Raising a child with ADHD, Oppositional Defiant Disorder and Anxiety

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

[music]

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

[music]

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

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

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

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

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

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

Tammy: Absolutely.

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

Tammy: Absolutely.

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

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

Mom: Exactly.

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

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

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

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

Tammy: It’s not easy. 

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

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

Mom: I try to. Yeah.

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

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

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

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

Tammy: Which happens a lot when kids are developing. 

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

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

Mom: We got this down.

Tammy: — we solved it.

Mom: Yeah. We solved it. [laughs]

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

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

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

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

Tammy: Invisible disabilities are tough. 

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

Tammy: I like that.

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

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

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

Tammy: I’m me again. [laughs]

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

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

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

Tammy:

[laughs]

I love it.

Mom: And I’m like, okay. 

Tammy: No sharing Mary. [laughs]

Mom: No. 

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

Mom: Thank you for giving me the opportunity. 

Tammy: Thanks. 

[music]

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

[music]

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

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

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]

[end]

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]

 

Getting People to Listen, Just Ask Mom Episode 15

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

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

Transcription

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

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

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

Tammy: That’s right.

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

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

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

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

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

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

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

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

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

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

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

Tammy: Yes it is.

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

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

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

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

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

Tammy: When you were young?

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

Tammy: Oh I see.

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

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

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

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

Tammy: So your body remembers this?

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

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

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

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

Tammy: It takes strength to ask for help.

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

Tammy: I see.

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

Tammy: 20?

Cheryl: 20.

Tammy: Oh my gosh.

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

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

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

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

Tammy: How old was he then?

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

Tammy: How heartbreaking.

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

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

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

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

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

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

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

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

Tammy: But luckily that wasn’t that night.

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

Tammy: Of course, he needs you.

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

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

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

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

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

Tammy: Yes, it is.

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

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

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

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

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

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

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

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

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

Cheryl: Mmm hmm.

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

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

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

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

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

Tammy: No one would listen.

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

Tammy: As opposed to a child with a problem.

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

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

Tammy: Absolutely.

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

Tammy: Yes absolutely.

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

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

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

Tammy: How so?

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

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

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

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

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

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

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

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

Tammy: Did that help?

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

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

Tammy: Oh sure, we all are.

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

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

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

[Laughter]

Cheryl: This moment I am swimming.

Tammy: That’s wonderful.

Cheryl: Not fast.

Tammy: Sure. Not in the fast lane but-

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

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

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

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

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

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

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

Tammy: And that helped you?

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

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

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

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

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

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

Tammy: That is a nice idea.

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

Tammy: You’re beautiful.

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

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

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

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

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

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

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

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

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

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

Cheryl: As a mom.

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

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

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

[Laughter]

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

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

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

Sometimes we have to go back to go forward.

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

Cheryl: No problem.

Tammy: Thank you.

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

[End]

 

 

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

 

[end]

 

Rebuilding the “map” of a child’s brain after trauma. Just Ask Mom Series Podcast, episode 10

In this episode, Nate tells us about his journey adopting his young son from the foster system and how the trauma of his son’s early life has left a complicated matrix of diagnoses.

 

Transcription

Voice: Welcome to the Just Ask Mom podcast where parents share their experiences of mothering children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with Nate, an adoptive single Father of 8-year old Ricky. Nate is a military and railroad veteran and lives in Iowa.

Tammy: Tell us a bit about yourself before or after you had your son, just tell us a little bit about you?

Nate: Back in 2014 I chose to– well I guess I should go back even further—when I was 30, I told myself that if I wasn’t married with 2.5 kids by the time I was 40, it was time to do something. So I did something and when I was 40 in 2014, I got license to adopt. The end of October in 2014. And that’s when the road started. A road that I had never been down and very few people in my family ever have either. Including my cousin in Arkansas who is a Special Ed teacher. Prior to that I’ve been a locomotive engineer for 20 years. Worked all over the country. Before that I was in the military. I’m a military veteran. I was a medic in the military. I had that experience but none of that prepared me for what was to come when I entered the adoption world and the various spectrums of which you would encounter.

Tammy: Okay. So pretend you are talking to the public, or you’re just telling people who haven’t had these experiences that you’ve had, what do you want them to know?

