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

[music in background]

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]

 

 

Just Ask Mom, episode 17: “It doesn’t have to be this way”

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

In this episode, we listen to Melissa, a mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and may be triggering for some of our audience. (See below for transcription.)

Suicide Resources:

The National Suicide Prevention Lifeline is 1-800-273-8255

The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals.

Trans Lifeline – Trans Lifeline is a national trans-led organization dedicated to improving the quality of trans lives by responding to the critical needs of our community with direct service, material support, advocacy, and education. Our vision is to fight the epidemic of trans suicide and improve overall life-outcomes of trans people by facilitating justice-oriented, collective community aid.

The Trevor Project – The leading national organization providing crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer & questioning (LGBTQ) young people under 25.

You Matter -This is a safe space for youth to discuss and share stories about mental health and wellness, created and administered by the National Suicide Prevention Lifeline. You Matter blog posts are written by a rotating Blogger Council of individuals between the ages of 13-24 that are passionate about suicide prevention and mental health.

 

Transcription of Just Ask Mom, episode 17

(0:00)

(music fades in)

Woman Speaker: Welcome to the Just Ask Mom podcast where mother share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today, we will listen to Melissa. A mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and maybe triggering to some of our audience.

(music fades out)

Tammy: Hello. Can you tell us a little about yourself before or outside of parenting, what do you love? Who are you?

Melissa: My name is Melissa and I’m a mom here in rural Iowa. I farm with my husband in a small community. I love the environment. I love watching our children grow. Just being outdoors, reading, that kind of thing.

Tammy: You like watching lots of things grow, it sounds like.

Melissa: Yeah.

Tammy: That’s awesome. I want you to pretend that you’re talking to peers of kids that are going through mental health difficulties and their parents. What would you like them to know about your family’s experiences?

Melissa: I would say that our experience as parents with a child with debilitating mental illness – would be to just maybe ask, be inquisitive. Try and find out, not in a nosy type of a way but just– so maybe you can learn a little bit more about the situation and not just shut the doors essentially because it’s very challenging on a daily basis. When you’re feeling the doors slammed by parents or peers that don’t necessarily know the story, it just makes life that much harder.  (2:00) My child has a lot to give to this world. He’s beautiful and he’s kind but he just struggles with certain things. But I think his life as a youth could have been much easier if some closed doors would have remained open.

Tammy: You bring up a really good point because a lot of times, if our children are sick, let’s say if they have a physical illness or the measles or what have you, people would naturally say, “Oh, how is your son doing?” Right?

Melissa: Right.

Tammy: They would naturally ask. Maybe people are afraid to ask us or talk to us. They shut down or shut us out sometimes. Is that right?

Melissa: Yeah. I would say that. I know it is not the exact same thing but I spend a lot of time thinking about it. I kind of wonder if on some level, it’s how people who are diagnosed with AIDS in the 80’s feel.

Tammy: Yeah.

Melissa: So instead of feeling that love and that warmth when they were diagnosed with something. They were judged and I feel that very much in the mental health space here. In a lot of ways, it’s how the kids and the patients are treated. How many cardiac patients or cancer patients do you know that need to go from one doctor to another? And they’re transported in the back of a sheriff’s car in handcuffs.

Tammy: Exactly.

Melissa: That’s how they’re transported.

Tammy: When they’re most vulnerable and in the most pain.

Melissa: Right.

Tammy: Right.

Melissa: They’re actually taking– yeah. They’re handcuffed. I know my son had a really hard time one time because he didn’t even have a seat belt on so that gave him anxiety. The person was driving and on his phone. I think you just feel very out of (4:00) control, anyway; when you have something like this.

Tammy: That’s a really good point. Even when you think about all the years, all the trying to help your child, what has been a barrier to getting the help your child needed? Something that– it’s a barrier or just didn’t work.

Melissa: His situation is very severe. I think some of the barriers that exist are constant therapists that are a good quality. When you’re living in a small space, people come and go. There’s a high burnout rate.

Tammy: So consistency–

Melissa : Consistency

Tammy : — really no consistency.

Melissa: There’s a very little consistency but I would say the same thing even with psychiatrists and getting meds. Because currently, the situation is now he’s an adult, and in the acute care setting you go into the hospital and– he has severe depression. We’ve been in and out of the hospital in an acute care setting maybe thirteen times in the last eight years and in the last six months probably five or six times.

Tammy: Wow.

Melissa: The problem is that continuity of care because you go into an acute care setting and his is suicide; just not wanting to live. You’ll see a whole new team of medical professionals and they’ll have an idea of what’s happening. He’ll go into another space and then they have their own idea and their own med recommendations. Unfortunately, for the patient you’re really not getting the (6:00) highest quality of care. I will say that our experience in the last six months has been even more challenging because he went to a hospital in Central Iowa. When I got there, they had actually prescribed him a medication that he had overdosed with.

