I kept a list of medications that we’ve tried.

Tammy: Keep those lists, those are really important, yeah.

Jill: I do. I have the list and I try to update it as much as possible when they change him. This probably now currently, the stories I was telling you and he was 15 going on 16, my son is now recently turned 19. He’s been on the same medication regimen, main medication regimen for almost a year or a little more of year.

Tammy: It’s working well?

Jill:  It’s working well, he’s responded well.

Tammy: Oh, that’s wonderful.

Jill: We’ve recently had a little bit of a breakdown but we added something that kind of is just so I would say be persistent.

Tammy: Being persistent, that’s really important. One thing just from my own experience that I’ve learned that I didn’t know because I agree with you, it’s impossible as a mom to be patient. You want your kid better now. Sometimes medications that fail, as horrible is that is, that information helps with the diagnosis later. That helps them figure out, “Oh, that’s what’s going on”. That journey is really hard to go through but all that ends up being helpful to figure out what’s going on. It ,ay take a few years but I think it’s helpful when you’re in it to know that. That this may seem like it’s awful right now but this may be giving my child’s psychiatrist great information a year from now that he’ll know what’s going on.

Jill: Document it. This did not work for us.

Tammy: Exactly.

Jill: That’s like I said trust your instincts, go with your gut, be persistent. Those are two main things that now looking back I wish someone would have said to me.

 

Tammy: Yeah, because you have a wisdom as a mom. Our society doesn’t always give us the feedback of how that is so worth, what that’s worth, which is so important. I think that’s great advice.

Jill: Yeah, and I think it’s okay to feel every single emotion in the universe because there were times where you’re just so angry that you can’t control the anger within yourself or at maybe it was directed at someone because you thought they didn’t do enough or you just cry, or why did this happen, or you feel so sad for your child because they’re suffering, not suffering but just they are.

Tammy: They are though.

Jill: I guess it’s suffering it’s– and he’s at that age is, if they can describe it –no- they’re trying. My son, his experience was all of a sudden this hit us at this certain point in life. Well, I’ve never– he never known what this feeling was and so yeah, that’s tricky.

Tammy: You said something I want to follow up on if it’s okay?

Jill: Yeah, absolutely.

Tammy: Because I think it’s another very common experience for us mothers and caregivers that you had to hold your emotions together when your son was going through this. Let’s be honest, we have a whole lot of emotions watching our kids go through this. You’re right, we have to sort of put them on hold. How did you take care of you when that or come back to processing that, and I say this not like because I don’t know how I figure it out either. I don’t know that I’m doing it. I think it’s something we need to talk about as caregivers and as mothers because it’s a very emotional journey we’re on but we don’t often have time to attend to our emotions because we’re literally constantly helping our kid navigate theirs.

Jill: Yeah, and I think it’s important to yourself as a mother. We as mothers stay strong for them because we feel like we are that constant. I feel like I am my son’s strength when he cannot be strong. I have to be strong and not waver and almost like I compare it to an outside of body experience. Okay, I’m going to put me over in the corner for now and this stoic, non-emotional machine that has his mom’s face on it is going to be her. Because right there I’m over in the corner because if I was here I would be a blubbering emotional mm-mm.

Tammy: That’s a great description. I’m sure a lot of our listeners  – I know I can relate to that, that just sounds so familiar to me.

Jill: And to myself. I get back in– my son had the worst, excuse me but, he had a really bad episode at Christmas. One of the many therapists that he had been to which we thought we had gotten a good one, and they’ve been going for about a year, decided that it was okay that maybe he didn’t need to take any medication because we hadn’t had a clear diagnosis. Okay, all right, well, he’d been doing so good and graduated high school, got himself a full-time job, had his own apartment. Then she said, “Let’s just try without”. Of course, my son being a man doesn’t want to have to rely on medication, “Sure, if a doctor tells me I don’t have to, it doesn’t have to”. Long story short, six weeks later manic episode to the full-blown worst episode I have ever seen and he’s 18 years old. I had to pull myself together and I found my own strength that I never thought I had, ever thought I had.

Tammy: You have to be fierce for this job.

Jill: Fierce is a very good word. Fierce, strong, whatever you need to do to get through it. I would say I have learned more about myself. I am 44 years old and I probably know myself better than I have in my entire life.

Tammy: This will do that to you, won’t it?

Jill: It will.

Tammy: It really will.

Jill: And that’s good. It’s okay but I thought I knew myself. I didn’t know myself. I didn’t know the strength that I had as a mother. I think that’s good but how do– I guess going back to your original question, I’m sorry, but how do you how do you take care of yourself? Well, after you get your son settled in the hospital or the care facility or home, wherever they end up being, I went back to the corner and I picked myself up, took my shell off. In the privacy of my own time, in my own place, I felt those emotions. You have to feel them at some point, you can’t bottle them out.

Tammy: They’ll come back to haunt you if you try.

Jill: You will have some major– you need to talk to a professional. You can talk to a relative, a friend. If you are spiritual, talk to your spiritual leader. Do something that you can get those emotions because you’ve got to feel them, you have to feel them.

Tammy: This is where support groups and things like that can also be really useful as well.

Jill: Support groups, absolutely, find someone in your support group because I’m telling you we if as mothers as parents out there, even if you’re not a mother or a father or just a caregiver, you need a go-to person or you need a go-to way to let those emotions go.

Tammy: Yeah,

Jill: Because I know we all as caregivers want to be strong and yes, but you have to remember to deal with your own personal.

Tammy: Absolutely.

Jill: You do.

Tammy: Thank you for that. I think that’s something we need to hear and remember.

Jill: Yeah.

Tammy: So, this is a lot but I’m wondering if you can think back in the past three years about something that has been a barrier to getting help you’ve talked about some of the challenges with finding the right medication and so forth. Has there been something that’s been a barrier or you tried that didn’t work or that you wish would have been different? You wish should be different for people going forward that you experienced?

Jill: I think you all those things you mentioned were barriers. I’m just finding the right fit but I do think I’m going to go back to it a barrier is where I live.

Tammy: Hmm,

Jill:  Not only the state of Iowa that I live in but the county that I live in and my state of Iowa, very limited resources.

Tammy: Hmm,

Jill: We do not have a hospital in the county I live in. So, when I want to– I’ve committed my son twice when I did the committal there wasn’t  a county that had no hospital. So, took him to the county over where the big city is and they kicked me out because they didn’t have to treat my son because he’s not their problem.

Tammy: Really?

Jill: Mm-hmm. because we’re not residents of their county.

Tammy: I don’t realize that they could do that.

Jill: Tell me how, tell me how inhumane that is….

Tammy: Absolutely.

Jill: Inhumane.

Tammy: Absolutely.

Jill: As an educated woman, I consider myself an educated woman. I did not allow that to happen. This last time.

Tammy: Right.

Jill:  I stuck my heels in and said, oh no, my son needs to be treated well. “Well, we have this many people in our county that we don’t have beds for, we don’t have room for.” Wow.

Tammy: That’s shocking because it’s just and that’s something to check on I think. It just doesn’t sound like it could be legal. But we run into these things all the time that seems. like could this happen?

Jill: How could it happen?

Tammy: How could it happen?

Jill: How could it be legal? Exactly. I talked to some of the nurses from this hospital and said I don’t understand it like we have to send him back. We cannot keep him.

Tammy: Mm-hmm.

Jill: So, they gave them some a shot in the leg and said here you go.

Tammy: Yeah,

Jill: Back to your county. What? You have got to be kidding me.

Tammy: So just a lack of resources.

Jill: It’s yes. And I’m going to tell you the story.

Tammy: Yeah,

Jill: It’s very personal as well, but it’s very real in my life when my son went through the episode this Christmas where his doctor took them off his medication and we were in the full-blown manic episode. I could not get my son to get in the car and go to the hospital with me in the nearest town. Could not. He was so far gone mentally that he couldn’t. He still had his automobile, he’s still on his apartment and still had all his freedom. And I was scared for his life. Somehow, some way they found his car abandoned in the middle of the street. And he was knocking on people’s doors at 6:00 in the morning confused. So, they brought him into the police and he was put in jail.

Tammy: Instead of taken to the hospital?

Jill: Uh-hmm, My son was put in jail and charged with public intoxication. So they called me and said, ‘Ma’am we have your son’. We think he’s high on meth.

Tammy: He was manic?

Jill: Yes,

Tammy: That’s what I’m hearing.

[laughter]

Jill: A long pause because there were flames. Those emotions–

Tammy: Right.

Jill: There were flames coming out of my ears and I’m like. “Sir, please any, any drug test you’d like to give him. I’d like for you too because my son is in a full-blown manic episode.” “I just think he needs to sober up, we’ll keep him overnight.”

Tammy: Even after you told them this?

Jill: Yes, even after I told them so. I said alright. Because I honestly want to get my son out and if you’re keeping him right here I’m calling around, I’m going to start trying to find a spot. But why don’t you go ahead, and run a drug test, do whatever you need to do, have him “sober up”? I got a phone call by 8:00 am the next morning.  “Yeah, no, there’s no drugs in his system. He’s not– Yeah. I’m sorry ma’am. He needs some medical attention.” I go “he’s needs some medical attention as soon as possible. Let’s get on it.” Well, that was December 28, my son sat in jail until January 2nd. I had to file papers to get him committed. I had to go to the judge and beg and plead to get him some help.

Tammy: Because they were saying this is criminal activity as opposed to a symptom.

Jill: Thank you. Yes.

Tammy: For an illness that he clearly had?

Jill: Yes and had history. This was just six months ago. He’s had this basically three years and so, I was persistent and did not give up. And I said how, “how is this? how is this okay to keep my son locked up in a jail cell? He’s done no criminal activity.”

Tammy: Right.

Jill: They were like, “we don’t know what to do with him.” They told me, “we don’t know what to do with him. We have nowhere to take him.” That is what’s wrong with mental health.

Tammy: So, in this case, having an access center in your county, having training, CIT training, crisis intervention training among the police. These would have made a huge–

Jill: Huge

Tammy: –difference for your son and for your family. Not to mention for your community who is probably a lot of your neighbors or whoever were frightened.

Jill: Yes.

Tammy: And luckily no one was hurt, it sounds like.

Jill: No, absolutely no.

Tammy: But he could have.

Jill: Oh he could have

Tammy: Got himself into a car accident.

Jill: Yes. And hurt himself or someone else.

Tammy: And hurt himself. So those are just some little examples.

Jill: Mm-hmm.

Tammy: So this is a great example of how resources make such a difference.

Jill: They do. And I was persistant and I stayed strong and said I will do whatever it takes. The judges in my county were amazing. The police officers in my county were amazing gave me their home phone numbers and set–

Tammy: It’s wonderful.

Jill: I had probably the best support in a horrible situation I did, but I was persistent. And I do live in a smaller community, but I still think that those judges didn’t have to do that.

Tammy: Right.

Jill: But I will never ever forget the judge’s comment to me. He said, “Jill, your son does not deserve this treatment. I’m sorry, he has done nothing wrong.”

Tammy: I’m so glad you got to hear that

Jill: And I said, “thank you. You know who needs to hear that?”

Tammy:  Your son.

Jill: “It’s my son.”

Tammy: Did he tell him?

Jill:  Later after he got–

Tammy:  Well enough.

Jill: –well.

Tammy:  To hear…

Jill: He did. He said in the courtroom.

Tammy: I am glad you got ’cause some of these families never get that.

Jill: No, I couldn’t believe it. And I lost it emotionally. My stoic face left as fast as it could.  I just cried then. I was on the phone and I remember. Thank you so much. I said I know he does not but this is the problem. And he goes this this the problem, Jill, because I can’t send him home to you, I don’t think he’s safe. I said he’s not. I think he’d hurt me or his brother no. But he’d wander off.

Tammy: Right

Jill: And physically, I can’t keep– He’s bigger than me.

Tammy: Right.

Jill: You know this and I might– And he said so we’re going to keep him here but we’re going to I’m going to get an emergency order. Order him up there to see an ER doctor.

Tammy:  I’m glad you had that. Because then he got the help.

Jill: Yes.

Tammy: Now he’s doing much better.

Jill: Yes. Thank you. He had to stay on in the hospital in this psychiatric wing at the hospital for ten days. I was very worried he wasn’t going to come around. I went every day, I called every day on my lunch break from work and then I went up every day for a certain– you only get a two-hour time window. I went up every night still wasn’t coming back to me. But he knew who I was.

Tammy: Right

Jill: But we were still having some very delusional thoughts but finally they started him back on the medication that the doctor had taken him off. They, they uped it because obviously, they needed, they wanted to get it in his system faster. Then on the way home one night, his doctor that was treating him at the hospital called me and said, “Yeah I don’t think this by itself is working. Can I add a mood stabilizer?” I go, “sure.” We had tried that another time and it had worked for a while but we took him off focus he gained so much weight.

Tammy: Hmm,

Jill: Because there are so many factors medication and weight and other things that it affects.

Tammy: Right

Jill:  And within 48 hours I have my son back. I went up to visit him and he’s like, “Mom” and just tears of joy. I was so happy to have him back. So then they let him go a day or two later so. He’s healthy.

Tammy: That’s wonderful. So, you’ve actually already answered the next question–

Jill: Okay.

Tammy:  –which is what has worked. But if there’s something else you want to mention.

Jill: Yes…

Tammy: –something that you wanna say this works please keep this.

[laughter]

Jill: Yes.

Tammy: –keep making sure this happens for other people.

Jill: You know I just you know had I had really good luck with some really great people that were compassionate and understanding. And I think also most of the adults that I had interaction with were saddened too at the situation that they felt helpless because they wanted to help me but they couldn’t.

Tammy: Hmm,

Jill: So I think that was something. What else has worked well? Just be you know to be the best advocate for your child. You know our mental health system in the state of Iowa that I live in needs work but be an advocate for your child. You’re the person that knows your child more than anybody else in the world. So say to them you know this is what I’ve seen, this doesn’t work. This is what I need. This is what my child needs. And you know what. Even if your child is old enough, my son is old enough to say hey this makes this is working for me.

Tammy: Yes

Jill: Or this isn’t working for me. Don’t not say what you want to say. This is not something you can just say, “Ok, not a sore throat. Let’s try this and see if it works.” Something much bigger than that. And so yeah, I’m kind of outspoken sometimes

Tammy: That’s a good trait to have when you’re dealing with this. [laughter]

Jill: It is, and you don’t have to be. You don’t have to be outspoken and boisterous kinda like I am, but you need to at least say what you’re feeling. Advocate for what you think. Advocate for what you think your child needs.

Tammy:  Right

Jill: Don’t hold back.

Tammy: Right

Jill: Just don’t, because you don’t want anything to end or end up in a situation that you could have avoided.

Tammy: I think that’s really good advice.

Jill: You know.