Nate: Well, foster kids, they’re in a whole different class and you often hear, these kids are damaged, or these kids have baggage or these kids are bad kids even. The stigma that follows them and none of it is their fault. The public, in general, seems to block out the fact that these kids come from very, very bad situations, and because of that their minds have been reprogrammed in all essence to survive. And that’s where a lot of these behaviors come from, and that’s what, us, as parents struggle to reprogram. If you can imagine a Rand McNally map of Missouri when a child is born. You have all of those highways going everywhere, well that’s a child’s brain when they’re born. Once you place trauma, physical abuse, sexual abuse and every other avenue on top of that, you might as well take all of those highways on that Missouri map and throw them away and you could just draw four lines that do not intersect each other, that end in nowhere and those four lines are survival, food, shelter, safety and getting their way – what they think is best for them. Those four little highways, that is it in the entire state that end nowhere, that don’t talk to each other, and it’s up to us as the public, not just the adoptive parents or foster parents, it’s up to us as the public to build all those little highways back together again.

Tammy: That’s right.

Nate: To attempt to rebuild that entire map. Now, it’s a little bit easier when you get them when they’re pretty young, not much, but a little. But it falls back, it just takes a lot, a lot, a lot, of resources to do so.

Tammy: Right. Tell us about your situation. How did you come about meeting your son and having your son and what was it like in the beginning?

Nate: It was actually very interesting. The end of 2014 and through most of 2015 I had set my home study out on various kids all over the country, literally, that I was interested in but I never really, never got considered for them.  Even once they had told me that they even had no other home studies being considered. But just as I was kind of losing hope thinking I had wasted my time getting licensed, I got a phone call. It was almost to the day – the anniversary of when my brother died in 1999. I think it was November 27th of 2015 my brother had taken his life, the end of ’99.

Tammy: I’m so sorry.

Nate: I want to say the 26th and his name was Rick, well I got a call about this six-year old that was named Ricky.

Tammy: Oh wow.

Nate: My initial intent was to adopt older like 11-12 what I tend to call the forgotten bunch -the older ones. To give them a chance number one. Number two, my work schedule is not the greatest and I kind of needed a child that was a little more self-sufficient. But they called me about Ricky, of course, the coincidence, that I could not ignore. He was a lot younger than what I had planned on but then the first things that start popping in my head is well he sure is young enough to still be able to create that bond. And whatever he has wrong should be able to turn that around or get it stabilized. So I went ahead and started visits December of 2015 and the visits I had with him, he seemed a little hyper, a lot of energy, but to me nothing out of the ordinary. Even when the visits progressed to him coming to my house to stay overnight, he wasn’t too bad. Manageable, he was manageable. Well, the end of January, they moved him in. Something had happened in the foster home and they needed to move him quickly so they went ahead and expedited the transition into my home. So I moved him in I think it was January 27th or 28th. And it was really neat because you could tell he was just happy as a lark to move in. He had never been in such a fancy house. He never had all these toys before. He was just the happiest kiddo West of the Mississippi. Then day two came.

Tammy: That quick?

Nate: That quick.

Tammy: Wow.

Nate: As soon as I went down to wake him up the morning of day two, I’m here to tell you, I just barely touched him on the shoulder and he just kind of cracked one eye open, he just slid down the bunk bed ladder down to the floor and he just took off running, I mean he’s running into walls and everything else. He’s still half asleep and he just zooms, right on up the stairs.

Tammy: Wow.

Nate: It was the craziest thing you’ve ever seen, you know what I mean? And he just– he was full board the rest of the day and I’m like, wow. I mean I’ve been around ADHD kids before but nothing to this degree. But at that time that’s all I was dealing with, I was dealing with hyper. An of course at the time he was on stimulants, he’d take his stimulant in the morning and he would kind of level out but then the rise to fame would start about one or two in the afternoon. Everyday. So he started school almost immediately and he did good at school for the first month. Then I started getting calls that they’re having problems. He would run out of the classroom and go running around the halls, or he would start throwing animals around the classroom or tearing up books or tearing up other kids’ papers. Not following directions, so on and so forth. There wasn’t any confinement at that time. But his outbursts — and at that time he was not in Special Ed either. So we dealt with it and over the– and right about then I started getting him into the local psychiatrist to figure things out. What’s going on with his meds or what are we missing or what do we need to do next. So they changed his meds to something different and well that was a mistake.

Tammy: Really?