Tammy: Already before they prescribed it?

Melissa: Right.

Tammy: Oh.

Melissa: But now that he’s an adult, I’m not given all of the information and so he was discharged with 90 pills that he had already OD’ed on as a youth. Two weeks later, he OD’ed on them and ended up in that same ICU. When I talked to the behavioral health staff, I said, “Did you look at his history?” She said, “We’re not required to do that. That’s not something that we automatically do.”

Tammy: That’s shocking when you think about.

Melissa: Well , And my reply to this person was, “Well, okay. So, if I came in here with a cardiac problem–”

Tammy: Yes.

Melissa: “–or you know some other chronic issue, would you not look at maybe some of my past history; even meds, anything? Just to make a better and more informed choice.” She said, “Well, on this floor, we just don’t do that. It’s not our policy.”

Tammy : Oh–

Melissa : In Iowa, we’re facing a really challenging time getting access to care maybe more so that other states. But — I just looked at the woman and I just said– no things have changed and we are seeing less and less help. I can see the acute care institutions are overwhelmed.

Tammy: Absolutely.

Melissa:  They are completely overwhelmed – but I looked at her and I just said– I think what I’m hearing is now these people don’t have access to chronic care –  which they don’t as an adult. (8:00) Currently the situation is that these people who are the most vulnerable are now going to you for an acute care setting, which is also very limited. We’re not even giving them that quality of care.

Tammy: But then even afterwards there’s no sub-acute to keep them well. They just send them up right back into acute again.

Melissa: Right. Right. Or discharge them and refer them again to outpatient services.

Tammy: You mentioned something that’s really important and you’re at that key point, you could speak to it. You dealt with it when your child was a minor and now he’s no longer a minor and your role shift whether you want it to or not, right?

Melissa: Right.

Tammy: Can you speak a little bit to that? When your child, well this differs too because sometimes it’s even 12 when they say now the kid gets to have more input but —

Melissa : Yeah. Yeah.

Tammy : – at least when you’re the mother of a minor child, you can tell the doctor, “Make sure to remember this. Remember this.” But you don’t get to do that anymore, do you? How does that work?

Melissa: You don’t get to do that. In fact, at this facility that I was just talking about, once this discharge happened. I wanted to talk to the psychiatrist. I said, “Okay. This is the second admittance. This is what’s happened and it doesn’t sound like you have all of the information.” And I’m like, “I would love to– just like a five-minute conversation to make sure that you have the entire picture to give you history.” He wouldn’t even talk to me. When you’re dealing with a young adult, I personally didn’t want to take away all of his choices and make all of those choices for him, but I did feel I could at least make sure that the physician heard the story and had all the pieces to make a more informed decision. Now, moving into adulthood, (10:00) I would say it’s much harder because you’re hoping that your mentally ill child is now providing them with all of that information.

Tammy: But how can they do that when they’re in crisis themselves? It’s an expectation that seem so unfair that the system places on that person.

Melissa: Right. Right. Because of laws and things, common sense doesn’t often times trump some of those things. My kid is smart. He’s been in a PMIC twice. He’s been in an acute care setting at least a dozen times and so he knows what a psychiatrist wants to hear.

Tammy: Right.

Melissa: And he doesn’t always want to be there. He can use those words to just get discharged.

Tammy: Right. For those who don’t know in Iowa a PMIC is a Psychiatric Mental Institution for Children  – because in different states it goes by different names, like  residential long-term care.  – So he knows what would to say, he knows how to play the game.

Melissa: Right.

Tammy: Yeah.

Melissa: Yeah.

Tammy: What has worked in getting help for your child over the years? Is there something that was helpful, that would be good if there’s more of that? Is there something along the way that you thought was positive?

Melissa: I wish I had a lot of positive things to say today, I don’t.

Tammy: Yeah. That’s a reality sometimes.

Melissa: I just don’t.

Tammy: Yeah.

Melissa: I think — I think I’ve actually seen a decline in the quality of care in our state over the last ten years.

Tammy: It’s so discouraging.

Melissa: Yeah.  I think — When we had our first experience with the PMIC, that residential care for youth, the average stay was 10 to 15 months. Because of insurance and privatization of insurance and things like that, his (12:00) second stay was limited to I think six months. Even in month like two or three, they were trying to push your child out the door. A lot of kids could really use a higher quality of care, just a little longer period of time. In my son’s experience,  he was discharged quickly enough that he didn’t have time to test some of the medications, like an anti-psychotic that is pretty severe, and so they did that after discharge, because insurance tried to get him out the door. It just so happened that he had one of the life threatening reactions to the medication

Tammy: How frightening

Melissa: Yeah, he went into a cardiac arrest type of a deal. But that does not have to happen.