Tammy: So, we like to ask these next three questions–

Jill: Yeah

Tammy: –each time. First of all, we recognize that this journey is constantly changing where we’re at. So just at this moment where do you feel? Do you feel like you’re swimming, drowning, or treading water?

Jill: I had to think about this question I have to really think about that but my first response really is were swimming right now. I know I just came off the story of what happened to six months ago.  But honest to goodness, six months later where I’m sitting on this day in the month of June, we are swimming.

Tammy: Good

Jill:  His treatment plan is working. He is following his treatment plan. He is doing what he needs to do. And as of most recently he looked me in the eye and said, “Mom I don’t ever want to feel that way again”. He was old enough maybe to understand. He doesn’t remember the whole episode and they say sometimes you don’t get full memory of it.

Tammy: Right

Jill: And maybe that’s a blessing because some of the things he was saying, that came out of his mouth. Maybe it’s not characteristic of him. Typically, when he is on a basing in level. But I’d say for the most part, we’re swimming, or moving forward he’s doing, like I said ,his treatment plan and he’s also he’s back to work. He’s back to smiling. He’s back to laughing. Me? As for me. It’s not it’s about me but–

Tammy: No, this question is about you.

Jill: [laughter] Yeah true. It is about me. Yeah, Yes. I’m swimming, I’m swimming. I feel good. I feel good. I feel good because I feel that I did everything I could. We got, in the end, it was a hard a hard thing to get even the last six months. I’m not even talking about the last three years of my life but in the last six months, I feel like boom, did it! You know we’re here and I’m able to kind of just and I don’t go to work and I worry about my phone ringing or I don’t go to work and think, oh I hope he gets up. I mean out of bed and gets going. I’m swimming because I know that’s all happening.

Tammy: Yes

Jill:  I’m saying he’s swimming because I see it

Tammy: Don’t you love boring days.

Jill:  I love boring days.

[laughter]

Jill: I love a boring day.

[laughter]

Tammy: They’re the joy of my life.

[laughter]

Jill: Yes.

[laughter]

Tammy: Days you not in panic mode –

Jill: Yes.

Tammy: – are so awesome.

[laughter]

Jill: Those are so awesome and so when they’re there, take them for every minute of that day because yeah.

Tammy: I agree.

Jill:  Because it could change next week.

Tammy: Exactly

Jill: My mantra has been when someone asks me a question like are you treading water, drowning, or swimming. I’m consciously optimistic.

Tammy: Right

Jill:  But we are swimming.

Tammy: Yeah.

Jill: Because in six months something can happen.

Tammy: That’s right.

Jill: But I try to look at it as six months. If my son wasn’t suffering or having this mental health issue there be something that would come up in his life anyway.

Tammy:  Absolutely

Jill:  I have a younger son who is recently turned 16. He has shown no signs or symptoms. But you know a bump in his road is, “Ugh,I did not want to get up to an ACT test”.

[laughter]

Tammy:  Oh, no.

[Inaudible]

Jill: Or having a bad day or his girlfriend broke up with him.

Tammy: Sure.

Jill: So he’s sad. You know, I mean where my other son who’s 19. It could be, “Oh, I haven’t taken my medicine for a week” or all of a sudden becomes depressive and won’t get out the bed. I mean there’s just aaah!

[laughter]

Tammy: But the truth is, life, in general, is unpredictable.

Jill: It is.

Tammy: One positive thing of going through this difficult experience is I think you become flexible to deal with that.

Jill: Totally. You are right.

 

Tammy: Because you have to, right.

Jill: There’s no other option.

Tammy: There is no other option

[laughter]

Jill: No other option. No other option

Tammy: So, what is your self-care routine. Or as I like to say sometimes it might even be a survival technique.

Jill: Yeah

Tammy: Like how do you take care of you.

Jill: Well I think my number 1 thing has been over the last three years my journey with my son and being his caregiver is to talk openly about it.

Tammy: Uh-hmm.

Jill:  Don’t hold it back. I think at first, I kind held a little bit back because I wasn’t sure you know who really to talk to and who wouldn’t be like– I know there are stigmas and there’s judgments and when I gave birth 19 years ago, did I think that my son would end up having a mental illness? No. But it’s what. It’s just life, you know.

Tammy: Uh-hmm.

Jill:  And so, it’s not. You shouldn’t be ashamed of it.

Tammy: That’s Right.

Jill: You shouldn’t feel like someone’s looking at you like what did you do, what kind of parent are you. It’s no. It’s an illness like, you know I have a friend who is diabetic just recently.

Tammy: Right

Jill: So, she has to treat that the rest of her life otherwise she can get really sick and die.

Tammy: Exactly.

Jill: So, I’ve tried to compare that with my son’s illness. He has to treat it and stay on top of his treatment plan. Otherwise, things can happen.

Tammy: That’s right.

Jill: It’s like an illness like– I know for a fact he’s going to live a long and fruitful life and amazing things are going to come his way. And I think he’s starting to believe that.

Tammy: Good.

Jill: And I think that I think I just– I try not to think too far advance, but I think it’s good to be open and talk about it.

Tammy: Absolutely.

Jill: I do. I think that’s important. I just also try to take time for myself. You know just me when I feel like I’m an empty vessel or I’m a last jar and I’m empty. I need to just take some time. Honestly, even if it’s for a couple of hours and just go for a walk by myself.

Tammy: Um-hmm.

Jill: I took up yoga. Just go–

Tammy: That’s great.

Jill: –and do some yoga poses. I’ve been considering meditation because I’ve heard it’s wonderful. Just you, just me being with me. And like I said earlier at this age who knew I didn’t know myself.

Tammy: Um-hmm.

Jill:   And I think self-care, with that you find out who you are.

Tammy: Yeah.

Jill: If really you say, “Wow, I think I’m an okay person.”

Tammy:  It’s like, oh she’s pretty awesome.

Jill: I might hang out with myself, If I–

[laughter]

Tammy: I think I should hang out with her. Exactly. I love that.

Jill:  Yeah,

Tammy: I love that.

 

Jill: Yeah. So

Tammy: So, here’s the last question we end on. I think any mother can give you a laughable moment.

[laughter]

Jill: Yes

Tammy:  So, what is your most laughable moment?

Jill: Oh jeez.

Tammy: What makes you smile when you look back and think oh my goodness.

[laughter]

Jill: I don’t know. And this is hard because– Ok, so laughable moment as in myself and my son’s mental illness and dealing with that . What’s the most laughable moments with that?

Tammy:  It can be. Yeah.

Jill:  Well honestly, it was as of recently. I can laugh now. I think it’s what that’s kind of the question you’re asking me.

Tammy: Sure

Jill:  What’s a moment that you can laugh at now. Well or that’s how I’m reading it.

[laughter]

Tammy:  It’s however you want to interpret the question but just something makes you sort of laugh like oh that was funny. [laughter]

Jill: It was and it was it’s so funny now but– So, when my son was committed to the hospital to get medication back and get him stable and able to function, I would go up every night and you can’t take anything in with you. You know it’s just me and my younger son couldn’t go because he wasn’t old enough and whatever. So it go in and oh my goodness, every day he’d see me, he recognizes me but he would talk about all his brothers and sisters and all these babies that I had.

[laughter]

Jill:  Just things and then the craziest part  – there was a lady that was my age. Very nice. And she would lecture me every night about my skincare because [laughter]  I’m naturally kind of dark complected anyway so, “Do you use a tanning bed. My husband is a dermatologist and she would just over and over…

[laughter]

Jill:  And then she– Jake would put lotion on my skin. And looking back on that one. Well, Ok.

[laughter]

Tammy: Right.

Jill: I have to laugh now but it was because I knew he was there and he was getting the care he needed.

Tammy: Right

Jill:  He was safe,he was clean. He was getting the medication but not all the chemicals in his brain were clearly working correctly yet. [laughter]

Tammy: Right

Jill: “So, mom remember that brother I had name Zach?” and I’m like, “Oh, okay no honey that’s probably…”  Oh, jeez he does– and he I and would just giggle and we would just–. Oh my goodness.

Tammy: Yeah

Jill:  But anyway.

Tammy: Yeah.

Jill: I don’t know. I have to laugh now.

Tammy: That’s right. Sometimes if you don’t laugh you cry.  Sometimes laughter helps a lot.

[laughter]

Jill: Thank you.

[laughter]

Jill: I would say that. At the time I would leave the hospital and I’d be like, “did that really just happen?” And I’m like, “ok, ok. Get it together.” And that’s where I said I wish- when was he going to come back to me like when? And now that he’s back. And we’re all good. I look back on that moment.[laughter] Did that all really happen? I remember him putting lotion in my hands and you know because you will and you will have the moments that are ingrained your head. Whether it’s good, whether it’s bad, ugly, beautiful. There are those moments. I have all of those and that’s one that I’m just like, oh my god that’s–

[laughter]

Jill: Because you know you have to. You have them all in.

Tammy: That’s right.

Jill:  And it’s just an emotional thing.

Tammy: I want to thank you, Jill, for sharing your story with us.

Jill: Oh, absolutely.

Tammy: It really is wonderful to have you share with us. Thank you

Jill: Good, thank you. Thank you just for letting me tell my story and my son’s story because it’s very therapeutic for me as well.

Tammy: Oh, thank you. I’m glad to hear that.

Jill: Yes, thank you.

[music]

Female Voice: You have been listening to Just Ask Mom copyrighted in 2018 by Mothers On The Frontline. Today’s podcast host was Tammy Nyden. The music is Old English written, performed, and recorded by Flame Emoji. For more podcasts and this and other series relating to children’s mental health go to mothersonthefrontline.com or subscribe to Mothers On The Frontline on iTunes, Android, Google Play or Stitcher.

[end]

 

 

Miss Diva on Raising a Child with Schizoaffective Disorder, Just Ask Mom Podcast Series, episode 16

logo: purple lotus flower with white figure inside holding arms up on black background

In this episode, we listen to Miss Diva from the USA. She speaks about raising a son with schizoaffective disorder, bipolar, ADHD, PTSD, and Seizures in the African-American Community. Please be advised that this interview contains content about domestic abuse and may be upsetting for some audience members.

Transcription

Women’s Voice: Welcome to the “Just Ask Mom” podcast. Where mothers share their experiences of raising children with mental illnesses. Just Ask Mom is a Mothers on the Frontline production. Today we will listen to Ms. Diva from the USA. Please be advised that this interview contains some content about domestic abuse and may be upsetting for some audience members. This interview was recorded at the 2017 National Federation of Families for Children’s Mental Health Conference in Orlando Florida. During this particular recording, you can hear noise in the background from another event in the hotel. Please don’t let these noises distract you from Ms. Diva’s story.

Dionne: I’m sitting here with you and I wanna say thank you very very much…

Miss Diva: You’re welcome.

Dionne: …for agreeing to be a part of our podcast. Can you please introduce yourself?

Diva: My name is Diva and I am called Diva because I have been through so much in my forty-four years on this earth until I feel like there is nothing anybody can do or say to break me anymore. And I feel like you can try but I’m always gonna  come out victorious because the Diva is always going to hustle – get it done for her and her children no matter what. If she has a man or she don’t have a man, she don’t need a man to make it happen. And that’s me.

Dionne: Thank you. Well, tell me Ms. Diva, tell us a little bit about who you are and who you were, what are your passions? Who are you outside of and in addition to being a momma.

Diva: Oh my gosh! First of all, I honestly didn’t wanna become a mom. I was scared that I wasn’t gonna be able to give my children the love that they needed like they were supposed to have. Because when I was a kid I felt like I wasn’t loved passionately enough as a child suppose have been loved by their parent and encouraged enough because my parents didn’t give me that encouragement. They gave my younger sisters that encouragement but as for me, they didn’t do that. But when I had my children I was like, “Wow!”. When I had my first child I was like. “Ohh,hhuuhh!”, you know, like “Oh, No!”. And then had my second child after I am married. And then my third and my fourth. And then I was like, “Oh no, I’m a mom!”. So I was like, “Okay, I gotta step my game up since I’m about ten thousand times more than what they did.”. So my goal was to always let my kids know that: “I love you and there is nothing that you cannot do. I will never stand on the way of your creativity. The word ‘can’t’ and ‘I won’t’ will no longer be in existence for you all.” My kids used to think I was mean because I used to give them books to read. So, they was like, “This is a punishment”. No, it’s not though my kids one of the–it wasn’t. I have been through domestic violence, my kids have seen that. Still legally married to the man. He tried to kill me and my kids. So we are still standing the risk. That’s why I say I’m that diva because I refuse to allow you to dominate my life because if I let you dominate my life, it’s like you still have your hand in my life. “Oh no!”, because I’m going to do what I need to do. I have four children: 24, 18, 16 and 14. I have an 18 year old. He has a bipolar schizoaffective disorder and the alphabet. And once–you know what I mean when I say the alphabet.

Dionne: Yes. The alphabet soup of diagnosis, yes.

Diva: And sometimes he has his good days, sometimes he has his bad days. And it’s like, “Whoa, wait! Hold up!”, and sometimes he wants to listen to me, sometimes he don’t. But he’s at the conference with me. He’s doing good. When we walk past to come here, he was sitting in a class listening paying attention. So it’s like, that was a first.

Dionne: He stopped by our table several times ’cause he likes the candy. [laughter]

Diva: Yes [laughter] Oh it’s like you’re trick or treating huh? [laughter]

Dionne: [laughter] We talked a couple of times.

Diva: Yes, So he’s a friendly young man…

Dionne: Yes he is.

Diva: …but the thing is, I found out he was–he had these diagnosis when he was six. So, being of African-American descent, in our culture we do not talk about mental illness. It’s like the big elephant in the room and if you do something about it, “Oh no, just whoop ’em!”. Whippings do not cure everything. Then it’s the next one–oh I’m going to pray it out, Oh no, pray that God gives me the strength to endure what I’m about to go through. Pray that God gives him a stable mind or me  – so I won’t go crazy and hurt this child. Because there’s a lot of times when they say things that they don’t mean and you feel like it’s directed at you and they’re just taking out their anger. Because when they do it you like, “Oh, did you just lose your mind!” and you be wanna ready to–you be ready to like, “Oh, you know what, it’s battling time. You ‘bout to go in the corner and the fight. Put your gloves on”. So, and I tell my parents all the time, “If God didn’t want them to have the doctors here to help us, he would never had put them in place.”. He will not put the psychiatrist, the therapists, made these people that have the medicines so we can help them. And all the other people, all the little people, like these conferences, to help give us the knowledge of what we can do with – outside of–when everybody else has gone home asleep, what coping skills you can use to help your child, son or daughter, go into–when they enter that poppin’ off mode. So my son–’cause I have two sons. One has ADHD-PTSD and he has suffered from seizures. Then my older son, he’s the one that has the main ones but my younger son, he’s introvert but he’s a smarty. And he just don’t wanna go yet and it’s like I tell my kids, I gave them with the analogy when they were young. I’m the head of the household so I’m the head. My oldest daughter is my right hand. And my son that’s 18, he’s my left hand and my 16-year-old, he’s my right leg and my 14-year-old is my left leg. I say, so if anything happens to one of you guys, my limbs are obsolete to me. So I said I need every last one of you guys to do what you gotta do because if you get hurt, get killed, something happens, my limbs would no longer work the same.