Nate: They didn’t wean him off, they just switched from one stimulant to another. At that time, I was completely ignorant to that.

Tammy: Right, so you’re just trusting really what they tell you–

Nate: Yes.

Tammy: –because they’re the experts, right?

Nate: Yes.

Tammy: I’ve been there.

Nate: Oh.

Tammy: Yeah.

Nate: And so he– after that for the next couple of months, I mean it was just problem after problem after problem in school. They were making adjustments wherever they could and I have to hand it to that school. They tried, tried and tried again. They genuinely adored him and understood what he has to be going through. At the same time, there were no secrets between me and the school on day one, they got everything that I had. Child studies background, everything. So they knew absolutely everything and they couldn’t come back on me on top of it, you know what I mean?

Tammy: Right, you were in it together, really.

Nate: Yes, yes, we were working together. And I was raised that way with school districts because my mom is a retired teacher. So I have a compassion for the teaching industry. I understand how it works. I had a lot of problems over the next couple of months and he didn’t really have many confinements. There was a couple – two or three instances where they had to use confinement, but me or the nanny was home and one of us would go get him right away. He wouldn’t stay there. But that it was only two or three times I want to say total in that first year. Now. In May, I had got him up here to U of I and uh, they are a great facility, they do try very hard to work with the different families. They changed up his meds again and kind of went back to the original med schedule and then just hit some tweaks and added one I think– one med. And things seemed to level off the rest of May. Well enough to the point that I thought that they had gotten things figured out. Or got him on the right track. He was on a good enough track that when his worker, his social worker came to the house for her monthly check up, she asked if I would be interested in his older brother and she told me what he had and he had all the same things that my guy had.

Tammy: How much older is he?

Nate: One year.

Tammy: So they’re close.

Nate: Yes. except for the older one also had RAD.

Tammy: Radical Attachment Disorder?

Nate: Reactive.

Tammy: Oh reactive, I’m sorry Reactive Attachment Disorder. Okay.

Nate: Yes. I had done some reading about Reactive Attachment Disorder and my cousin who’s a Special Ed teacher did a paper in college on RAD so she was familiar with it too.  I figured with him doing well and what I knew and the resources that I had, I figured he’d be okay. So I took placement of his older brother middle of July and for the first few days, great. I mean, they were inseparable. As a matter of fact, they were inseparable the whole time they were in the same home together. But here’s where it went wild. About a week into it, the older brother became distant with me right away – not right away but all of a sudden. He didn’t want to hug at night anymore or he was just oddly distant. I couldn’t figure out what had happened in that weeks’ time that it turned his switch off.  I didn’t really figure it was just RAD, I just figured something I might have done or didn’t do.

Tammy: Parents do that, don’t we? We always blame ourselves.

Nate: Oh, second guesses.

Tammy: Yes, second-guessing, yeah.

Nate: So it just started to get worse from there. Where he wouldn’t take a shower or he wouldn’t do something I asked or what have you. And over the course of the next two weeks is when things really got bad because what he was doing was bringing up their shared trauma.

Tammy: Oh, I see.

Nate: He was bringing that up to Ricky and getting Ricky stirred up, causing Ricky to act out.

He would keep feeding Ricky with these traumas and these ideas of acting out and behaviors to the point that I had, at the very end– three weeks is all the placement lasted. I had went to work and my job keeps me away roughly 24 hours. Nanny is there the whole time. I get down to the other end of my territory and turn her phone on and it’s just blowing up, the nanny is just blowing up my phone, “Well they’re doing this, the older one was caught with a knife behind the shed and the dog and this and that –  and the younger one was just taking a hammer to the front steps,” and I’m like, “what is going on?” Taking paint throwing it all over the garage, it was wild. So I get home and they had done about $3,000 in damage to the house.

Tammy: Wow. Which actually takes a lot of effort for a child of those ages to do, right? I mean, well I guess not they can do damage quickly but it sounds like they were working hard at it.

Nate: These type of children, no.

Tammy: I see.

Nate: Because there is no self-control, there is no line in the sand with them.

Tammy: I see.

Nate: Everything’s game.

Tammy: And they must have been putting themselves in danger it sounds like.

Nate: Uh-huh and the nanny, she was doing everything she could to keep them–

Tammy: Safe?