Tammy: No it doesn’t.

Melissa: That does not have to happen. He doesn’t have to have the means to commit suicide because they choose not to look at his health history.

Tammy: Right

Melissa: Right.

Tammy: And just to have the safe  place to do those med changes for this kind of severe case is imperative.

Melissa: Yeah,  I mean we are not talking about Tylenol here. These are some really, really serious medications.

Tammy: So we like to ask this because in our experience, in my experience, it changes moment to moment. In this moment, where are you – are you swimming, are your drowning, are you treading water? How are you feeling in this particular moment?

Melissa: I love that this is a question on here because I often times refer to this as like you are drowning. You know not all of the times you get to breath, but that is really kind of what it’s like. People are saying why (14:00) are you not advocating a little more, why aren’t you taking more time to do this or time to do that, and most people don’t know what is going on behind the scenes.

Tammy: Right, that it takes all that strength just to get that gasp of air before you go under again.

Melissa: Right, yeah, I can barely get up, put on my clothes, and I have two other younger children that I am trying to get out the door and smile for – just, you know – yay – it looks like Pollyanna – but I think that is a really good way of looking at it. There are a lot of parents out there – and this is really, really challenging –  and when we look at Public Schools, there are  a lot of things that could very easily be changed to help parents that feel this way. Yeah, that is why I would really like this episode to go out to all of you who do not have children with mental health issues to just give it a second thought on how it might feel to be in our shoes.

Tammy: Exactly. So what do you do to take care of you? What is your self-care routine? Because what I am hearing is  – and I can relate too – is that that it takes everything just to keep everything running, just to keep going. Is there something you can do to take care of you, or, and it may be more appropriate what is your survival technique – how do you keep breathing (laughter) because that is a big accomplishment?

Melissa: Yes it is! It totally is. We have dance parties some nights – we crank up the music – that’s exciting – with our younger kids. I like being outside, we do things like that. But the reality (16:00) of the situation is that there is not a lot of time for self-care, which I know that is the worst answer of all

Tammy: But it is a real one.

Melissa: Yeah.

Tammy: Yeah. As hard as all of this is, I bet there is at least one funny story that you have that makes you laugh a little bit. It is hard to think of one, but is there something that makes you smile when you think about “oh my gosh that was ridiculous!” – even if it is not funny but it is so ridiculous that it is s so surreal  – like “yes that happened”?

Melissa: Tammy, I am in such a bad place, I cannot think of anything funny.

Tammy: That’s ok. You don’t have to.

Melissa: Huh.

Tammy: If you can’t that’s ok too, because I think we need to hear that. We need to hear that it is not always ok – because when we are in that place – I know it’s hard  for me to turn on the radio or the TV and only hear stories about “Oh, they overcame this problem and it’s so great and they’re doing this” and that is all you hear. So when we are in that low spot, it feels like we are not allowed to be there. But so many of us are there, so often and we just keep it quiet. It is ok if you don’t have something to laugh at right now, that’s ok too.

Melissa: yeah

Tammy:  I don’t think you are going to be the only at this moment who is like, “I can’t think of anything.”

Melissa: Yeah, I don’t know. The last few weeks have been incredibly challenging for our family. If we had this interview a month and a half ago, maybe I could find something wonderful. But, the mental health crisis in this particular state – it’s bad. Like I said, in six months he has been admitted to an acute setting six times. (18:00) This last time was because he took one of our vehicles Facebook Live to suicide attempt by trying to go off the road, and had he not unbuckled his seat belt, he would have died. We did a committal and advocated for him to be in this acute care setting longer. They discharged him with another out-patient referral after six days – which has been what has happened for the last six months. That is a lot and it is very heavy. So I am not feeling overly hopeful.

Tammy: What gets me when I hear this story and so many others like it –  no matter what this would be horrendous to live through – but it just seems to make it so much worse when we know it doesn’t have to be this way in terms of help. There is a way to help this, to help people stay safe when they are in this place. No we don’t have a cure for severe depression that we can just wave a wand and make it go away, but we could as a society keep people safe and loved, and families loved and supported – instead of stigmatized – we could do that

Melissa: We could that.

Tammy: We could as a community put our arms around people going through this and hold them up

Melissa: Right

Tammy: I think that is what makes this more painful. Is it doesn’t have to be this way.

Melissa: It does not have to be this hard. No.

Tammy: It would be hard no matter what, but it doesn’t have to be this lonely, it does not have to be this much of a struggle (20:00) to just get people to listen.

Melissa: Right.

Tammy: I want to thank you for your courage for speaking today so people can listen and can hear about what it is really like, because I think we don’t’s say it publicly enough so people can hear. Because it is awful, but it doesn’t have to be this way.