Dionne: Alright, that’s a beautiful analogy.

Diva: And they’d look at me like, “What?”. I said, “come here”. So my son just said, “What?”. I pinched him, he said, “Ouch!”. I said, “That’s how I feel” If something happens to you –  and your my left arm. So if you’re gone, my pain is there. And until you come back in one piece, whole, my pain goes away. And he was like, “Oh, got it!”. I was like, “Thank you.”

Dionne: That’s a wonderful analogy of just how–I don’t think our kids realize how much they are literally, a part of us.

Diva: Yes. yes. And I feel like–I used to tell my son when he was younger when he needed help when he was in school I said, “Baby, look at it this way. I need for you to get your slinky–look at the slinky in your mind. When you had the slinky here at both hand level, you’re fine. Once that slinky starts sliding down, you feel like you need help, you get that help.” I said, “Once that slinky fall all the way down, you’re out of control, you can’t get that help no more.” I said, “Once you get it started moving up and down, you can get the help.” I said, “But once it falls and go all the way across the room, there is no coming back from that. He was like, “Okay, ma.”. So a couple of days ago he said to me, ” Ma, I’m trying to be that slinky.’ And I have the strangest look on my face like, “Okay babe”.

Dionne: He heard you.

Diva: But this analogy was given to him when he was six, seven years old.

Dionne: I know. He heard you. He heard it. That’s awesome.

Diva: And it’s like it’s still there.

Dionne: Yeah!

Diva: And he was like, “Mom, I’m still that slinky.” And I’m like, “Okay love. When you need that help, you tell me.”

Dionne: Yeah

Diva: Because if he hear voices, he tells me.

Dionne: That’s great.

Diva: He’s like, “Ma, they’re talking.” And I’m like, “Okay babe,” because I’m one of those parents, I listen. Because when I was a kid, it was be seen and not heard.

Dionne: I see.

Diva: And I was raised up in the church and, people ask me, “Why don’t you go to church anymore?” Because the people that raised me, I feel like they’re the biggest hypocrites there is. Because you tell me to do as you do, do as you say but not as you do.

Dionne: Right.

Diva: But then the whole entire time, you’ve been lying to me. You’ve been hiding stuff. You’ve been sneaking around! What do you want me to do? How do you want me to take this and God said, “Do not do this,” and you did it! So you want me to feel this way? So, I tell my mom, we were talking about something and I said, “Ma,” and she was just, I had to you know, “Ma!” She was like, “What?” I was like, “Look. For everything that you come at me in the Bible with, we’re going to come back with you on this one right here!” She just said,” Lord.” Yes! So she said, “What?” I said, “The Bible tells you, children obey your parents and the Lord.” And then it comes again, children obey your parents and the Lord, for this is right that that days may be long upon the Earth.” I said, “This is what the scripture your parents hate!” Should parents, “Provoke not your children to wrath!” I said, “Woman, what are you doing to me?” And she said, “Uh, shut up and get off my phone.” I said, “No, you’re provoking me to wrath! I mean, you’re provoking me!” I said, “So, you are not listening to what the Bible say.” I said, “I told you, you that scripture!”

Dionne: So does that translate ever with your kids? What I’m hearing you talk about is, the way in which you want to raise your children differently than the way you were raised.

Diva: Because I have. Like I have a 24-year old. At 20, I had her. She has gone to nursing school, no kids.

Dionne: Go on.

Diva: They told her she was going to be a dropout. She’s going to have a house full of kids and I told them, “Hold up. Don’t put that into my child’s life. We don’t speak that in someone’s child’s life.” Because I always told my children, “Be the best at whatever you do. If you’re going to be the best bum, be the best bum you’re going to be,” and that’s how I’ve always been with my kids. I always told my kids, “Be the best you.”

Dionne: Good.

Diva: Be the best whatever it is you’re going to be. Be the best whomever you’re going to be. Don’t let anybody stop you. Don’t let anybody tell you how far you can dream. Don’t let nobody get in your way. I said, “If you feel like I’m getting in your way, be like Mom, I need you to move!” “I will get out your way!” I said, “But I’m here. I am going to forever be your cheerleader until God takes me away.” Because I tell my kids, “I’m going to push you for the better. I’m not going to push you down. If I see you slip, I’m going to help you pick you up.”

Dionne: So with that in mind, what would you say has been the greatest challenge in you getting help or raising your children around their mental health diagnoses and their mental health challenges?

Diva: Getting the help from the community, knowing where to go in the community that offers the help where we live.

Dionne: Okay.

Diva: And when I found the FIA, it says what it is on the card.

Dionne: Okay.

Diva: I just don’t want to say it because it will say where I’m from.

Dionne: Yes, I see it.

Diva: But Miss Harrison, she’s awesome. She’s been God sent.

Dionne: Good.

Diva: Because like my son was put into a transition  – he got arrested. DHS did nothing. They didn’t even show up. So Miss Tammy was there with me. We went and his attorney said, “Miss Diva, the Judge say, he can go home. Would you take him home today?” “Sure will!” But I’m like, I’m not feeling like I can stay in jail –no.

Dionne: Yeah.

Diva: So, because I learned something when I was growing up, I’ve learned that you’re going to have 10 children. Each one of them have a different personality.

Dionne: That would be true.

Diva: Each one of them have something different to offer, like you have 10 fingers, not one finger look alike. Each nail on your finger, one might be longer than the other. One might does more than the other finger can do because each one of my kids give me a different strength. Like my 18-year old, he really pulled out of me that I can go above and beyond.

Dionne: How does he do that?

Diva: Because he lets me know, “Ma,” with his diagnosis, I go above and beyond to find out where I can go to get more help for him, what’s there for him, what options are there for him because normally, when I was coming up, mental health issues was never talked about.

Dionne: Yeah.

Diva: It was just like, “Get that rug and broom, sweep, sweep, gone.” You never talked about it. So, when I got my kid’s help after fleeing my abusive husband, it’s like me and my kids develop and play.

Dionne: I see.

Diva: My own sisters, biological sisters at that. One, she’s his godmother.” He asked her for a game. Why lie to a child?

Dionne: Like?

Diva: “I have to take care of some bills” “But I’m watching you on Facebook post live pictures going live, posting pictures of you and my other sister in the Bahamas. What? Did you just lie to this child?” And he called me the aunty – huh –  I haven’t talked to her honey.

Dionne: I see.

Diva: So, when you have to lie to your child about somebody else lying, I hate lying to my kids.

Dionne: Yeah.

Diva: That’s one thing me and my kids promised that we wouldn’t have to because I had not lied to my kids about anything that is important to them. Like that kind of lie, I fell like that’s not full lie.

Dionne: Right.

Diva: But it’s still a lie.

Dionne: But in terms of their diagnosis and treatment?

Diva: And then you have to realize, they are more sensitive than the other kids because the other kids can handle it. Their diagnosis, they can’t! Because they’ll be like, “What? They lied to me? They what?”

Dionne: Right.

Diva: They spaz out and go off, do a whole bunch of other stuff.

Dionne: Right.

Diva: It’s like, you would have to tread lightly with their diagnosis.

Dionne: So, what you say in addition to learning how to talk to your children, and you’re doing a wonderful job of —

Diva: Thank you.

Dionne: — just giving them and I mean, your son is one of few people that I met and so, of giving them this sense of confidence and something stable of love.

Diva:  I constantly tell my children, “I love you.” I constantly let them know, “I got your back.”

Dionne: Good.

Diva: I constantly say, “Hey, remember who’s here. She’s here. I need her. I’m here. Because like, right now I’m sick and my youngest is here with me and even though he has his moments, I don’t care what he is going through. You say something is wrong with his Momma, he snapped. “What? You what, what’s going on with my Momma?” He is going to find out what is wrong with his Momma and try to make his way back to his Momma because like one of his siblings was like, “Momma can’t get her shoes on. She is so swollen she can’t even move.”

Dionne: Right.

Diva: So he came upstairs and was like, “Momma, let me in.” I’m like, and I saw my youngest son. I was like, “Open the door for your brother.” So he came in the room and put my shoes on for me.”

Dionne: Oh.

Diva: So when I say my kids have my back just as much as I have theirs, when I think they don’t have my back and I feel like they don’t me pay attention, they do. They pay me a world of attention.

Dionne: That is wonderful!

Diva: And I feel like they don’t but they do.

Dionne: That’s good.

Diva:  Because like my 24 year old. Sometimes I feel like she don’t have my back, but she does.

Dionne: That’s Wonderful. And that’s so important.

Diva: Cause I had asked her, I said, “If anything happens to me,” – she was like, “Ma, you don’t even have to worry about it. Them three – I’m already on it – I already know I got to raise them.”

Dionne: Wow.

Diva: She said, “you ain’t got to write it down, I already know. What my job is. To make sure them three is good.” I said, “You got my back!” She was like, “Oh, no doubt,” she’d say, “you know  even though we argue and fuss, you are my only mama.” She’d say, “You’ve always been there.”

Dionne: Wow.

Diva: So, I’ve always made sure my kids – and always will make sure my kids –  know that I love them, even if I can’t talk – my kids know sign language, so we tell each other “I love you” in sign language. So we like, we go this way and touching your face. Because when he was in court I did this and touched my face  – and he was like …

I used to be a teacher. And when I did Scholastics, I wouldn’t send all of the Scholastics home with the kids. I’d be like oh, I can use this at home. So my kids know a little sign language. I am like, because I told them “it is good to know another language.” And they were like “Sign language? What?” I was like, “What is at the end of that word  – it’s ‘language’ – It is another language.”[laughter]

Dionne: So what is your self-care routine – how do you take care of you?

Diva: Oh, gee. [laughter] I love music. I love going to the gym when I’m not sick. I used to be a size 24, now I’m a size 18.

Dionne: Oh, wow.

Diva: And I started in the gym in January, so when I turn 44 in July, there was a dress that I was trying to get into  [snaps three times – laughter] “Nailed it!” [laughter] So, I have been out of the gym for a month because my Fibromyalgia’s been acting up – but oh she mean – will get back in the gym. But I do talk to – I do have my own therapist, my own shrink. I talk to her because if I don’t take care of me, I can’t take care of them.

Dionne: Exactly.

Diva: Because I learned that the hard way. Cause I had a therapist when we lived in the middle of the state. You have to take care of you first. If you don’t take care of you, you can’t take care of them. And that’s where a lot of parents stop. They only seek help for the children, they are there for themselves as well.

Dionne: Right.

Diva: Listen, if you don’t seek help for yourself and get educated for yourself,

To know what is going on with yourself and your child, you will never be able to advocate for your child.

Dionne: Right

Diva: The Best. Because you are your child’s best advocate. And you are your child’s best voice, because if you don’t get that education on what’s going on, and read what they put in front of you, instead of just signing…you’re going to miss that. Because with me, I learned that the hard way. So I do girl days with my gym buddy.

Dionne: Good.

Diva: As you see my nails there.

Dionne: Oh yeah, You have  – nobody can see this but I can see it – you have fabulous nails.

Diva: Thank you. And they are mine. I just go get the acrylic overlay and get the nails…

Dionne: They are gorgeous.

Diva: Thank you. I have my green nails for mental health.

Dionne: yes. Awareness.

Diva: yes – mental health awareness – and the rest of them are black and I have white one blue  – I am not going to tell you which finger is blue.

[laughter]

Dionne: We can’t say that –even on the podcast –

[laughter]

Dionne: But it stands out.

Diva: Yes!

Dionne: My son calls that his expression finger.

Diva: Yes – and it is mine, because my 24 year old be like, “Ma, Ma”, she be like, “yes, I did”. [laughter] But yes, I do my music, I do my girls day with my gym buddy, either that, we go get our nails done, we go out to eat, get a drink.

Dionne: That’s great. Self-care is so important. So, that’s self-care. How do you advocate for yourself?

Diva: Oh. Umm..

Dionne: Not for your kids, but for you.

Diva: For me, I am a very soft-spoken person. And a lot of people think because I have this little girl look, because I everyone thinks I am in my twenties or thirties

Dionne: You are very young-looking.

Diva: And everyone thinks I am a little girl because I look so young, I’m like, “Don’t let it fool ya.”

Dionne: That’s cause your youthful.

Diva: [laughter] Thank you. And I tell people, “Don’t let it fool you.” Cause I’m very knowledgeable about what I want and what I need. And if I’m telling you what I need, and you’re not helping me to get what I need, I am going to go around you or above you to get what I need.

Dionne: I see.

Diva: And if I have to go through you to get what I need, I will do that too. So, my needs – I will do that too.

Dionne: You will advocate for your needs. So, in all of this, and this journey that you’ve been on, this journey that you are still on, if you had to point out some of your most laughable moments. Moments where you just have to sit down and just laugh about life. What you say is your most laughable moment is? So far?

Diva: Ooh. [laughter] I was in one state where we lived in, the principle kept saying, “we have done all we can do for your son.” And he kept saying, “your son”. He didn’t know my son’s name.

Dionne: I see.

Diva: So, the table was about as long as this table. And I looked at the table, and I didn’t see the assistant principle. I said, “Do you know anything about my son?” And he looked at me, “picked up a pile of papers . I said, “He don’t know jack squat about my son.”

Dionne: Right.

Diva: And he looked at me and everybody looked, cause I’m a soft-spoken person, so my voice raised, and he was like …I said, “All you know is what you are reading on that paper,” I said, “Do you not know my son is a little comedian at times?” I said, “Do you not know my son’s name is dadadada – not ‘this child’?”

[laughter]

Diva: And I said, “You don’t even work with this child.” I said, “Could you please bring in your person that works with my child?” And he was like, “Can you please get her?”  Because I said, “if we keep sitting here we’re not going to have this meeting. “

Dionne: Right.

Diva: And he looked at me like I was crazy. And they were talking and I was sitting there. And he got up and went and got her and she came in and sat down and the meeting continued. And it was so funny because, when we were done, my advocate was like, “I can’t believe you did that.”

[laughter]

Diva: And I was like, she was like – wow – “Silence was golden with you.” [laughter] And she was like, “I can’t believe I heard you yell. She said, I have never heard you yell. She said, “yeah, you would be a great peer specialist.” I was like, “who said I wanted to be.”

Dionne: Is there any particular organization, since were at a major conference, that you would like to give a shout out to [can hear writing on paper ] Oh Ok. Can I say the organization? I won’t say the state.

[This portion was deleted because it was not possible to identify the organization without identifying the state.]

Dionne: Thank you very, very much Miss Diva!

Diva: You’re so welcome!