Nate: –safe. But they were not listening to her whatsoever. They were threatening to run away, they were screaming obscenities at the nanny. There’s just no way. It was just an out of control situation. I don’t know what I could have done if I was there except call the sheriff. It was just a very bad scenario. The next morning, I had them go to bed after they ate when I got home that night and the next morning. Well as soon as they woke up I took them to the emergency room, I had spoken to a counselor overnight through my employer and they had suggested that that needed to happen. So I did. I went to the emergency room the next day and spent about 10 hours in the emergency room. Finally, the local officer came and picked up the older brother and took him away, removed him. And my little guy, that was the first time he got admitted up here, to the university. And so moving forward, he was in the hospital for about a week, a little over a week, came home, they tweaked a few meds. They didn’t really get to see any behaviors while he was in there, which didn’t help any. But they tweaked a med or so and they sent him home because he was being safe. And he had started school, second grade, maybe a week later. And I think it was not even a full week into the second grade and the calls started again, of physical aggression and screaming obscenities at the staff and out on the playground and dysregulation. Just you name it and I think it was the beginning of September he was suspended.

Tammy: Really?

Nate: Second grade, your being suspended.

Tammy: At this point no IEP?

Nate: No, IEP, nothing. But he was suspended for…

Tammy: Individualized education plan, we try to recognize that we need to clarify for our listeners who don’t belong to this world of alphabet soup right? Go ahead, sorry.

Nate: I guess the acronyms will throw them off. He was suspended for — he’d been standing in line, turning around. A new student, first day of school for this new student moving from somewhere else, was standing right behind Ricky. And Ricky just impulsively, just turned around and grabbed his glasses and just broke them and threw them on the floor.

Tammy: Oh, wow.

Nate: No reason, no rhyme or reason, no anything. So they suspended him and I agreed with it. It is what it is. He was at fault. So that’s where it started going downhill. I want to say it was, middle of September, that I had called an IEP to sign paperwork for suspicion of disability so he could be evaluated for special education. Now I’m here to tell you that next 60 days, might-as-well have been 6 years. It, it just seemed to take forever. The stuff that he did at school, I felt so sorry for all the other kids that were being put through that. It was traumatizing for the other kids, just like it was traumatizing to Ricky.

Tammy: Absolutely.

Nate: But this is the way they do things and it’s unfortunate. But anyway, they started the evaluation middle of September and we rolled into October. He ended up going back to the hospital. I think it was third week of October. They started to see little behaviors. They kept adding diagnoses and it was just baffling. I mean this whole time, I’m constantly on the computer researching, constantly reading studies. I’m trying to figure out this, this web that we have going on with him, trying to make sense of it because from a logical perspective it does not make sense in any way, shape, or form. Just the fact that a six-year, well, seven-year-old at this time could be so complicated. It’s just scientifically baffling to me, but he went back to the hospital in October. During October, I also got him into a geneticist and had him tested for Fragile X syndrome, which he tested negative for. I also had a CMI done, chromosomal microarray, to look for any anomalies in his chromosomal structure. That did come back abnormal, but, naturally, the partial deletion that he has, medical research has not caught up to that part of the strand yet. So they did not know the significance, if any that it would be, even though this particular chromosome that he has deletion in has a lot to do with behaviors.

Tammy: Oh, okay, so that, there’s some link at least.

Nate: Yes, I mean there’s suspicion, because this particular chromosome can depict William Syndrome. It can depict Schizophrenia. It can depict Autism. So I mean there’s a lot of behavioral controls or programming in this particular chromosome. But anyway, moving forward, he come back home from the October hospitalization. He was okay that I could tell. It depended on the day. Some days, he’s all right. But he would go only a day or two for being all right and then you would pay the price. It was November ninth, they went ahead and ended his evaluation early, a little early because they had enough.

Tammy: For the school?

Nate: Yes. They had enough data to go ahead and qualify him for special education. In the middle of November, they moved him from the school he was in to the other elementary school in town which was where their Special Ed department was.

Tammy: I see. Do you feel that helped at all?

Nate: [laughs]

Tammy: [laughs] No. Uh oh.