Melissa: No, it does not. No. My only happiness would be, I guess if I can find a laughable moment, is if you can find a group of moms and get together once a month and tell your stories to each other because I think you need that – and you will come up with some doozies. That has been helpful.

Tammy: Support is so important. Just to have someone to be there with you, that, I think,  is so important.

Melissa: It is, but I have even seen in our small community where I know a couple of moms facing things similar to me and they don’t have anybody. Like you said we just need to put our arms around each other and it can get better.

Tammy: Thank you for being here today. I really appreciate you sharing your story with us. I really wish you and your child and your family all the warm, healthy wishes to make it through this difficult time so we can laugh together next time.

Melissa: We will laugh. Thank you.

Tammy: Thank you so much.

(music fades in)

Women Speaker: 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 “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, Adroid, Google Play, or (22:00) Stitcher.

(music fades out)

[End]

 

Tank Mentality, Ask the Advocate Series, Episode 6

Photo of Tammy Nyden and John "Tank" Miller at the Federation of Families for Children's Mental Health Conference

In this episode, we  hear from John “Tank” Miller of Delaware. A Family Advocate and father of a 19 year old with mental health challenges, John discusses his mental health advocacy through social media and how he uses “Tank Mentality” to provide those with mental illness encouragement every day.

Become part of the Tank Mentality Movement:

Follow on Twitter @tankmentality 

Follow on Facebook: tankmentality/

Transcription

Female Voice: Welcome to Ask the Advocate. Where mental health advocates share their journey to advocacy, and what it has meant for their lives. Ask the Advocate is a Mothers On The Front Line production. Today, we will hear from John ‘Tank’ Miller of Delaware. A family advocate and father of a 19-year-old son with mental health challenges. John discusses his mental health advocacy through social media, and how he uses Tank mentality to provide those with mental illness encouragement every day. This interview was recorded at the 2017 National Federation of Families conference for children’s mental health.

[background music]

Tammy: Hello. So, we’re just going to begin by asking you to introduce yourself, and telling us a little bit about your advocacy organization, and what you do.

John: My name is John Miller from Delaware. I am a father of a 19-year-old with mental health issues. I’m here today to talk about my movement, Tank Mentality.

Tammy: Yeah, I love the name. Why don’t you tell us a bit about the name?

John: Well, about the name, the name actually was the origin of me, and that came from playing football. 9th grade year, I had a football coach who lined me up, and I was excited. I was just putting on pads for the first time as a high-schooler, and we ran a drill called Oklahomas. The object of Oklahoma is to not get tackled.

Tammy: Sounds like a good incentive.

John: So, I grabbed the ball, and the rest was kind of history. I ran through my whole entire team, and it got to the point where he was like, “Nobody can tackle you. We’re gonna call you Tank.” And, that’s when Tank was born.

Tammy: And how do you see Tank as transferring to mental health?

John: Because as a tank, you’re in the front line.

Tammy: That’s right.

John: On the front line, you’re going to take some punishment. So, on the front line, you have to have that armor. So, I incorporated Tank as far as mental because everything in life is mental.

Tammy: That’s right.

John: So, you can’t do a thing without thinking of things. So, it’s just was one of those things where I’m like, “You know what? This thing is bigger than me. And, it started with me, but it’s not going to end with me.”

Tammy: Awesome. So, tell us a bit how you got involved in advocacy, to begin with.

John: Well, I got involved with advocacy, it was something that I was naturally doing. To give you a little background about me, I work as a restaurant manager. Because being a manager as you know, you’re managing a bunch of teenagers and younger people, so you’re always molding young leaders, and you’re supervising them, but at the same time, you’re kind of like, as I say, growing them. So, I actually listened to a lot of their challenges, their stories, and seeing some of their strengths and weaknesses, and I was using my advocacy to help them better. And, it was just something I was naturally doing, and I had the opportunity to do it as a professional. It was just like a smooth transition because I’m like I’m already doing this.

Tammy: Right. I love it that though because you say that like that’s so natural. I’m not sure all restaurant managers are thinking of themselves and their role as developing young people. I think that’s pretty remarkable that you, even at that point, that’s how you were seeing it. I have to just point that out, I think that’s remarkable and wonderful that you took that on.

John: Well, that goes down to my upbringing. My grandmother put that into me as a young kid. I’ve always had that in my life, and she’s been a blessing to me. So, just listening to her and some of the values that she instilled in me as a young leader. Like I said, it was almost natural for me to transfer that on to other people because that’s what she believed in. She believed in helping others, and she would give her last to help someone else.

Tammy: That’s wonderful. And, I can see that it has definitely rubbed off on you, so that’s really great.

John: Yes. She’s my biggest inspiration. God rest her soul.

Tammy: That’s wonderful. Did you want to tell us a little bit about the kind of things that Tank mentality involves? Do you do programming or is it more an idea? How does it work?