Dionne: And this was, and I always say this, but I totally mean it, it was eye opening, it was inspiring, and you are amazing.

Diva: Thank you.

Dionne: Thank you.

[music]

Female Voice: You have been listening to “Just Ask Mom”, copyrighted in 2018 by Mothers on the Frontline. Today’s podcast host was Dionne Bensonsmith The music is “Olde English”, written, performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFrontline.com or subscribe on  on Itunes, Adroid, Google Play, or Sticher.

 

 

 

Advocating for Foster Kids, Ask the Advocate Episode 5

logo: purple lotus flower with white figure inside holding arms up on black background

In this episode, we listen to  Andre Minett, a father of two, husband, and social worker. He discusses his experience advocating for foster children and his own experience as a father with a child with health condition.

Transcription

ATA 5 not edited

[background music]

Female Speaker: Welcome to “Ask The Advocate” where mental health advocates share their journey to advocacy and what it is meant for their lives. “Ask The Advocate” is a Mothers On The Front Line production. Today we will hear from Andre Mina, a father of two, husband, and social worker. This interview was recorded at the 2017 National Federation of Families for Children’s Mental Health conference in Orlando Florida. During this particular recording, you can hear music and noise in the background from another event in the hotel. Please don’t let this noises distract you from Andre’s story.

Tammy Nyden: So, I’m just going to ask you to introduce yourself. Tell us a little bit of who you are and then the kind of advocacy work that you do.

Andre: Okay. My name is Andre Minett. I’ve been a social worker since about 2002. Definitely, this is what I do because this is the only thing I’m good at.

Tammy: I doubt that, but, okay.Andre: So, I’ve been working with children especially since 2002, right from Miami, D.C., now, here in Florida. I’ve been doing this work kind of a long time. It’s funny when I look at my resume, and then I’m like “man, I’m old.”

Tammy: That happens quickly. Doesn’t it?

Andre: Yes. My oldest son is about to turn four, my youngest son just turned two. I’ve been married for seven years. That’s kind of the highlight of my career, really.

Tammy: Right, right. Those are fun ages, too.

Andre: Yes. That’s where the real work begins, you know.

Tammy: Yes.

Andre: That’s where you understand everything you have already done, you know.

Tammy: That’s right.

Tammy: Tell us about your advocacy work.

Andre: So, I’ve been advocating for children for a long time. You almost don’t even look at it as advocacy, it’s just something that you’ve been doing for a long time. I’ve been working in foster care. I began my career working in foster care and so to advocate for a lot of those kids who really didn’t have parents who were able to advocate for them. I became their parent. I’ve been training foster parents on how to raise kids, even though, I was about twenty-two years old and telling a fifty-year-old woman – and men –  how to raise their kids. It’s kind of raising their kids, raising my kids, that they have custody of. The way we kind of wanted and for them to be ready. It’s kind of hard too, because, you know, you have to set a standard of how you raise your own kids. You have the ideologies and all that stuff, but, you know, when you say that to a parent, who’ve been spanking their kids for a long time, like “don’t touch my kids”, you know? Yet I do it in the most professional way as possible. But, you know, you check on them, and you do things like that. So, I’ve been advocating for foster children. At one point I had my own mentoring agency, where I took kids in a city who were underprivileged, and kind of raising them that way because the Foster Care System, you kind of had the whole zone, what you can do and how you can do it.

Tammy: Right. Can you talk a little bit about working with the foster kids? Where are the areas were they were really needed an advocate to help them out? I’m sure there’s many. Just pick a few.

Andre: I mean, even in the court systems, where those custody battles of determining parental rights for adoptions. So, a lot of the foster parents and the parents, they have to kind of navigate through that and think, “look, what is the best thing for these kids?” Because that’s really all came down to. It’s kind of, having everyone see eye-to-eye. So the court system, you didn’t have to advocate within the system of the foster care system because I was privileged to be a part of a therapeutic foster care system with a private organization, but you also have to deal with the state. That was kind of our managing entity to work.

Tammy: So, did you do therapeutic foster care yourself at any point?Andre: No.

Tammy: I misunderstood. But you work with the agency that did it?

Andre: I just worked with the agency. Right. A lot of the times, you would want to try to transition a kid from one home to the next home because that’s right for that kid. Sometimes the state would say, “okay, look, just put him in a home,” and you have to say, “look, here’s the plan, here’s the plan that we have,” because you have been attached to that kid and you kind of know what’s best for that kid, and you see that kid maybe five to six times a month, you know.

Tammy: So talk about that of it, because I think, in the work we do, we talk a lot of times about how the parent’s the expert, but here, you have kids who their parent can’t advocate for them at that moment. So, the closest thing they have to that could be, this person who’s working on the system on their behalf who knows them as opposed to someone else who they might get passed off to as they only met them. How do you navigate that when you know, like, you know a particular child, you know them?

Andre: Well, I think, the best thing to do, and somebody told me when I first started social work. I said, “what does making you–” as she was a parent, that’s one of my fellow social workers, I said, “what makes you a great parent?” I said, “does a social worker can make you a great parent?” She said, “no, being a parent makes me a great social worker.” You see some of these kids in these situations when their biological parents are, you know, I’ve had parents who were struggline on drugs but still wanted their kids.

Tammy: Right. Well, of course. At that moment they needed to help themselves so they could help their kids, right?

Andre: Right. A lot of times they don’t know that. That’s the hard part. Because you have this six, seven-year-old kid who wants to go back to their parents who probably even sexually abuse them. You have to say, “look, there’s help.” You have to really be non judgmental when it comes to advocating between the kids and their parents. I was twenty-two when I started and a lot of these parents who were about twenty-two, twenty-three when they had their first child. You know, I couldn’t imagine them, besides professional work, my personal life is a little bit different. So you could understand how some might have a personal life and think it is okay to have their kids in the home when they’re doing drugs but they’re downstairs. It was kind of difficult just kind of having the parents come to an agreement, like, “we know you understand, we know you love your child, every parents going to love your child, and there’s a way that we expect things to happen for your child.” So, navigating between that was sometimes difficult, but you know, when you kind of come with a non-judgmental spirit with some of those parents, and say “this could be anybody.” Even myself if given the wrong situation. So, you educate the parents, that takes a while. Yes, it’s a system, that could take a while, even longer, but, at the end of the day, when everyone’s their best interest is the child, and that’s it, when you can actually really say that the best interest is my child, this child, and all the kids I have – somebody asked me, “how many kids do I have,” I’d say that I have hundreds, because it’s just, it’s hard to look at somebody’s thirteen, it’s hard to look at someone who is six, even a baby. To say, “look, we’re going to do the best thing for this kid,” and I took them as my own. I honestly felt like the only way I could actually do this child justice is to actually think that this child is my own. And that’s hard, but I’m so glad that I did it when I was twenty-two years old because I could take it home to nobody. It was difficult, but, you know, it needed to be done.

Tammy: In the work that you do, have you been doing any of this work since you’ve become a father?

Andre: I… Yes.

Tammy: Then had that change the dynamic at all of how you went to work, how you felt doing your job? Did it adjust anything for you?

Andre: Being a father is a lot, it kind of put everything in perspective. Because I really thought that I really knew—

Tammy: And first of all, you were twenty-two, what twenty-two-year-old doesn’t know everything? I mean, let’s just start off with that.

Andre: Exactly, exactly. But at twenty-two, I realized that I had a lot to learn but I’ve also realized that I had a job to do. So, it was kind of navigating between that, it was like, okay, look, I would tell these fifty-year-old parents on how to raise their kids but I got to… But you know, being a father is a lot. So,my son was diagnosed with Sickle Cell.

Tammy: Oh, so you have experienced also with a child who has health needs. So that’s helpful for you to relate. Not that you want that to be the case, but—

Andre: No, but, it put in perspective some of the things you do. Then, honestly, how some of these parents really felt. When the Cancer Center calls you when your son is two-weeks-old, and you’re only thirty-three years old, and, I don’t know if my kid is going to live or die, because you don’t know anything about the disease, or anything. So, the advocacy that came from that, saying, “look, okay, I already love my kid, he’s two-weeks’ old, I’m not giving him back.” So, thinking of kind of where that comes from or what you had to do as a family. Then it kind of puts it in perspective, some of these parents and what they’re going through. When they’re hit with certain situations at such a young age or old age, or whatever it is, what I need to now do? So that kind of helped bring some of that stuff into perspective and kind of see their point of view a little bit more. Okay, look, I’m thirty-three years old when I had my son and realized he was diagnosed with sickle cell – and we were still going in circles and I’m educated, I’ve been through social work, I’ve been to all of this stuff. Imagine —

Tammy: It still makes you spin, right?

Andre: Right. Yes, and I had a world of support around me, behind me. I had my wife, I had a community, I had the church, I had my family and friends come together. It was a natural healthy type of support system. Imagine when that’s not the case. What do you do? Where do you go? So, that kind of put the advocacy level just a little bit higher. Obviously with age comes a lot of experience through experiences comes to a lot more.

Tammy: You hit on something that, I don’t think we talk about enough on this interviews, and that is, a lot of us who are actively engaged in children’s mental health advocacy for instance, are so privileged already that is allowing us to be involved in this advocacy. Some of those privileges, like right now, I’m only here able to interview you because my mom is watching my kids. Okay? So I have this built-in amazing support system of a wonderful mom who is amazing in doing all this, not everyone has that.

Andre: No, they don’t.

Tammy: And so, as you’re talking about being non-judgmental with the people that you’re helping in your work, a lot of them don’t have any support system.

Andre: No, they don’t. That’s the scary part. Honestly, because I know how I felt when I was hit with that news. We’re still working through it, but we worked through it.

Tammy: Because there’s nothing worse than knowing your kids can suffer, and being powerless. I mean, you get them the best care, but you can’t make them not suffer.

Andre: You can’t do anything. All you could do is what you can do, but you can’t do anything with them. That’s hard. Just imagine, I’m just thinking about some of the backgrounds that some of my families came from. Now, put it in perspective, some of the things that they are going through, drug-related issues. It’s so easy, honestly, to be judgmental in these situations. I certainly did my share of judging, like, “how could you do this?”, “how could you do that?”, but, when you understand a little bit about the background even though my kids are not raised in a drug-infested background, you’ll understand when you could be hit with certain things that you can’t deal with, where do you go when I have nowhere to go?

Tammy: Right, and as you know, with a lot of drug use, sometimes you self-medicating for something that’s not diagnosed or there are really difficult situations without support. Not that it’s a good choice… It’s not. But, we can make the choices that are presented to us. If we don’t have a lot of support, we don’t have as many choices presented to us and I think we need to keep that in mind.

Andre: Yes, and then the environment, too. If you’re having drug-use, who are the people are supporting you? Probably people who are giving you drugs or the people who encourage you about “this is what I did.” I had one family, when I was in Florida, her son was diabetic but he was severely obese – he was about three to four hundred pounds. His A1C level was supposed to be like 2 or 3 I guess, it was about 15.

Tammy: How old was he? Was he a young child or a teenager?

Andre: He was about thirteen, fourteen-years-old, but the mom was also overweight, severely obese. She kind of went through some of the same things, so, her message to me was, “I’m okay, my son will be okay.” How do you kind of convince that “look, we all need to change.” Trying to come in, “I work with this family for about a year or so,” it’s trying to convince this mom on “look, your son needs help. He’s under my care.” So we created a program that kind of dealt with weight loss and also healthy eating and worked with a lot of dieticians but, unfortunately, in that case, I had to call DCF because she missed maybe a couple of health appointments. I want to let that go but she missed the third one without letting me know. I gave her a warning so I said, “look, I have to look out for this kid and if he’s going to live or if he’s going to die”. You know, it couldn’t be on my conscience, I’m trying to be nice to this mom, while this kid is suffering. You also have the other mentality, like, “I’m fine, my kids are going to be fine, I could be in drug-use, I’ve live, my mom did it and I lived, and now, it’s okay.” You had to have somebody to come in and step in and say “look, this is kind of the fine point when things are not okay. Look, I know things have been going well, I hope things continue to go well but we’re going to do things a little bit different.” You kind of have to have the trust of the family. When you come in with a judgmental attitude, you’ll never get the trust of the family. But you come in and say “it’s okay, I understand or maybe I don’t understand, but, look, we’re going to try to get you help as quickly as possible as much as possible”. When your job, especially with me, when your job is to look out for kids, and you love these kids, it’s kind of hard to not do the right thing. Even though it’s going to hurt your relationship may be with the mom like it did with that other mom there. Well, we got that kid help. He went to a camp and he lost maybe over a hundred fifty pounds and his A1C level went down, but he had to be separated from his mom for a while which kind of hurt. But, being an advocate, those are some of the risks you take but, when the end of the day and your job is to take care of these kids because I was concerned whether this kid’s going to live or die. Those are some of the hard choices that people deal with as an advocate. You want to be in a family’s life but sometimes that means that you have to be taken away just to do the right thing and that hurts. It does.

Tammy: Right, absolutely. Because of course, the child’s health is the concern but the child wants to be with his family, and that has been really position to be in. How do you keep going, like, how do you knock your burned out?

Andre: One, you had to know that this is your calling. Like I said this is probably the only thing I’m good at. And believe me, I tried to run away a couple of times.

Tammy: Just they pulled you back in, right?

Andre: When you love that type… Then you have your own life separate. I think, over the years, I’ve been doing this over the years – since I’m 22 years old –  over the years, I really learned how to separate myself just a little bit. I think a healthy attachment is important to keep advocating, but, you kind of do things that allow you. Then I have my faith, I go to church, so that kind of relieves some of those issues.

Tammy: Right. So how do you take care of yourself? So, the church helps and having some kind of separation of your life and your work. Is there something that you do to just sort of… Because there has to be a lot of pressure at the end of some days. Disappointment, frustration, every case can’t work out, right? And that has to break your heart. How do you – individually like you –  keep pushing on?

Andre: Yes.

Tammy: Faith is very important and I can see that. Is there something you do that just helps you sort of blow off some steam? Re-center?

Andre: My wife is really good. I mean, having a supportive wife.

Tammy: Yes. That’s important.

Andre: Yes. That’s really important. My wife says all the time, “I couldn’t do it.” I couldn’t see my wife doing this work I do, she’d be coming home every day crying or adopting eight thousand kids.

Tammy: That’s right. You would have a big family.

Andre: Right. I think taking my time with my friends, and my wife is really good at having me go out with some of my friends and relax, away from my family too. Because we have our own routine that we go through every day. My kid is about to be four and two. But you know, having that routine just kind of breaking up just a little bit.

Tammy: That’s really important, in fact, there are just recent studies talking about men in particular that are in society men don’t always hang out with other man and it affects their health. As a woman, I know I’m not always telling the man in my life “you need to go out and have poker night” or whatever. We don’t encourage it necessarily. But it’s important—

Andre: That’s extremely important. I didn’t realize how important it was until my wife actually forced me out of the house one time to go to a basketball game.