Nate: Oh, boy. In the very beginning, yes. But my little guy is so complicated, they couldn’t hold a candle to his needs. They distracted him, that’s what I like to call it for the first week. Then he started to show some behaviors he was showing more and more and more behaviors and needing more and more time in the Special Ed room, out of the classroom. More disruptions and so in the middle of December, he just went downhill. We never got him back. When he got to the new school from the middle of November, he started getting a lot of confinements in Special Ed almost daily for long periods. This went on until Christmas and he got out of control on Christmas and he went back to the hospital on Christmas. He was there until about January fourth, when he was released again and there again, another diagnosis and another med. But I think that it was that hospital visit I– I could tell when I picked him up he wasn’t right. He just, you could tell, he wouldn’t really last very long.

Tammy: How is he doing now?

Nate: Oh, well, he’s been in residential for five months. And they’re just starting to see progress.

Tammy: All right.

Nate: In the beginning, he was getting his money worth out of them. They were seeing all kinds of behavior. They saw behaviors as the day he was admitted. He had quite a few confinements and so forth but of course that facility is designed for those type of children that need that kind of care. We did a med wash on him. Got all the five different meds out of his system which I requested last year. Just last year but the doctors wouldn’t listen to me. Then they had him off all meds for a month and he did better. They got him off all the meds. He did level up somewhat. He wasn’t getting what they call incident reports on a daily basis. He was still right in that line of getting them but he was not taking it all away. Recently they started him on a new med, just one, trying the non-stimulant route and it’s showing promising signs.

Tammy: Well, good.

Nate: Next month we’re going to have a neuropsychological testing done to look for autism, like Asperger’s or see if there’s something else there. It’s supposed to identify which pathways are dead-end, up to his pre-frontal cortex, to see if we can get any explanations in that area or if it’s just all pure psychological, as far as his trauma and it was discovered that it appears that the piece of the puzzle that I was missing all last year, the things that were not making sense when I got him he did not have RAD. But he’d, once he got to me, and felt safe, comfortable, which didn’t take very long and the behavior that started.

Tammy: Yeah, that’s not uncommon.

Nate: That’s when the RAD surfaced because before that, he was not, he didn’t feel safe. He felt on edge. He was in survival mode in his natural instinct. But like I said, once he come to me, these symptoms started coming out. And, you know, the RAD symptoms, a lot of these, disorders that we’re dealing with in special-needs kids, whether it would be autism, ADHD, ODD, DMDD, just the acronyms are endless.

Tammy: They are.

Nate: But the symptoms they overlap each other in such messy basket weave. And to get that sorted out, it takes time.

Tammy: Another thing, I mean your son is still young. And as I talk to a lot of parents and tell my own journey, the brain’s developing and the diagnoses change and are added as they grow sometimes, it’s very complicated. You’re absolutely right.

Nate: Absolutely, it’s complicated. Yeah, and what aggravates me to this day is that we don’t, we as parents, we rely so much on the professionals. And in a way, I feel like we’re being taken advantage of because the professionals seem to just push, push meds. And not the right meds either. They want to push diagnoses that aren’t the right diagnosis. You provide them with all of this information, background on them and they don’t look at it. So we’re going into it blind asking for their help and they’re just handling another piece of cattle coming through the office. I hate to use that analogy, it is what it is. Yeah, and it’s heart-breaking to know that your child is being treated like that, you know?

Tammy: Yeah, but I mean you have this insight to that child that no one else has.

Nate: Well, absolutely, all of us are the Ph.D.’s of our child.

Tammy: Exactly, yes. I agree. It’s important to have a team that listen to the parents, listen to the other members of the team, thinking of the whole picture of that child, but it’s hard to make that happen.

Nate: It is. It’s very hard. That’s why I’ve created a term –  and it may be out there but I haven’t seen it — I call it respectfully aggressive parenting.

Tammy: I like this. Say more.

Nate: If you hear something you don’t like from someone in your network, you tell them, “Okay” and then you go to the next one. You either go to the one to the left of them or to the one on the on top of them.

Tammy: In the end, you’re fighting for that kid. That’s what you have to do.

Nate: That’s absolutely right. A lot of these people that we deal with in trying to secure services for our children they’re just doing their job. That’s the way they’re told to respond. So there’s no reason to get mad at them. There’s no reason to yell at them. There’s no reason to throw a fit. Go around.

Tammy: So, you know, there’s just so much, right? So I’m going stop you there, but I do hope we can come back to you as you progress in your journey and this is just, there’s just so much.

Nate: There is.

Tammy: So much. But at this moment right now, are you swimming, drowning, treading water? Where are you at?