John: Like I said, I have a business mindset as well. So, I am an entrepreneur and, being left-handed, I think outside of the box, so I’m very creative in some of the things that I do. I always wanted a brand. Nothing really stood out. So I was like, I had to find something that I could make personal because, you know, if you’re not passionate about something whatever you’re doing is going to fizzle out. So, when the idea of Tank Mentality came on, I didn’t even know how powerful it would be, but it was just like, “This is it.” I had a vision for it, and I started hash tagging it, then I would just put quotes up because I always do that. I believe in waking up and putting something positive into the world, no matter who it reaches. And, I just started hash tagging it. It became a baby, and I started watching it grow. Certain people were coming to me, and they would be like, “This is powerful, this is awesome, what are you going to do with it?” At the time, I didn’t know. So I was like, it was new to me as well. I decided to put it on a t-shirt, and I started wearing it. First, like I said, it was about me, I had it in my favorite color, of course.

Tammy: Can I just say this is an awesome orange?

John: Thank you.

Tammy: I love it. You just need like a little purple scarf, and then it’s like my ultimate ensemble because those together, I love.

John: I have it in purple, too. Maybe I could get you a Tank Mentality shirt.

Tammy: Absolutely love it.

John: So, when I said, I’ll put it on a t-shirt, and I started wearing it, like I said, I am the brand. People would ask me, “Hey. What’s that shirt?” and I would tell them my story, and people will just be in awe of the things that I’ve overcome.

Tammy: Can you tell us some of that story?

John: Okay, I’ll keep it brief because it’s very long. Growing up overweight, I had faced problems in being bullied, you know, teased, low self-esteem. It kind of put me in a position where I had self-doubt, and you know you’re great, but, you know, when people tell you otherwise, you’re like, you kind of have that doubt, you’re like, your self-conscious about yourself and your abilities. So, football was my outlet. Because, like I said, I could put on a mask, I had a helmet. And, I could go out and take some of that frustration out on my opponents. So, believe it or not, football saved my life, and it actually brought some peace to me because, at the time, I was a depressed kid, going through some issues. And around that time, my grandmother had gotten sick. So, the person that I looked up to the most, I would watch her slowly perish in front of my eyes. So, at that time, I was going through a lot. Like I said, football was my outlet, and I excelled on the football field. It’s just crazy how the world works sometimes.

Tammy: Right. When you needed something, somehow that came into your life, right?

John: Yeah. So, after football, of course, I graduated high school, and Grandma was still sick, and they didn’t want me to go away to a faraway college because my grandmother was sick. So, I went to a local DelTech, which is a local two-year-old school, I went there, stayed home and worked. Football pretty much was over. So, I had to find something that will take the place of football because that was my outlet. It was cooking and managing, bringing up other kids, and that was actually keeping me afloat because, at the time, like I said, I was going through depression, doubt, whatever that those things, whatever I was dealing with. Grandmother passed at ’99, but I made a promise to her that I will graduate college. I was the first person in our family to graduate college.

Tammy: Congratulations. That’s huge.

John: So, that was huge for me because it was like, I don’t know, it was like when your why is bigger than you. Like, you can do things outside of your mind. So, that’s the part Tank Mentality has started building because like, the things I was doing were not about me anymore. So, I graduated college, became a manager, was working, managing. I’ve been in management now for, I don’t know, say, about 15 years now. A lot of people actually came across in developing different leaders, and they’re going off to do awesome things, then come back two years, say, “Hey. I remember you helped me.” It just feels good to know that you have impact on other people’s lives.

Tammy: Absolutely. What I love about your story, and I love how you said that when your why is bigger than your you, right? Because, you know, even when you’re talking about the early days in managing at the restaurant for you, this is the same with a lot of children’s mental health advocacy. A lot of us get involved in it because we’ve had to navigate it, and when you turn from focusing on just navigating your own problems to helping others. It does give you so much strength, right?

John: Yes.

Tammy: I mean, it really feeds you, feeds your soul and it’s so powerful. I just really appreciate that you were so wise to figure that out so young, and give so much in the communities all along, all that time, because I think a lot of us don’t figure it out till later in life, so I’m really impressed.

John: My face kind of lies on me because I’m a lot older than I look. So, it was a learning process, and there was a lot of years that I kind of wasted playing video games and being depressed. So, that’s why, now, I’m so passionate because I know that I was not being used. I was being used to a percentage, but I was not giving my all.

Tammy: What advice do you have to someone who’s in the middle of it? So, they’re struggling. Like you’re saying, that moment when football was over, that was something you had. So, I think that’s really common. Whether it’s someone leaves high school, and the one passion they had is not available to them anymore. Or, an adult, when you enter adulthood, you don’t always have that built-in social network of school, right? So many reasons people make these transitions in life that all of a sudden, the coping skills I had are not available to me. What do you recommend to someone who finds himself in that situation? I mean, how do they adapt Tank Mentality? How do they figure out how to push through that?