Tammy: Good for her.

Andre: I’m from Connecticut, so the Yukon Huskies are playing. She forced me to go out. It was just kind of like  “I have to look over the kids. I have to cater to my wife just a little bit.” So ever since then, I’ve been doing at least once a month, going out to see a movie, and I think that’s extremely important.

Tammy: I think it’s important for any man, like, everybody, to be able to get out with some friends that you don’t have obligations to, like family, even your most loved ones, right?

Andre: Yes. But you know, that’s one thing I admire about women and as far while women lived the longest, they know how to take care of themselves.

Tammy: That, well, we’re trying.

Andre: I mean, for the most part, you guys know how to take… I was just making a joke to my friend here. I said, you know, my wife and her friend just went out and they went to a spa date, massages over there. “You want to go out, let’s not call a spa date, let’s just hang out at the spa all day.”

Tammy: Yes, exactly. Exactly.

Andre: I think that’s important because they had fun and she came back so refreshed but she does stuff like that.

Tammy: I think you’re right. I think it’s easy for women to go do that whereas for men we really need a different name for it so they feel more comfortable about it. But yes.

Andre: I’m comfortable with my manhood. We could go out and have a massage, sit down and talk, watch a game, or do something and that think that is extremely important for people to take care of themselves, especially men. I think we bottle up a lot of stuff.

Tammy: I think that’s true for anyone. And then, if you’re working in this field where, or again, if it’s one of your kids and they get diagnosed, you feel helpless, but you’re watching kids. You could only have so much power in this system to help them. That has to just sometimes feel frustrating and powerless, right?

Andre: Yes.

Tammy: So, just to be able to take care of yourself so you can go into the next case the next day and help that next kid.

Andre: Because I think when you’re really passionate about what you do – there’s going to be a lot of stuff that kind of gets to you, that you can’t do. Even the other day, I think yesterday, I was looking for one of my kids on Facebook that I taught a long time ago in Baltimore. He even joked that he was my favorite kid. But, there’s a lot of them. I wondered what happened to him, what’s going on with him. Because you feel helpless that you can’t control some of the path that your kids go through. That part is hard. That part is really hard, but I’m praying for them every night. I pray for all my kids every night. I’m a faith-believer and I understand that God is actually going to take care of a lot of my kids that I’ve watched over the years. When you can’t do anything, God’s going to.

Tammy: He’ll take over, yeah.

Tammy: Well, let me thank you for the good work that you’re doing on behalf of just all of us because it’s so important for us as a society, as family members, everyone  – to know that someone’s out there watching after the kids.

Andre: Yes.

Tammy: So, thank you for all the work you’re doing.

Andre: Well it’s a whole bunch of us out here doing it. I mean, we’re at this conference full of people that are advocates, so it just feels good.

Tammy: It does feel good to be around people who care about kids and they’re dedicating their lives to helping them. It really does.

Andre: Yes. Thank you so much.

Tammy: Thank you so much for sharing your story with us.

Andre: Appreciate it.

[background music]

Speaker: You have been listening to “Ask The Advocate”. Copyrighted in 2018 by Mothers On The Front Line. Today’s podcast host was Tammy Nyden. The music is written, performed, and recorded by Flame Emoji. For more podcasts and this and other series relating to children’s mental health, go to mothersonthefrontline.com.

[END]

 

 

Getting People to Listen, Just Ask Mom Episode 15

Lotus Flower Logo: Just Ask Mom Podcast Series Produced by Mothers on the Frontline. MothersOnTheFrontline.com

In this episode, we listen to Cheryl who overcame and found the new Cheryl.  This mother of three shares her powerful story of overcoming trauma and serious illness to advocate for her children with special needs. Please be advised that this episode contains discussion of sexual abuse and a suicide attempt.

Transcription

Voiceover: Welcome to the Just Ask Mom Podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today we will hear from Cheryl who overcame and found the new Cheryl. Please be advised that this interview contains some content that may be disturbing or upsetting to some of our listeners. Also, this recording was done at the 2017 National Federation of Families for Children’s Mental Health Conference and there is background noise from another event taking place at the hotel. Please do not let the background noise distract you from Cheryl’s story.

Tammy: So hi, tell us a bit about yourself. Before outside of mothering, what are your passions your dreams?

Cheryl: I’m a mother of three and my youngest had the unique passions I should say because everybody thinks that everybody have a disability. Some of them you can see it and some of them you don’t.

Tammy: That’s right.

Cheryl: My passions are education awareness and I’m learning that I have more passions as I’m going through my journey and each journey is different. My favorite thing to do, I picked up sewing crocheting and learning how to relax.

Tammy: Yes. That is not so easy. Ironically it’s not so easy, right?

Cheryl: No, but it is and you would know why it’s not easy.

Tammy: That’s awesome. And so I want you to pretend that you’re just talking to just the general public is getting to hear what you have to say. What do you want them to know about your experience? What do you want them to understand?

Cheryl: I am a 45-year-old African American and my two kids, my two oldest are 25 and 21. So the way I raised them was totally different than when I raised my 15, soon to be 16. Each of my children they saw experience of me, but my sons saw the worst.

I was in an abusive relationship. I’m originally from Philadelphia but I went down south and I found out that all my life I was a caregiver and I didn’t know how I’m just it doesn’t mean nothing. I was taking care of me. I was taking care of my kids, I was taking care of my husband, taking care of my mom, my great aunt.

You know, anybody, its just everybody would come and say, “You know how to be a caregiver”. So in my bottom, in my journey, when I was going through my abusive situation with my husband I just said, “When I hit the bottom, time to go” I just up and I left thinking that my son will need counseling for me just up and left.

I said, “He’s going to need that because he was so young he don’t need nothing” I learned that he was– his unique gifts was coming out and I didn’t know what this is or anything and nobody wouldn’t tell me what it was.

And I have all these questions and answers and nobody. So, my mom always taught me if you don’t know do your own research. Don’t believe what other people say, do your own research.

Tammy: Right, good for her by the way. That is pretty awesome but go ahead.

Cheryl: Yes, so I started doing my own research. I didn’t know what IEP is. I didn’t know why they did all these tests and everything else. The first thing I had to do is stop blaming me, I guess. As a mother that’s the first thing we do is blame.

Tammy: Yes it is.

Cheryl: I was in a relationship. He beat on me because of that. I didn’t take all my medicine, all my vitamins and everything. As that went on I found out that it wasn’t. So I find out that I went to therapy. Don’t think I’m crazy or nothing but I start seeing my mom and my dad.

Now my mom and my dad died in 1994 and my dad died in 1981. This is now 2008 when I’m seeing and I’m actually– they are actually talking to me. People thought I was crazy and I’m like, “I’m not crazy. I’m actually seeing my mom and my dad” and I started seeing flashbacks of the things that I saw at the age of two, four at five.

I find out that my mom was abusive too and I started getting headaches so bad, it was a migraine, and I had all the signs of that. The doctors told me that it’s a brain tumor. I’m like, “I’m not claiming that. I’m not. My mom and my dad say it’s not. They did” I’m like, “But my mom and my dad say not, its not”.

And I was like, “Okay, you all don’t know nothing. I’ve got to go to another one” They said another thing. So one night I’m like, “God just give me, just give me the faith and the confidence that something is wrong”. My mom and my dad came and they was arguing. Like literally was arguing at each other.

But one on this side one isn’t and my mom said, “It’s migraine” and dad say, “It’s constant headache. Migraine … constant …” Why? I’m like, “What the hell is going on?”. And then they both turned around and said, “Go back to where you was in Philadelphia before you left to South Carolina”.

Tammy: When you were young?

Cheryl: Yes, before I left to go to– when I left Philadelphia I went to Thomas Jefferson and I came back and I was going to different high schools and everything else.

Tammy: Oh I see.

Cheryl: And they say, “Go back to where you–” you know, the doctors that you was before. They think I’m going to be crazy. I did and then I found it was like they use constant headaches now more. I’m like, “I’m telling you, check for clusters and migraine” they were like, “Well how–” I said, “Just please just do it. I don’t want to tell you how but do it”. And then I start getting flashbacks of my rape.

Tammy: Did you know, remember that or was it like the memory that resurfaced?

Cheryl: It was resurfaced and I blame my mom for it because that was the time in July that she passed and it happens I got raped twice the same day, a year apart by the same guy. And I’m always just blaming and the image and everything else.

So then I found out that I got PSTD and it’s like a certain man. I couldn’t go around and oh I smell and everything.

Tammy: So your body remembers this?

Cheryl: It was starting to remember and I was starting to read and I found out that some things are hereditary. I found out that the migraines and my dad had clusters, which I found out that men don’t have migraines, they have clusters. So I started doing my own research and stuff.

For me it was I get all the side effects of a  migraine. So, the dizziness, the passing out, and everything else. But I still didn’t understand why my dad was abusive. The rape was coming up and everything else.

Then it dawned on me, I was like, “Okay I did what I did. I did what I was supposed to, I called the cops. I did everything. Why he came back?” and I didn’t know and that was a burning question that I need. But in the process I let myself go and I have a child that don’t know nothing and I’m trying to figure out what it is.

I let myself go and my self-care, my self-worth, and everything else. And when I looked at my sisters and my other friends and family I thought, “I need help”. They said, “You strong. You don’t need no help”.

Tammy: It takes strength to ask for help.

Cheryl: And I’m slipping, I’m telling you I’m slipping, I’m slipping, I’m slipping, and its not where it is and I’m seeing every time I go to the hospital for two weeks to a month my child is not speaking and you not and I find out that when he’s at my sister’s or at whoever they were. To tell you the truth I didn’t know who. They say one thing and then I find out later on in life it was somebody else.

Tammy: I see.

Cheryl: So now you’re telling that he– you didn’t even want him. I had a doctor say, “Get your affairs in order” I’m like, “I’m not going down this way. I’m too young”. You know what I’m saying?  Then more research and then I find out they were giving me at that time, in 2010, they gave me– I was on 20 medicines.

Tammy: 20?

Cheryl: 20.

Tammy: Oh my gosh.

Cheryl: And a patch. I was on Fentanyl, I took it three days and I said, “No. I’m sleeping. How can I take care of a child?” and then I find I start doing my own research and what medicine worked with this and I got so bad that my child don’t even want to take his medicine because of the journey that he saw me with.

And I said, “I had to get better because of him” and if I can’t do it nothing else I had to do it for my three kids and it was a journey and nobody wouldn’t help. None of my family would not help. They used to say, “Oh you got it. You don’t need me. You’ve got this. You’re strong”.

I’m telling you I’m screaming. I’m telling you I need help. No one. All they wanted was money because that’s I wasn’t given. When they called me and they like, “Do you have? Do you have? I need, I need. Can you watch? Can you do?” and I came with it, but now it’s my turn to lean with you.

I’m not asking you to lean on for a minute. You know a minute, not a long time. I just need strength. He won’t do it and I lost everything in that process. I lost my house. We went into a shelter, I lost everything. My son saw me at my worst and he was mad at me.

Tammy: How old was he then?

Cheryl: At that time he was, I would say around about eight and nine when we went into a shelter.

Tammy: How heartbreaking.

Cheryl: He actually saw that my sister took it right under me and everything. Why would you do that? So me and my son went to– its called Ocean Avon Cherry. He is supposed to be going to school but state policy is from six thirty till five they come here and see if I can find a house, I mean find a place. For four days, four.

I had my bags, my ID, and him. They said they could not find nothing. I said, “I can’t do this no more. He has to go to school or they will come to me for truancy. He had to go to school. I can’t keep on figuring out if today is the day or tomorrow and you want me to wait from eight thirty till five, I can’t”.

We slept in 69th Street terminal for one night. I was like, “I can’t do this. Just give me strength”. Wherever I’m walking I’ll just walk. I went to the library, I had a pamphlet and they said they had organizations. I just start calling and nobody didn’t have no places up there.

So Salvation Armies called and said– I talked to them and they said, “Pott’s Town” I’ve never heard of it. I said, “I know about Norris Town, but Pott’s Town, I don’t know about Pott’s Town” and they say, “Well I can meet you.” So the nuns came and got me and my son and I stayed in Pott’s Town for like three months.

And they got me into disability. I was lucky that Tommy Jefferson they was calling, my doctors was calling me making sure do you need a ride? Just meet me at 69th Street and a van will come and pick you up because out of [inaudible]. They did that.

They did all the testings all over again. Now I know why I was sick, you know, saying they work on my disability. I’d be an outpatient. I said, “Now I’ve got myself together” and when they told me that I had brain tissues or whatever. Not the way I needed my fear, I said, “I’d rather just take some pills”.

Me dummy, I called a dummy move. I had Percocet and I had muscle relaxant. God forbid, God knew I had an angel on me because I took a whole bunch of muscle relaxant. So, my body would just relax and everything else. It wasn’t time for me to go. That is how I see it. It wasn’t time for me to go.

But how can you– I thought that everybody is telling me that I’m going to die anyway so I might as well do it the way I want to do it, in my sleep. No pain no nothing.

Tammy: But luckily that wasn’t that night.

Cheryl: It was not and then I looked up and I saw my eight year old like, “If you leave where am I going to go?”.

Tammy: Of course, he needs you.

Cheryl: And at that time his father was in and out of jail and I looked at him like, “I don’t have nobody don’t want you”. I sat my kid down and I was like, “I don’t know what it is but whatever you do you are all old enough and you have all got different fathers, but stay together”.

Because I said, “He’s going to go back down where his father lives at and his father’s people is going to stay with him because I already called his father people. I say, “Whatever you do if anything happens to take care of my son. Don’t let my family be around except his sisters”.

Tammy: What would you like people to understand about this experience? What is sort of the thing that you think if they knew it might make a difference?

Cheryl: I found out that when I was going with on one journey and thinking well one for my son, I had to look at the whole picture and I had to do some soul searching and I said, “I need help too” So just because one person the youth isn’t– my son is, you know, need medical attention and stuff like that.

I found out in my journey that I need it and it’s alright to say, “I need help”.

Tammy: Yes, it is.

Cheryl: And I understand since I didn’t have nobody, you know, I mean I had one person that I refused to use her because she was older, she was my grandma. She’s older and she would do anything but I was raised that you older so it’s my job to take care of you.

You know saying, “You over 70 years old. It’s my job to take care of you” that’s how I was raised. So the only thing you can give me is support. So, I had to, with my migraines, I had to learn how to decrease the stress and everything else. But I don’t have all this money.

So I had to go back to research and say, “What can I do with when that calls?”  I picked up back what did I like to do when I was little? So I picked up sewing, I picked up crocheting and that’s what relaxing.

I find out that lavender is, you know, so I had lavender. You know what I’m saying. Soap costs a dollar, just saying lavenders little thing. I burn it up. You know anything pink. Lavender flowers. So when I go into my bathroom all you see is lavender and the smell.