Nate: Before he went to residential I was drowning. All of the community-based services in my area down there were exhausted. We weren’t getting anywhere with it. I had this seven-year-old that, for all intent and purposes, it was like gremlins in my house. I mean, swinging from the ceiling fan, you know just turning up the house and there’s nothing I could do to it, or do about it, you know. Police would have to come to my house to get him to do what I needed him to do. At that time, I was drowning. Even the local hospital didn’t know what to do with him. But at this time, I’m treading water, because it’s given me more time to do research and gather myself and understand what we really got going on with him. Working with his therapist there at the facility and her explaining some things. I mean, I’m feeling more comfortable. Now, that doesn’t make me a pro-at handling the situation yet.

Tammy: Right. It’s hard. And there’s just no way around it. This is hard.

Nate: Yes, yes, just because I’m not programmed like that. I was raised completely different, you know. It’s hard to take an eight-year-old and treat him like a two-year-old because that’s where they’re mentally at. It’s just very hard to shift gears down there. So I’m still learning, like I should be. I’m going to say I’m treading water right now, but I feel comfortable at it.

Tammy: Good. So what do you do for self-care to get through this? What helps you to get through it?

Nate:  I think a lot and I read a lot. I don’t let myself– if I started feeling myself like a little down or depressed or overwhelmed, I simply just revert back to the task at hand, the challenge at hand which is understanding how all of these disorders tie into each other. What they mean, what the outlook is so I’m constantly on the internet researching, reading studies both here the UK. The UK is doing a lot of research on ADHD. But I just keep passing scenarios thrown in, I just keep reading, keep education– keep educating myself so I can fully grasp what we have here. You know what I mean? It pushed me to go back to school. It pushed me to start a book, if nothing else just to have it documented while fresh in my mind. um, That’s what I do to keep myself maintained.

Tammy: So this is all very hard stuff. We always like to end with this question, because the only way to get through this is laughing occasionally, having some humor about it. What’s your most laughable moment that you might like to share with us?

Nate: The most laughable moment and regarding to him?

Tammy: Anything you want to share but yeah, in terms of parenting and so forth. What can you laugh at through all this?

Nate: The first time that Ricky was– he’s had several very laughable moments –but the first time he was in the ER, during that ten hours, him and his brother they were pretty unruly. And they ended up having to separate the two in two different rooms. And Ricky was being very aggressive to the point– I was standing out in the hall. There was three nurses in there. And he was working all three nurses over pretty good. So they have to call security. So I was standing in the hall and here comes this very large man, security guard, around the corner. And he kind has-his chest bumped out a little bit. He just kind of glared over at me. And he walked over to the door, to the exam room where Ricky was at. He slowly turned that doorknob, slowly opened it, side-stepped in, told the nurses that they could go. That he’s got it. Nurses filed out. He slowly closed the door very quietly. And I sat there for about a minute, and I kid you not, it sounded like Tom and Jerry going at it in that exam room for a full hour.

Tammy: Oh my gosh.

Nate: I mean it did not stop. They were just, oh, I don’t know what’s going on there but they was chasing each other hard. And then it got quiet. After that hour, it just completely got quiet.

Tammy: That’s always frightening when things get quiet.

Nate: Yes, and within a couple of minutes of it getting quiet, that door slowly opened again. He pulled it open, he side-stepped back out of it, closed the door, turned around, looked at me. His entire shirt was soaking wet with sweat. He comes up to me and he’s out of breath. And he says, “I don’t know how you do it?” I said, “Well, I’ve been doing it for almost a year, what’s your problem?” And he just shook his head and walked around the corner and I went in to check on Ricky, opened the door and there’s Ricky just sitting on the edge, of the exam table watching TV. Not a bead of sweat on it.

Tammy: Like nothing happened? Oh my gosh.

Nate: Not breathing hard, no bead of sweat. Nothing.

Tammy: Nothing .

Nate: Just like it didn’t even phase him.

Tammy: Wow.

Nate: And so he worked that man over pretty good.

Tammy: Well, I want to thank you for sharing your story. And like I said, hopefully, we can come back, talk to you again as you get further along in your journey.

Nate: Absolutely.

Tammy: Thank you so much for sharing this. We have to laugh sometimes right?

Nate: No absolutely, we got to find the humor.

Tammy: That’s right. Well, thank you so much.

Nate: No problem.

Tammy: Thank you.