John: Well, the first thing is identifying what drives you. If you can figure out what you’re passionate about or what you love, you can find your way because that will draw you into your purpose. My purpose was helping people, and it’s always been my number one. But, I also was blessed with many talents and many gifts. You have to find that balance where to, “Okay, I’m talented, but I’m not going to let my talents, whatever, stop me from my purpose.” Does that make sense?

Tammy: It does.

John: I’ll give you an example. I’m a photographer, I love to cook and those are talents that I have, but it’s like, I know that that’s not my purpose. I’m good at those things, but that’s not why I’m here on this earth. So, it’s like just finding what it is you’re most passionate about, and finding ways to put that passion out into the world because no matter if you impacted one life, you’re impacting two because you’re impacting that one person, you’re impacting yourself.

Tammy: That’s right. Thank you so much for sharing your story. Is there one last thing you just love to be able to say?

John: To that person who’s lost, discouraged, walking in shame, and just disgusted, I will tell them to never give up, to keep grinding, and that’s one of the messages on my shirt. No matter what, anytime you wake up, you have the opportunity. No matter what your mistakes were, your doubts were, your fears were, they are capable of being overcome. And, I’ve learned that failure is not really failure if you can take it and learn from it. Because I can tell you a lot of things that I actually tried, and they did not go my way.

Tammy: I think we all have a lot of those.

John: It is so easy to just quit, but now I’m looking at it like it’s harder to quit. Because I know that if I quit, it’s going to cause a ripple effect. Someone else is watching you for that grace.

Tammy: I love that because I think that you’re absolutely right. When other people are depending on you, it just makes you give it that much more, right? And so, to understand we’re all interconnected and everyone’s depending on us, I think just helps us in those moments, get up and say, “Nope. I can do this. I can be part of this.”

John: Absolutely.

Tammy: Thank you so much for sharing your story.

John: No problem.

Tammy: You’re a wonderful person, really. I’m very glad that you’re part of this world.

John: Awesome.

Tammy: Thank you.

John: Thank you so much.

Tammy: Thank you.

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Tammy: 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 Emojo. For more podcasts in this, and other series relating to children’s mental health, go to mothersonthefrontline.com.

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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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Fidelia’s Journey to Advocacy: From Incarceration to Family Advocate, Ask the Advocate Series, episode 1

In this episode, we listen to Fidelia from Northern California. Fidelia has three children: two sons with behavioral challenges and a 11 year old daughter with anxiety. She shares her journey of mental illness, motherhood, incarceration, and advocacy.

Transcription

[music]

Women’s voice: Mothers On The Front Line is a non-profit organization founded by mothers of children with mental illness. We are dedicated to storytelling as a method of both children’s mental health advocacy and caregiver healing. Our podcasts consist of interviews of caregivers by caregivers out in the community. This results in less polished production quality, but more intimate conversations rarely available to the public. Caregivers determine how they are introduced and the stories they share. We bring these personal experiences to you with the aim of reducing stigma, increasing understanding, and helping policymakers recognize and solve the real unmet needs of families dealing with America’s current children’s mental health crisis.

[music]

Tammy: Today, we start a new format for Mothers On The Front Line called Ask the Advocate. In this series, we hear from mental health advocates about their journeys to advocacy, and what it is meant for their lives. I am pleased to be speaking to Fidelia from Northern California today. Fidelia has 3 children, 2 sons with behavioral challenges and an 11-year-old daughter with anxiety. She also experiences mental health challenges herself.

[music]

Tammy: Hello. Tell us a bit about yourself and the kind of advocacy work that you do.

Fidelia: Um, well, I’m a mother of 3 children, 2 grown sons, and 11-year-old daughter. I’m a mental health advocate for Alameda County in Northern California.

Tammy: So, how did you become an advocate? What got you involved?

Fidelia: I had to advocate for myself and before I could learn to advocate for my children, I’ve been undiagnosed for most of my adult life. I got diagnosed at the age of 35 that I was bipolar, I had PTSD, and I suffered from severe depression. Prior to that, I didn’t believe anything was wrong with me. But so many challenges that I had on the day-to-day basis, making good decisions, healthy decisions, became overwhelmingly just non-existent. I kept ending up with really bad results no matter what I chose to do, and I didn’t understand why, and it was continuous. And so, I started to self-medicate, pretty much just, you know, didn’t know what to do, I just knew that there was nothing wrong with me. My daughter was taken from me twice. Finally, I was just like, you know, there’s got to be something wrong here because it doesn’t matter what I do, nothing’s working out well. I keep ending up in these terrible, you know, situations with, you know, not very good results. And so, there’s got to be something, I need to talk somebody. And so, they came to me and told me, “You know, we’re going to adopt your daughter out,

Tammy: Oh, gosh!