I found out I love water, so I made an appointment that every, you know, certain days, I take a deep bath, just relax.

Tammy: Right. So, ways to take care of yourself.

Cheryl: And I do and I get up a little earlier, you know if I had to meditate. I don’t know what other peoples religion or faith is but I just take time for Cheryl and get to know who Cheryl is all over again because you don’t know. You in a different stage and you know, and each stage you form, you are like a butterfly.

First, you are in a cocoon and you got to sit there for a little while and at the end, you are a butterfly that you are in stasis and each stasis is different.

Tammy: So, when you think about trying to get help for your child because you have this whole journey, right?

Cheryl: Mmm hmm.

Tammy: And a big part of that, and thank you for sharing, is getting yourself the help you needed so you could help your child. Once you had that and you’re trying to help your child what is the thing that was the most challenging for helping your child?

Cheryl: People listening. I’m telling them something is wrong. I don’t know what it is. I couldn’t pinpoint and they kept on asking me the same questions. All I wanted to do is … it’s something. They always want to like– they were like, “Oh he’s– something is wrong”.

They want to put him in a slow class and I said, “I know my son is not, you know, special ed. He knows how to write, he is bright. Something else is missing, I just can’t pinpoint his anger, the way he just bursts out with behavior. That is like this is not him”.

I went to the doctors, I went to anything that I can think of I went. Nobody wouldn’t do it and then– or for him to get the help. Finally, he had to be in some kind of system and one day he was mad about something, his dad didn’t call or something, and he used a pencil and he stabbed himself in the school.

So they were like I had to 302 him. What is 302? I think he need help or for him to get into the system that’s when I found out at all this other stuff. Why do I got to wait all this time? I’m telling you for five years that he need help but nobody was not listening.

Tammy: No one would listen.

Cheryl: Nobody and the school were labeling him as a problems child.

Tammy: As opposed to a child with a problem.

Cheryl: And then when I went through this journey and everything else, I found out that he was traumatized. When you first hear trauma its always the sexual abuse or neglect, but for him, like I said, for him that was trauma because I left. I just up and left. Something that he has known for seven years.

And I just said, “Come on let’s go” and we left. So for him to be a child that was trauma. I’m not even talking about what he saw, you know, I think he never saw me get beat up. But that right there was trauma to him.

Tammy: Absolutely.

Cheryl: And he held it and now he can’t see or he can’t touch, he can’t talk to his father, and they had a close relationship. That the trauma of each thing is different. So told him that it was trauma and he goes, “I know because it’s not sexual, it’s not a bruise” It is. It is trauma.

Tammy: Yes absolutely.

Cheryl: Even though it wasn’t like for a five-year-old or a six-year-old or anything that’s trauma. It wasn’t forced, he didn’t like force and I didn’t know, but that’s trauma, and you all did not listen to me when I told you there was a problem.

Tammy: So, in helping your son, I like this question because I like to hear something positive because it’s always so tough, but is there anything that went right? In getting your son help is there one thing that just like, “Well I’m so glad that happened” that helped?

Cheryl: I learnt how to communicate in a different form.

Tammy: How so?

Cheryl: I realized that every culture is different and everything else, but for me being an African American we were taught the fifties to sixties and the seventies, even in the eighties it was to say, “Yelling and screaming” and everything else.

But this generation here is totally different. You know what I’m saying? So, just because, you know what I’m saying, five people are doing the same thing, this group is not, but we trying to force the old system, I should say, to this new– the punchbag. It’s not working.

So, it’s our right to change and I guess the system is not ready to change.

Tammy: It takes some doing to get the system to move, doesn’t it?

Cheryl: And as soon as the system change we going to be already working on something. Another problem is how is the system actually looking down. But for me and my son I had to learn his language. I’m like, “Well wait a minute when I was his age my mom didn’t understand me. I was a teenager”. You know what I’m saying?

So, I’m trying to remember what she did and tweak it and put my little recipe in it and everything else. So after I doing date night. One to one. Whatever you want to do you do whatever you want to do, but the next month its what I want to do and I’ll always want to predict education is something what I do.

Because like I said education was part of it and I was a stutterer. I couldn’t, you know, talk proper and everything else. So I was like, “Alright so when he gets mad write me an essay on what happened” because he couldn’t put everything– when he gets upset or his speech wasn’t– I was missing something.

Okay, write it down in an essay form and tell me what did you do, how you do it and do you need to have a consequence because every action is, you know, bad or good, is what you’re supposed to do.

Tammy: Did that help?

Cheryl: That did and then I start changing my form. Instead of saying, “How was your day? What was the best day, you know, for the day? What was the worst day?” you know? Then I find out that he was teaching but he didn’t like the class and I was asking him why.

And he said, “Because it’s fifth, sixth and seventh graders, I’m in the seventh grade. We in the same class. Okay sometimes you got to read through the lines and everything else and I’m learning how to. I’m still learning.

Tammy: Oh sure, we all are.

Cheryl: And sometimes as a mother you just want to go in but then now when I go to the IEP meetings I say, “This is for you” you know so now we have family meetings too but I said, This meeting is for you. What do you want me to know about this? I cannot talk to you no more. I’ve been talking for you for the longest. You old enough and capable to do the work and then they need to hear it from you”.

“If you don’t want to take the medicine. You don’t want this, you want this. Let them know. Because at the end of the day I’m not going to be here all the time” and I let him do it and he learning his voice.

Tammy: So we ask this all the time when we do this. It changes from moment to moment but at this moment right now are you swimming, are you drowning, are you treading water? Where do you find yourself?

[Laughter]

Cheryl: This moment I am swimming.

Tammy: That’s wonderful.

Cheryl: Not fast.

Tammy: Sure. Not in the fast lane but-

Cheryl: I’m not in the fast lane and stuff like that and everything. As a matter of fact, I’m doggy paddling. You know what I’m saying. I’m not actually doing strokes and stuff. I am doggy paddling and I’m happy. I am happy where I’m at because if you literally saw anything in 2009 and everything else.

I couldn’t walk, I was on a walker and all this stuff, but and you’re actually even seeing my son not talking, not doing nothing. Yes he still gets his triggers but now I know if he starts being quiet I’m more alert and I want the parents to be more alert just because they don’t– if they just say fine why is this fine?

Go deeper. Ask those tough questions because you never know where you are going to go to.

Tammy: I think that is really good advise especially with teenagers. I had two teenage boys so I really appreciate the work it takes to get the stories out of them, right? So, we also like to ask this. What is your self-care routine or if more appropriate survival techniques? So, so you told us some like the crocheting and knitting, what do you do to take care of you?

Cheryl: I went back to the beginning and I always tell– you always say, “I’m never going to do what my mom do” that is the worst thing ever and everything. But with me had a speech problem my mom couldn’t buy nothing. She made me read out loud. She made me do things that I’m thinking was just like so crazy or anything like that.Those gifts started coming back to me and everything else and she made me journal because she said-

Tammy: I like your mom. I’m sorry, I just had to tell you.

Cheryl: She was very educated and everything else and she said, “If you cannot speak it you are going to spell it” because I was very like [gibberish] so she made me journal every single day.

Tammy: And that helped you?

Cheryl: So once in a while, I don’t do it every day, but when things is really like really mad, I’m really mad about something and I can’t express it to Leon or express it to none of my kids or anything, I write a letter.

Dear, you know, Doctor such and such, and I just let it out. Then after that, I read it out loud and then I burn it and rip it because now it’s out of my system. If I have ideas I start writing and now I’ve got four or five copy books of my journey of ideas that I want to do, programs that I want to start. Because if I have an idea, I always have a pen and a paper with me because I never know-

Tammy: There you go, exactly when it’s going to come, right?

Cheryl: I never know whenever it comes. So, I always have a pen and a paper and jot it down. Then I started thinking I was doing something for my son. Little quotes saying of it and I just have little quotes. Some are with Maya Angelou, just somebody just unknown. I thought I will put it in the bathroom.

Everybody has at least got to stay there for a long time and they going to have to read. I put them on the wall and its to decorate one wall is just full of quotes, piles of quotes and everything.

And now I do that daily in my office and anywhere and I change them up. I even now do vision boards. Everybody has to do a vision board and then every three months you have to take it off if you have done it and put something back on it. If you take something off you got to put something back on it.

Tammy: That is a nice idea.

Cheryl: Because I believe now with my son they more visual, a visual learner. So, if you see it and you speak it and I had a little complex because of my skin and everything. You’re not going, you ugly and you know what I’m saying and everything.

Tammy: You’re beautiful.

Cheryl: You know what I’m saying? I had bad acne and eczema and everything else. But my mom always made me and my god mom, thank god for my god mom, she always say, “You” she whispers chocolate girl and she played that every morning and every night before I go to bed and she said that you are beautiful you are smart you are kind you are humble.

And I had to say, “I love myself” 25 times in a mirror and during that process, I found out that some days you don’t love yourself, but once you keep on saying it it’s like practicing. Once you keep on saying it, you are going to start believing it. Once you start seeing it you are going to start believing it.

I had to cope with it in every little thing I did and I had to cope with it with Leon because he didn’t believe it so he didn’t do it. So, once you start a knowledge and start being aware of what you’re doing because sometimes as a parent, I know I did, I did stuff that I’m like, “I can do that”.

So, I had to check myself every now and then but like okay. But once they start seeing you being a role model, if you are, eventually it’s like everything that your mom did you know you didn’t like it but a couple of things you remember and you brought it to your– where you at with your kid.

You know what I’m saying? You didn’t understand it at the time with why she’s doing that but thinking that’s where our parent skills comes at.

Tammy: That’s right, that’s correct. That’s true. All of a sudden they get so smart our parents, right? As we get older.

Cheryl: Yes I’m like I don’t understand either.

Tammy: So, here is a question we like to end on. Through all of this whats your most laughable moment? What do you remember that makes you smile or it makes you laugh?

Cheryl: So many. Well for me or through my journey with Leon?

Tammy: For you, just what makes you laugh. Well as a mom.

Cheryl: As a mom.

Tammy: And that’s easy right because the kids make us laugh all the time.

Cheryl: We was a musical– my mom was musical so we did, my mom, you know, I learned the fifties the sixties the seventies and I learned classical. Just listened to the sounds of old and everything else and when I get a chance to have all my kids together or just one to one we will listen to old songs.

And I could say, “Well who was that?” and they will say, “You know, such and such”. So one of my daughters  we went to church and she saw Shirley Murdoch and she said, (sings) “As we let the night away” and one of the girls that was younger she said, “You were singing Catty Price” and my daughter was like, “No she’s the original”.

[Laughter]

And she started laughing. She said, “That’s right” she said, “I know” all my kids know music from different areas and everything. They can just hear just the start of it and they’ll be like, “That’s it” and they will be arguing.

We tried to get my son, he was like, “That’s the soundtrack of some movie” he said, “Well who is it?” he said, “That’s from a movie” well who it is? So he’s still learning and everything else but that’s like the best. You know what I’m saying?

That’s the best and I’m bringing back family time. No tv, no phone, and for an hour we will do family. I bring him go to the thrift store parent and get those little Life– I got Family Feud, we all have the buzzer of just go like this and that is how you start.

Sometimes we have to go back to go forward.

Tammy: That is great advice. I’d like to end on that. Sometimes we have to go back to go forward, I think that is great. Thank you so much for sharing with us.

Cheryl: No problem.

Tammy: Thank you.

Female speaker 1: You have been listening to Just Ask Mom. Copy writed in 2018 by Mothers on the Frontline. Today’s podcast host was Tammy Nyden. The music is Old English, written and performed and recorded by Flame Emoji. For more podcasts and this and other series relating to children’s mental health go to mothersonthefrontline.com or subscribe to Mothers of the Frontline on iTunes Android Google Play or Stitcher.

[End]

 

 

The difficulty of getting the right diagnosis and juggling work and care giving, Just Ask Mom Episode 14

Lotus Flower Logo: Just Ask Mom Podcast Series Produced by Mothers on the Frontline. MothersOnTheFrontline.com

In this episode, we listen to Suzette Southfox, a Southern California parent of a 19 year-old son with depression, anxiety and Autism Spectrum Disorder. She tells us about her over ten-year journey with children’s mental health. She discusses the importance of honoring the strength of our children and others with depression who fight each day to get out of bed.

Transcription

Voice Over: Welcome to the Just Ask Mom podcast, where mother shared their experiences of raising children with mental illness. Just Ask Mom is a Mothers On The Frontline production. Today, we will listen to Suzette Southfox, a Southern California parent who lives with her 19-year-old son who has depression, anxiety, and autism spectrum disorder. She has been on the Children’s Mental Health journey for over ten years now. This interview took place at the 2017 National Federation of Families for Children’s Mental Health conference.

Tammy: Just tell us a bit about yourself.

Suzette : Sure. My name is Suzette. I am a tired mom. I work in the Behavioral Health Field in Southern California. I’m an artist and I’m a writer and a performer. I love to communicate and chat with folks and and create art when I can. Don’t get a lot of chance to do that these days but that’s really what brings me joy.

Tammy: Oh, that’s really great. That’s awesome. What kind of art you do?

Suzette: I do a lot of reflective art. I do a lot of spoken word poetry.

Tammy: Oh, wonderful. Yeah.

Suzette: I do spoken word but I don’t have a whole lot of time to do that. I recently did something for a friend of mine who was just ordained as a Unitarian Universalist minister and I was, I was honored to be part of the ordination and I got to do this, it was fun.

Tammy: That’s exciting. That’s awesome. I want you to pretend that you’re talking to parents who are just beginning the journey. They just received the diagnosis for their child of a mental  health condition or maybe they even haven’t discovered a name for what is going on yet, they’re just trying to figure out how to help their child. What would you say to people with that experience based on what you go through?

Suzette: That’s a wonderful question and out of all the people that I would like to talk to  – and there are  many, many that I would like to speak with – the family that’s really finding themselves newly in the world of childhood mental health and behavioral health issues, I would love to talk to them and I would love to tell them that they’re not alone even though they feel like they’re alone. They’re in a very special club which is one that not a lot of people want to join, but they find themselves in.

Tammy: Right.

Suzette: One of the things that I did not get early on and my son was diagnosed around nine or ten years old with ruled out pediatric bipolar disorder and things were very difficult. It wasn’t until he was 16 when the psychiatrist said, “Was he ever tested for autism?” We said, “Are you kidding me?” So, people, weren’t asking the right questions, but once we found ourselves in the world of IEP’s and special ed programs and all of this, we never met another parent. None of the programs ever had, “Here’s information for your parent,” or you would think that the psychiatrist or the psychologist would say, “Here’s your brochure. Welcome to the world of pediatric mental illness. Here is your road map.” They don’t give you one.

Tammy: Absolutely not.

Suzette: No, they don’t and if you’re lucky enough to have someone with lived experience, you may get a road map but it’s so challenging. Finding those other parents and finding what is available is so difficult when you’re dealing with just the stress and the crisis. I was shocked to learn in my area that there was a whole guide for all of the programs and services but it was for other providers. It wasn’t for families and it took me to get into working in the field to actually discover this.

Tammy: Is that what motivated to get into the field?

Suzette: Well, that was one reason. I work with the Faith community for a really long time and what I discovered was the needs and the stress of navigating my son’s challenges. They were taking a toll on my working life. Before we got the diagnosis either I would call in sick, my wife would call in sick. We would be having to leave work. We knew that one of us would probably going to lose our job. She took an early retirement to stay at home because at that time, my son couldn’t get out of the car in the morning. He missed 125 days of school because of anxiety. As we’re going through all of this, we have support of the school but we just didn’t know other families. I think it’s so important to not only tell folks that they’re not alone but there are networks. You just have to be told where to find them.

Tammy: Absolutely.

Suzette: Yes, and that’s the biggest challenge, I think.

Tammy: I think that’s so important because I know my own experience in talking to other people sometimes the most helpful information I’ve got are from other parents, you know, that have been through it. They all checked out this program or this and without that network, without some way to start, you do feel lost so I think that’s really good advice.

Suzette: Yes. There’s a lot of despair also. At least there is and there has been with me and one of the things that I have learned is there’s a whole continuum of what you go through and it’s not linear. It’s not like, “Okay, I’ve gone through crisis and now I’m balancing and I’m moving into advocacy and when I get into advocacy, boom, I’m done.” No, it depends on the day really.

Tammy: Absolutely.

Suzette:  You can go through that continually. I think one of the things that I would want new parents and new families to know is the despair and the concern is visceral, it’s real. It’s probably not going to go away but if you learn to kind of make some space for that and make some space for dealing with it, it gets a little bit easier.

Tammy: Right.

Suzette: I think the biggest problem that I have, and this is really funny, we’re talking about self-care earlier, is when people say, “Take care of yourself.” I know that but it is so difficult to hear because it’s like, “What do you think I’m doing?”

Tammy: Right.

Suzette: I’m trying really hard.

Tammy: Exactly.

Suzette: Sometimes, just getting up in the morning is like, “Whoa, it’s a win.”

Tammy: Exactly.

Suzette: So that’s important and I know self-care is really, really the key, but I think that we need to be a little careful how we talk about that.

Tammy: Absolutely.

Suzette: Yes, it can turn people off.

Tammy: And we don’t know of access to do the same things to care for ourselves. I think that’s another part of it is what does that mean and the context you’re in at the moment, what can that mean for you, right? I think that’s really important.

Suzette: True.

Tammy: Absolutely. As you’re thinking about people who are navigating this early on and it is hard and is lonely and I like the message you have. I do think we can get to a point where we feel like it’s a new normal. We’ve accepted it. We’re functioning. We don’t feel torn apart all the time but then something new will happen and you go through it again. I think it’s good to know that. It’s good to know you will actually function at this level. You might not feel like it when you first hit with it, but I don’t think you’re even done and I think that’s important to hear too. That’s not a bad thing.

Suzette: Yes.

Tammy: But knowing it’s important because if you don’t, the first time it happens again, it feels devastating.

Suzette: Yes.

Tammy: But if you don’t know, you’re going to keep going and having good days and bad days and it’s okay.

Suzette: Right. It’s a learning and then when our loved ones are youngsters, you have the whole developmental issue going on so they’re constantly changing. One of the first, kind of, desperate requests that I made once we had a psychiatrist and medication and treatment plan and psychiatric nurse, God love her, I remember the first call that I made to her was, “I don’t know. I have one child. I was an older mom so I have one child. I don’t have experience. I can’t tell the different what’s developmentally appropriate and what is a mental health condition.” And she said, “Oh, if you could figure that out, you’d make a lot of money,” because I couldn’t. I just couldn’t figure that out. Now, knowing that there’s always that change. There’s always new things happening, suddenly and it’s not suddenly, but now I have a young adult and so we hear about transition, transitioning youth, how do you do that? I have a 19-year-old but I’m not prepared for what to do next because just getting through middle school, getting through high school took everything that I could do. I know they said it’s coming. You have to start when he’s 14. I didn’t get that until he was 17 and so it’s hard. It still gets hard but being able to back up a little bit and figure out, what are the new resources that I need? I have to find maybe a new set of parents. We’re the parents of really young kids. We had an affinity.

Tammy: Right.

Suzette: I would look at parents of teenagers, I was scared of that.

Tammy: Oh sometimes it’s terrifying, right? When your kids are little. You just want to focus on that one thing at a time, absolutely.

Suzette: Yes, and you look at parents of teenagers and young adults and it’s like, “Oh my God, how did you do that? I don’t want to go there ever,” and you’re going to get there.

Tammy: Right. Absolutely. As you’re thinking about your journey in helping your child, can you think of one particular thing that’s been really challenging, was really difficult, that just didn’t work and you wish could be different?

Suzette: This is going to sound really weird, but listening to him. What I mean by that is, sometimes, and this has been forever, he will tell me what he needs but I’m not hearing it and I’m not hearing it because, oh I don’t know, I’m focused on one thing or another. When I stopped and really listened to what he’s saying, we do better.

Tammy: Right.

Suzette: When he listens to what I’m saying, so it’s like communications piece there.

Tammy: Absolutely.

Suzette: Here’s the hardest part, I’m not very good at it. I communicate professionally but with my own family, I was like, “Wow.” I really have to take it down to basics and give myself permission to make mistakes. That’s the big one.

Tammy: That’s a good point. I think that’s true for any parent, right?

Suzette: Yes.

Tammy: Communicating especially with the teenage kids is hard. It’s challenging, I think, for all of us.

Suzette: Yes and you have to learn how to reset boundaries and you have conversations, and when and if they get a driver’s license, it’s a whole different world. It’s really exhausting.

Tammy: My stressor have just opened up when you said that because that’s what’s in the next couple of years for us, the whole driver’s licensing, yes.

Suzette: It has been an amazing journey and I’m just watching the young people that I know develop and grow, it’s just so exciting.

Tammy: In thinking about getting your child help, what’s worked well? What has been one thing that you’re just so glad things were aligned and worked out well?

Suzette: Well, we had an experience and it was a school related experience as a senior, a high school senior. His depression was so acute. He spent the last two or three months in bed and was not able to even shower or to mention anything and he failed. He wasn’t able to graduate and having that conversation with the school around that, I was empowered.  One of the vice principals basically said, “You know, you’re lazy.” I just took a breath and I said, “We need to talk,” because there’s something called lived experience and I have never used that word before but I heard it and  all of a sudden, “Oh my God, I have lived experience and I have a thing too,” so I’m coming and I have something. I was able to really put the context. We’re talking about behavioral health diagnosis. We’re talking about mental illness, brain chemistry. This is not being lazy. If you had any idea what he does to just survive, I don’t know that any of us could do that so it’s not lazy.

Tammy: Right.

Suzette: That was very, very helpful to me. Really clear in my own mind that we all need to be on the same page, so that was super helpful.

Tammy: Absolutely.

Suzette: Yes.

Tammy: So good for your son to hear that, “No, you’re not lazy and I know you’re not lazy,” I think it’s important. That’s great. We ask this of everyone because we recognize, as we were just saying, as you pointed out, this is different from moment to moment for all of us, but at this moment, are you swimming? Are you treading water? Are you drowning? Where do you feel at this moment?

Suzette: That’s really good question; all three of those, yeah, yeah.

Tammy: That’s a good answer.

Suzette: All three of those. All three at the same time and it’s so hard to manage that, but really I have kind of like a low grade. It’s not a panic but it’s a low grade like, “Help,” because it’s all really hard.

Tammy: Right.

Suzette: I feel like I have good resources and good support so I’m going along okay. I guess I’ve been doing this for so long that my new normal is not what anybody else’s normal is.

Tammy: Exactly and I think that’s what’s really important is you get to a point where this, I can function at this level, even though the average person would be falling apart and maybe we fell apart when that was first our experience. That’s why I love what you said about your child, because I think we often see someone who’s struggling to get out of bed or struggling to go to school and people will say things like they’re lazy or say that someone is anxious so they’re just scared all the time or what have you. The truth is with their condition, they are like super-power to do what they do every day. There are more courage than most people just to do what they’re doing or more strength on going, fortitude to go get something done. I think we just need to give people credit for what they’re doing and I’m in that for them. I love that you said that earlier too.

Suzette: I think it’s struggle that we constantly revisit. I don’t know if anybody else’s have this come out of their mouth, but I’ve done it on number of occasions; “What’s wrong with you?” I don’t mean to say it. Oh my God. I said it once and he turned to me, he says, “Do you really need to know? Would it be easier if I was on a wheelchair?” I thought, “Oh my God. I’ve even said this to other people and I myself am saying this now?”

Tammy: Right.

Suzette: So it’s constantly guarding and learning and checking and remembering.

Tammy: I think that’s a really good point because most of the people we’re interviewing here, they have a child with a life-long condition, right? If you have a child in a wheelchair with a life-long condition we don’t say, “Well, why is it we don’t get up today?” After ten years of being in a wheelchair, right? But we do that.

Suzette: Yes.

Tammy: We do that all the time and I know I’ve done it and actually, when my child’s teachers or family members have to say, “Why is he doing this now?” I’m like, “You know this has been a condition all this time.”

Suzette: Yes.

Tammy: I think that when we’re asking that, what we have to do is sit back and go, “What is it about this moment that I can’t handle?” Because this is our normal, this is our situation.

Suzette: Yes.

Tammy: I’ve imagined that if you do have a  child in a wheelchair for ten years, there might be some days you can’t take it, but you would recognize, “My child’s circumstance hasn’t changed. I’m just having hard time handling it today.” We need to be able to do with mental health and say, “My child’s has the same condition but today it’s really hard for me to deal with.” Did that make sense?

Suzette: Absolutely.

Tammy: I love the comparison that you make there. I think it’s important.

Suzette: Absolutely, it is. You’re absolutely right. Then to give our kids the language to know that, and when he checked me on that as he often does with words that have come out of my mouth, he responds and like and I’m learning constantly from him especially when it’s difficult. He has a sleeping disorder and he goes nocturnal. He also has separation anxiety so when I’m away from him as I am now, he gets very tense.

Tammy: Right.

Suzette: He called me at 7 o’clock this morning which was four and I just checked him 15 minutes before we started and he hasn’t slept yet. I’m very concerned about that and what the household is like and what the stress is like, but you know, it’s just a day.

Tammy: It’s just a day.

Suzette: It’s just a day.

Tammy: Yes, absolutely. What is your self-care routine or as we say with more appropriate, survival technique, because sometime that’s what it comes down to too, right? How do you take care of you when you’re in the middle of all of this because as we’re saying, it’s not always possible to do what we’d like to do so what do you do?

Suzette: You know what? My go-to place is the bathroom.

Tammy: Yes.

Suzette: Sometimes it’s not real safe if there’s pounding or screaming on the other side of the door but if I can get to a place where I can just be isolated and I usually turn the lights off and I just breathe. Just for a minute.

Tammy: Right.

Suzette: Just for a minute and then go back out and I can do that at work. I can do that at church. I can do that at lunch[?], so you can do it anywhere. That’s one thing if it’s a crisis and I just need to step back. I swim and when I’m lucky, I swim in the ocean. I do that regularly.

Tammy: Oh, I’m jealous.

Suzette: I swim with mom.

Tammy: That’s sounds wonderful.

Suzette: She’s a good swimmer. She’s been swimming for years. When I have a chance I get in the water and it’s really wonderful.

Tammy: That is wonderful. That is great. Another question I’d like to ask, because any parents has some of this, right? Kids keep us laughing. What’s your most laughable moment? What makes you laugh or smile when you think back to your experience with your child?

Suzette: Oh my gosh. My son is a professional magician and when I watch him engaged with other people, I mean it’s amazing when you see grown adults going, “What happened? How did that happen? Oh, my God.” It’s just makes me chuckle because he has such a gift to be able to do that, but he does it because he likes to bring joy to people, right?

Tammy: That’s wonderful.

Suzette: So he’s a champion. He’s a knight in shining armor and he loves to bring joy to people and that makes me smile.

Tammy: That has to be fun. You get to enjoy the magic but you also get to be proud of this amazing kid.

Suzette: Yes.

Tammy: Or adult now but always a kid, right?

Suzette: Yes, always a kid. Yes, definitely.

Tammy: That’s awesome. Thank you so much for sharing your story with us.

Suzette: You’re welcome. Thank you for asking.

Voice Over: You have been listening to Just Ask Mom. Copyrighted in 2018 by Mothers On The Frontline. Today’s podcast host is Tammy Nyden. The music is Old English, written, performed, and recorded by Flame Emoji. For more podcast in this and other series relating to children’s mental health, go to mothersonthefrontline.com or subscribe to Mothers On The Frontline on iTunes, Android, Google Play or Stitcher.

[end]

Shanta, Mother, Clinician, and Advocate Shares her Story, Ask the Advocate Episode 4

logo: purple lotus flower with white figure inside holding arms up on black background

In this episode, we listen to Shanta, a mother of three, clinician, advocate and proponent of self-care. She discusses raising a daughter who struggles mood disorder and suicidal ideation.

Transcription

[Music plays]

Voice over: Welcome to “Ask the Advocate” where mental health advocates share their journey to advocacy and what it is meant for their lives. “Ask the Advocate” is a Mothers On The Frontline production. Today, we will listen to Shanta, a mother of three, clinician and advocate. This interview was recorded at the 2017 National Federation of Families for Children’s Mental Health Conference in Orlando, Florida. During this particular recording, you can hear music and noise in the background from another event at the hotel. Please don’t let these noises distract you from Shanta’s story.

Dionne: I want to say thank you very much–

Shanta Hayes: Thank you for having me.

Dionne: — for agreeing to the interview, especially, on the spot. Would you like to introduce yourself?

Shanta: Hi. My name is Shanta Hayes. I’m a MSW, a mother of three, an advocate and proponent of self-care.

Dionne: Oh, proponent of self-care. We have to talk about that. So, Shanta, tell us a little bit about your advocacy journey. Your mom-advocate journey.