Fidelia: We’re not going to give you services.” I was in jail as a result of poor choices again. I was like, “You know what? If foster care’s going to be the best thing for my daughter right now, I think that’s the best thing going because, right now, I need help. I can’t be a good parent if I’m falling apart, and I need somebody to help me learn how to help myself.” That’s where advocating came in because I had to advocate to get my mind right, to get my life right. And in order to be a good parent, I needed to be straight. So, I was given an evaluation, a psychiatric evaluation, because I requested that. And then, I requested a therapist. They gave me a therapist. And then, I started seeing a psychiatrist, then they prescribed me medication. And once I started taking medication and talking to my therapist on a regular basis, things completely changed. I caught up with myself. I caught up with my mind. I was able to process feelings without acting out impulsively, compulsively, and it was a game-changer because it was like, “Oh, wow. I’m mad right now, but I’m not putting my fist in a wall.” You know? I’m not slashing tires [chuckles] or being ridiculous. That’s where it began for me. And so, I could recognize behaviors in my children, and then I’m like, “Hey. That’s little mini-me right now, undiagnosed.” And then, I was able to start advocating for my sons. My daughter had a speech delay, so I got her assessed, and had I not known anything and got a little education on mental health, she wouldn’t have been assessed. And so, she had a 40% speech delay. I was able to put her in speech therapy. Now, she talks all the time.

Tammy: That’s great though.

Fidelia: But, I’m happy for that. You know what I mean? Without that extra help, you know. Who knows how that would’ve turned out. Also, she suffers from anxiety. She is diagnosed with anxiety at the age of 2 because she was taken from me twice. She stayed with her grandmother, and then when I got her back, it was separation anxiety. So, I couldn’t get her to sleep in her own room for about a year, and I had to use the tools that I had, which was parenting magazines. I had no advocate. I had no family partner. I had none of those things that are in place nowadays. I had to do it for myself, so I spent a lot of time just trying to ask questions and getting help. And, you know, how most people don’t appreciate having CPS and an attorney, and a child’s attorney, and the district attorney, and the judge. Well, I used all these people as my support. You know what I mean? I needed somebody to keep the fire lit underneath me, so I would never have to go through this again. And so, I began advocating for myself. I began completing case plans. When they wanted to close my case, I advocated, “I need you to keep it open another year. I need to make sure that I am solid in my sobriety, in my mental health, and everything else, so I don’t ever have to see any of you people ever again.” That’s where it began for me, I started advocating, and then I just stayed advocating, and I still advocate and now, I help other parents whose children come into the clinic, where they’re seeing for behavioral –  mental health challenges. I help the families, the mothers, the grandmothers, the fathers, the caregivers, the foster parents, and it’s like, “So, what challenges are you facing?” Because not only is the child challenged right now, you’re challenged. You’re the one sitting up at night. You’re the one having to call the police. You’re the one not sleeping because your child’s not sleeping. You know, you need self-care or, you need help with SSI, how can I support you? That’s what I do today, you know. I have had clients say, you know, how parents, who have mental health challenges as well, then we know they’re like, “I’m supposed to be taking anti-depressants.” And I’m like, “Well, why aren’t you taking them?” And they’re like, “I don’t need that. Do you take medication?” And I dig in my pocket, and pull out my pills and say,

 

Tammy:

 

Fidelia: “Yes. Every day. Chill pills at 5 o’clock. I need to act right ’till I can get through the day so I can model for my children how to act right. And then, so the next thing I know I have a client come back in with later saying, “I’ve been taking my pills for about a week and I feel good!” I’m like, “That’s what’s up!”

Tammy: [laughs]

 

Fidelia: “I need you to feel good so you can get through this ’cause this whole process is challenging.” And so, that’s what I do every day and I love it but it’s from lived experience, my own lived experience, not just my child’s lived experience, but mine.

 

Tammy: That must make you just a great advocate. Can you talk a bit about how in your work, experiences that you’ve had? With you having lived experience, it was a game-changer at being able to help someone, so you give this great example. What about with working with parents helping their youth– Is that, can you give other examples? Because I think that’s so powerful.

 

Fidelia: The what? My lived experiences?

 

Tammy: To be able to share that with others.