Shanta: My middle daughter is 14 years old and we started noticing some things that were just not quite right or on par with her developmental milestones. And so, we took her to the pediatrician. “Oh, everything is fine and it’s well within norms.” And it was well within norms for a while until it wasn’t. And then it started to manifest itself behaviorally. But what we found out eventually was that she has a diagnosis of ADHD and major depressive disorder. Her diagnosis have led to some challenges in school for her and that’s how we first noticed it. We noticed she was having trouble getting her homework done and she was having trouble sleeping. She was having trouble just understanding the material and we thought, “Whoa! What’s going on?” So, we’ve moved from a diagnosis of ADHD and major depressive disorder to now. We also know she has some processing issues. So, after we visit the psychologist and we’ve done all the testing, it’s like, okay, she has some working memory issues and those things aren’t necessarily solved with medication or behavior plans. So, we’re now going to the neurologist and checking with the endocrinologist to make sure it’s nothing hormonal. But the thing is my advocacy journey is always making sure my child is first in knowing, letting her know that we will put her needs first but that we’ll also take into consideration how she’s feeling. So, therapy– we go to therapy for the depression. But she’s not a fan of talk therapy. So, we’re looking at other therapies now. It’s like, okay, drama therapy, play therapy because those are modalities that she’s really interested in. Because I need her to know that even though I’m the one making– setting the appointments, she’s the one going to the appointments. And if she’s not engaging in one way, we need to find a way that works for her. So, we talk to her and we ask her, “What do you want to do? How can we make this work for you?” So, I’m letting even my 14-year old child know that her health is in her hands.

Dionne: This is the self-care advocacy.

Shanta: So, I need her to be an advocate for her health. I want her to know that she has a say I think a lot of people don’t take that into consideration. I think we try and force a lot of different therapies or medications on our children and we’re not really listening. We need to be very aware of how we allow them to engage in their own medical mental health. So, that they don’t develop a sense of “I have no choice in this process”. And that’s how we work with her.

Dionne: So, you said you have a MSW. Did it precede or did this come along with your journey with your daughter? First of all, tell me a little bit about who you were before you became mom or what you do outside of being mom.

Shanta: Let’s see, mom is my first job. That’s my first job. I was one of those young ladies who took the 50’s track and now is schooling MRS . So, for those of you that don’t understand, I’m in school and I got married, right after. I started a family. And I was fine with that. I love being a mom. I love baking. I love taking my kids to the park. I love being their first teacher. We divorced a few years ago and I said, “Well, I get one degree but can’t really do anything with it.” I like history. I don’t want to teach. What can I do? And I’m really good with people and I learned that I was really good with people because as a mom, I was a part of a group called Mocha Moms, which was a support group for stay at home mothers of color. I was a Girl Scout leader. I was on the PTA. So, I’m constantly engaging with people and connecting them to resources. That’s what social workers do. I just happen to like to solve problems as well. So, clinical social work, being a therapist was my interest. So, everything happens in time. I believe that and my going back to school and my daughter’s diagnosis escalating coincided. So, it really came to a head, as I was in my advanced year placement at a psychiatric facility and I worked on an adolescent girls’ unit and my daughter’s behaviors were spiraling and we had to hospitalize her. So, being a clinician, working with adolescent girls and going home to an adolescent girl with her own issues was very challenging. But it also gave me some tools that a lot of other parents might not have had and some insight that you definitely don’t get. Like these are things that should happen when you have to ten-thirteen your child.

Dionne: Would you tell us about that? If you want to share, I’m just–

Shanta: So, the behaviors had gotten to a point where she was a harm to herself. And a psych nurse deemed it necessary to hospitalize her. And even though I felt I was technically trained and capable of handling this responsibility, I had to consider, it’s not just what I can do. She has two siblings at home. This takes a toll on your whole family. That’s a great deal of emotional stress. So, I took her to the Children’s Hospital, had her evaluated. They deemed it necessary. They transferred her to a facility. So, at the facility, they do stabilization. They do an assessment. They evaluate. The things you don’t necessarily think about are the outside factors, like who is outside your immediate family and do they really need to know? And how will they react? Because that was what we came across. My daughter was hospitalized around her sister’s sweet 16 and we had planned her party and family members are coming but our daughter wasn’t going to be there. So, we had some backlash and that was the time where it came to be, I know you mean very well. However, my job is to look out for the best interest of my child. And she could not be here today because she needed to take care of herself or she needed to be taken care of.

Dionne: And again the self-care. That’s a wonderful way to talk about this too. Self-care.

Shanta: It is. They have to recognize that you cannot say what she would have done in the situation because it’s very challenging. Like I said I wanted to keep her home but that would not have been in the best interest of other parties because I don’t want them to be stressed. Now, yes, it’s hard to know your sister is in a hospital. But it would be harder thinking, did I put away all the knives or did I put away all the medications or jump ropes because these are the things that we had to consider. Like, okay, because her thing was hanging herself. And that was the scary part because we think, she had a plan. My child had a plan. And she had means and she had access. So, if we don’t think to ask those questions, we might brush it off as it– she didn’t feel well. She’s down. She’s depressed and we still don’t take depression very well in communities of color. So, we did have to remove all items that might be a means to her. But I’m very glad that her time in the hospital, she was like, I really don’t– she’s– I really don’t think they did anything for me. But that was because the modality they used is not one that works for her. Talk therapy does not work for her. So, in the hospital where I worked, I used to play therapy a good deal with my clients and I had clients as young as 6 years old. So, sometimes that might be the best thing you can do is to just sit and play and observe and question. But I’m also a big proponent of bibliotherapy. Using books and stories to engage a client. So, that’s why going back to earlier, we’re looking for other methods that will suit her because I need her to see like, if one thing doesn’t work, that’s fine. We can try something else. There are lots of different things we can do. But we can’t do is we can’t stop.

Dionne: That’s important.

Shanta: So, yeah, I’m all about being mindful and taking a break. Breathing, being in the moment. But you get– you take that breath and keep going.

Dionne: So, in all of these different therapies in this journey with your daughter and then also– I mean having this background which is such a rich and important background, if you could pretend that you’re talking to and you can fill in this blank with “teacher”, “family members”, “church members”, if you go to church, “community members”, doctors” –  and if you could pretend that you’re talking to them, person or a group, what would you want them to know about your experience? You. Your experience parenting a child with a mental health challenge?

Shanta: I don’t typically tell people what I do just on meeting them. But I would like for people to approach me with the compassion that they would any other person of a parent going through a trauma, because having your child committed produces trauma because the mommy guilt that most of us feel sometimes is very real. If immediately you begin to question, what did I do wrong? Oh my gosh. Did I have one drink while I was pregnant? Did I go to that restaurant where they allow smoking? Did I not go over her ABC’s enough with her? Did I not check that fever when she was six months old? It can eat away at you and you question like the very– for me, the very core of who I am, which is being a mother. That is– I tell my children, you are my first job. You are my first priority. I’m going to do my very best to make sure you are able to take care of yourselves when you leave here. However, this thing right here is causing me to question whether I did my job right in the beginning.

Dionne: Exactly.

Shanta: So, please address me as someone who’s just having a challenging day. That’s why they say, you never know what someone’s going through. So, if you just treat people the way you want to be treated, I’m sure most of us want to be treated kindly, we’ll be okay.

Dionne: Yeah, that’s so true.

Shanta: And please, treat her the same way because she’s a very lovely girl. She has a beautiful soul. She’s so kind and very loving. But she goes from zero to 100 and point 1. And it’s just like uh! But that’s because she has a mood disorder, she can’t control that. And sometimes, medication, people saying, “Oh, you’ve medicate–” please don’t judge me for medicating my child. Do not judge me for doing the thing that my child needs because not every herbal supplement is going to get the job done. Not every behavior plan is going to work for her. I’m telling her to go to sleep earlier. It does not work because she has sleep issues. You know what I’m saying? Exercise. When you have anhedonia, which is a lack of desire to do things that she used to enjoy. I’m sorry. It’s not going to happen today. We got to take baby steps. So, please don’t judge me that I have medicated my child. And if you do, keep it to yourself.

Dionne: I like that. Keep it to yourself. Keep it to yourself. So, what has been the most difficult in the past in trying to get help for your child?

Shanta: Even as a clinician, not really knowing all the resources. And I know a lot of resources but not knowing all the resources that are out there that can be helpful. But again, sometimes that mom guilt really, really gets in the way. And that keeps you from saying, “Okay, this is not about me. It’s about her. So, let me ask for this resource.” Or not recognizing what a resource actually is. So, my daughter has 504 which is great. That’s a medical impairment form. She can get coverage and services at school. Different accommodations to help her in the classroom. And IEP recognizes that my child has a disability which gives her more coverage. So, you’re thinking, “Oh, IEP–” they were like, “Oh yes, we’ll put her in special ed. and we’ll have an extra teacher.” But that protects her when she goes to college, that protects her further in high school. That does give her access to additional resources. That says, if she’s in a program and she’s having some behaviors that are challenging and causing maybe some issues per her IEP, you cannot put her out. I need you to work with her. I need you to follow this educational plan that we have in place. So, she continue to be here and receive the services because what we fail to see is people implementing the resources that they have. So, we don’t use what we have properly. And we allow our children to be circumnavigated in taking all of these different ways. This is really not beneficial to them when the tool the you had works really well, if you know how to use it.

Dionne: So, if you can name one tool, because you name the IEP and the IEP works. And I love when you said that not everything works for everybody and there’s so many different things you– so, if you had to think of one tool that you could say, this was the moment that’s like, this is working. This is good.

Shanta: So, let’s see. She does– currently, she utilizes her 504 mostly. We haven’t had to say, “Look, this is IEP level stuff.” Her 504 works for her and 504 work for a lot of youth. Her 504 has accommodations such as she can have extra time on her homework. She can get an extra day on her homework or she can get extra time on testing, regular testing and standardized testing. She can test in a small room. She can test on the computer because my child, due to her processing issues, works better on a computer then with pen and paper. Now, granted, we’re all moving away from pen and paper, but there are still some environments where they do it and it’s like, “Look, this is what has been told to me, my child is good at. I need you to look at her strengths and work there.” And I think we fail to sometimes recognize that even children with mental health and behavioral issues, they have strengths, we overlook those because sometimes the behaviors are so escalated, there’s just– I cannot take this anymore. This behavior is driving me bananas. Please, always look at your child’s strengths. Remind them who they are and how awesome they are. My daughter, I have a WiFi password and I’m like, what is this password? And she’s like– I’m like, really? Because all the pound signs and the lower case letters and the underscore, I’m like, really? But okay, you are awesome. And don’t put it on what is wrong, it’s “you are awesome. You remember that? I can’t. That’s great. You fixed the computer? Wonderful. Because I just sat it over in the corner and went and bought another one. So, if you did that, please remember that you took the time to go in and look at the system and figure out what the issue was and you work through that process. And you made it correct. You can do that.” And so, we relate to their strengths. And we relate them back to how they can manage their own care.

Dionne: That’s important. That’s so important. Speaking of self-care because I know when you said, your self-care. So, tell us right now, are you swimming? Are you drowning? Are you treading water?

Shanta: I never tread water. I’m horrible at treading water. Like in real life, I’m like just going through a crisis. I suck at treading water. I float. And that is my preferred method.

Dionne: Tell me more about floating.

Shanta: So, actually, it’s my one of my self-care methods. I go to the pool and I just float. And it is a time where I’m literally just weightless and I don’t think about what’s going on. I look at the lights in the ceiling or I close my eyes and I just lay there and let it all go. And sometimes, we really have to realize, we can’t carry all of this, anyways. We just need to sit it down somewhere and let it go for a little while. So, being in the pool for 30 minutes, that’s my self-care, really. Like on days, when I really need to work something out, then I’ll swim and I usually do a crawl. But that’s– I mean, most of us are swimmers, except my one child. [Laughs]

Dionne: And my son is not.

Shanta: She’s like, “No, I can’t do this.” But swimming is my preferred method of self-care just because I find it so relaxing. I think treading water is a lot of work and when you’re trying to get through something, you want to try and let go of as much as possible. You want to purge all the unnecessary weight. You just carry what you need. And generally, we find what we need is going to be inside of us because a plan is always in our head. We don’t need extra papers or notebooks or bags to carry a plan. Because when the plan is necessary for the foundation or the benefit of your family, you’re going to hold that in your head and in your heart. We let all the rest sort of it go.

Dionne: That’s a good point.

Shanta: But I love to swim. I love a mani pedi, too. I’m not going to lie.

[Laughter]

Shanta: I like to be pampered. But I think that we must also recognize that sel- care doesn’t really have to cost. Meditation is a great way to take care of yourself. I write notes to myself. I write notes on my mirror. I have a current message on my mirror, “You are a great partner worthy of love.” Because we need to remind ourselves sometimes. And sometimes when you’re working with other people and it seems like there’s so much going on, just a simple reminder is nice. I do aromatherapy.

Dionne: Yeah, I saw you– like perfume. [Laughs] Aromatherapy.

Shanta: That was like [makes a sound].

Dionne: [Laughs]

Shanta: So, I make my own like linen sprays. I do a nice lavender linen spray that I spray on my bed when I change my sheets. Before I get into the bed. [Laughs].

Dionne: I like it. I love aromatherapy.

Shanta: Yes. Peppermint. I did a peppermint and eucalyptus one, just for like a refresher and it helps too with memory. So, I’m like, [makes a sound] and walk into it. It uplifts and kind of invigorates so you can go off and do your thing and you smell good.

Dionne: Yes.

Shanta: [Laughs]

Dionne: On top of it you smell nice.

Shanta: Yeah. And it doesn’t cost a lot like– and I bake.

Dionne: I want to come to your house.

Shanta: Yeah, I bake a lot because baking makes me feel good and then the people I give my goodies to, they feel good, too. Cakes and brownies and cookies and stuff.

Dionne: So, I know this is part of advocacy. This is– this– we’re at the National Federation. And most of us are advocates. Is there an organization, a particular group– I see you have a thing here that you want to talk about or give a shout out to.

Shanta: Well, I work with the Younger Years and Beyond, which is a federation chapter. And I’m very excited about the work with them because I don’t work with the younger years. I work with the “beyond” part.

[Laughter]

Shanta: So, and that’s very exciting to me because while catching, intervening early in life is great. I mean we absolutely have to be a net for our adolescents. We really have to show them how to care for themselves, how to advocate for themselves, how to be mindful of what’s going on with their bodies. And adolescence is a very challenging time. So, just being an educator and helping out through Younger Years and Beyond is really just a privilege because I get to help, say, how can you identify the things that trigger you. How can you identify ways to ground yourself. How can you talk to your psychiatrist or your psychologist. How can you let them know what you need. So, helping young people advocate for themselves is really important to me. So, I’m very excited about that.

Dionne: Well, thank you so much for participating and sharing all your wisdom and focus on self-care and self-care techniques, real self-care techniques with us.

Shanta: Thank you.

Dionne: Spending some time with us while we’re here. I really appreciate it. And I know everybody who’ll be listening will appreciate it, too.

Shanta: Thank you.

Voice over: You’ve been listening to Ask the Advocate. Copyrighted in 2018 by Mothers on the Frontline. Today’s podcast host was Dionne Benson-Smith. The music is “O”, written, performed and recorded by Flame Emoji. For more podcasts and this and other series relating to children’s mental health, go to Mothers On The Frontline or subscribe on Apple podcasts, Android, Google Play or Stitcher.

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