 

Fidelia: Well, I share it with them all in time. I have no shame in what I’ve been through. I’ve been through exactly what I was meant to go through, so I could help other people get through it. So, whether it be, you know, going to IEPs, I’m there to support them. I tell them, “Well, what are your concerns? I need you to write that down, so you can voice that because your voice needs to be heard at these IEP meetings. They’re not experts on your child, you are. You need to tell them what it is that you believe your child needs to get through a productive school day, not being called to come pick up your child.” So, helping them was like changing in front of my 504-planet school, and making the school district accountable for the education and special resource teachers that are supposed to be in play when their child has an episode. You know, so they can say call up and say, “Hey. You know what? Where’s the resource teacher? You know, you can’t keep sending my child home. He’s not getting the education.” And I helped them through that process. I helped them through the process of personal relationships. I’m a survivor of domestic violence. “Are you in an abusive relationship? Well, what is it that you need to do so you can feel safe, so your child isn’t walking around on edge, who’s suffering from PTSD from witnessing this, and you have PTSD.” We talk about all kinds of personal things because I’ve been through all those personal things; substance abuse, incarceration, I’ve been there, you know. So, we can run the gauntlet of what you want to talk about, but I get them to open up because I’ve already done it. You know, not once, not twice, but probably six or seven times, and still, didn’t get the message that I was supposed to get. So, that’s how I help in any area just about. And if I don’t know about it, then we go and find about it together. That I’m coming to your house, we’re going to meet for coffee, I’m going to meet you at this school, whatever, come to my office. I’m there to support them. They’re my client, you know. So, that’s how I do other advocating.

 

Tammy: You said you went so many years without a diagnosis. Right?

 

Fidelia: Mm-hmm. Yes.

 

Tammy: What kind of things are you saying that have changed, that might make it more likely someone in that situation gets a diagnosis and gets help? Or, this could be the case too, what are you seeing in her, like, “Darn, nothing’s changed here on this issue.” You know what I’m saying?

 

Fidelia: You know, the thing that I noticed and has changed is just on approach, and, you know, to culturally– different cultures and how they approach, and how they deal with mental health, a multi-cultural. And so, the family I grew up in, it was just, you didn’t do psychiatrists, he didn’t take medication. You prayed, and you asked God to fix your mind, you asked Jesus to heal and touch your mind and cure you of whatever mental illness that you had. That didn’t happen. So, I see, now, that there are clinics for children, and when I was growing up. If there were some, we never heard about them. I think, if I were on medication as a child, if I was diagnosed as a child, instead of told that I needed Jesus and that I had demons in –  I probably did with the little help along with the mental health aspect, it contributed,

 

[laughter]

 

Fidelia: –but I think, now, that if I would’ve had that growing up, and how things would probably, more than likely, would’ve been so different for me. A lot of different choices would’ve made because of my mind. Would’ve been in a mindset, my medication would’ve had me thinking differently. And, that’s what I see differently now is that there’s clinics, and clinics and clinics for our behavioral mental health challenges for children. And, when I was in school, you didn’t have a school psychologist, you had a school nurse. That was it. And that was it. So, that’s–

 

Tammy: So, that’s a big positive change?

 

Fidelia: That’s an absolutely amazing change! I think if you can nip it in the bud or get– not so much as nip it in the bud but kind of get a handle on it, you know, while they’re young. It makes for a different future for them that could be more positive than just letting it go, and being like, “Oh, that’s just Charlie. That’s just how he is.” I mean, there’s more to it. It turns into something really serious as an adult. Your decisions, and your choices, and your boundaries, there are none, because everything you’re doing is your normal, and it’s just– it’s not healthy.

 

Tammy: I guess my next question is, what keeps you doing the advocacy work? Because quite frankly, I’m sure it gets hard sometimes, especially when you see things be voted down in terms of funding for programs or all the kinds of things that the disappointments that can go with the advocacy work. What keeps you going through it?

 

Fedilia: Because I’m good at it.

 

Tammy: [chuckles]

 

Fedilia: I’m good at it.

 

Tammy: I can tell. [laughs]

 

Fedilia: I don’t take ‘no’ for an answer. I just refuse to hear it. You could tell me ‘no.’

 

Tammy: [chuckles]

 

Fedilia: But, I’m going to still keep coming at you, and then I’m gonna rephrase the question in a different way, and hopefully you didn’t get it, but eventually, I’m going to get a ‘yeah.’ Whether you’re telling me “Yeah,” just to get me out of your office. That’s all– I got to ‘yeah.’ I’m good for it.

 

Tammy: That’s right.

 

Fedilia: So, I keep going. And all parents should once you figured out, “Okay. This is what it is, and this is my child? This is my child! Not taking ‘no’ for an answer. No no no.

 

Tammy: That’s right. That’s right. I just want to thank you for all that you’re doing, for all the people that you’re helping. It’s a huge thing. And also, again, as a parent, I love to see success stories, they give us so much hope and to get people hope for the middle going throughout this themselves right now. So, just thank you so much for all that you’re doing. You’re such a light.

 

Fedilia: Thank you for your time and your consideration.

 

Tammy: Thank you.

 

[music]

 

Tammy: 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 FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to mothersonthefrontline.com

 

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