Voice: You have been listening to “Just Ask Mom”, recorded and copyrighted in 2017 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 MothersOnTheFronline.com.

 

 

[end]

 

 

Raising her grandson after he experienced abuse, Just Ask Mom Podcast Series, episode 5

In this episode, a Grandmother tells us about raising her grandson who experienced trauma and suffered from several conditions, including ADHD, anxiety, bipolar, and learning disabilities. Please note that this story discusses child abuse and may be triggering for some of our listeners.

 

Transcription

Speaker: 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 speak with a Grandmother who is raising a grandson with mental health and learning disorders.

Tammy: Okay. Alright. So just to begin, just tell us a little bit about yourself before or outside of mothering, just about who you are.

Grandmother: Okay. I’m a mother of two boys who are grown, and um, they seem to have a fairly happy life, one has moved back to go to school, and one of them is still living on his own. After my second marriage, my husband had a son, who was a substance abuser and he abused his young son when he was very small. And we took him, in fact we took him because his father asked us to take custody of him so he could get back at his wife for doing things he didn’t like. He didn’t really think we should take him, he just thought that this legal thing would make his wife afraid to talk to anybody. And we got the papers and our lawyer talked him into guardianship, which means you can make all decisions for the child, and when he was hit and really, and really only minorly, we said, “You don’t have to go back.” And he was very happy about that, and he recently told his psychiatrist that was the happiest day of his life. He was six at that time. We have had him now, and he just recently turned eighteen, and he’s moving into this town to live in supervised housing, because he has mental illness and he has intellectual disability. And so he needs to be supervised twenty-four seven, and they offer quite a bit of other programs, things for him to do like go to a parade, or go to the park, or—really not things that cost a lot of money, although occasionally they do, but they get passes to the fair and — what not. And so this is his first day, and he’s very happy about that.

Tammy: Wonderful, wonderful. What would you like people to know about your experience?

Grandmother: I would like them to know that often, children only show the surface of what’s going, we sensed abuse but it was only later when he told us– about a month later, he told us he had been sexually abused, about a year and a half later he told us that his baby brother who had died of SIDS was actually murdered. So he was keeping this all inside. We needed to get help for him, and I really would like mothers to know that, although it just breaks your heart to take a small child to be in residential treatment, that sometimes it’s the best thing and it’s definitely not a horrible bad thing. He was kind of like, “Bye, mom” (that’s what he called me already. They said he cried a little that night, but that’s all. And he learned so much in the various times he was in the residential treatment, and the last time he was in he got into a program that was for both mentally and intellectually problematic children. And I wish there was more because, to my knowledge, it’s one of the few places that has that, and he’s in a– was in place that only took care of eight children.

Tammy: How did that help him? Like, what was positive about it?

Grandmother: One of the best things he learned was coping skills, which as a peer support specialist, I know is one of the first things you teach people who have mental illness is how are you planning on coping with this? It might just be cuddling with a soft warm blanket, it might be setting boundaries with other people that says, “I will not pull up with that.” It might be a warm bath, it might be running or doing yoga. Everybody has their own, but you teach the children that we are all unique, and they have coping skills that they can use. And they teach parents the same thing, because when you put a child into residential care – or a lot of times they don’t get to stay as long as he did –  but when you put them in, they have a goal in that time which is often 9 months to a year of learning these coping skills, which they then come home and use, and you’ve been learning them also.

Tammy: Right. So in trying to get help for your grandson, what kind of things were either barriers you ran into, or really great successes that helped you? So it sounds like one success was a residential home for him, were there any other things that either were really helpful or didn’t go so well?

Grandmother: One of the barriers was — and many mothers and fathers and even grandparents like myself, don’t know that you cannot take a child to the emergency room and say, “You can’t believe how this kid has been behaving this last month.” That does not count. A child has to have an acute problem to be admitted to the hospital which is often the best place to go, especially if they have a children’s ward for mental illness, because that way they can have their meds adjusted, which is a difficult thing to do at home. The doctor we had took him off of everything, and then slowly added things back which could be dangerous actually. So we were told- and thank God we were told- “Don’t ever go in and say: “You won’t believe how it’s been for the last month.” You have to say, “Yesterday,” –  not even ‘yesterday’- “Today, my son woke up and he is been talking about suicide.” He was only seven actually when he first did this, and he wanted us to die too, because he wanted us to go along with him, he didn’t understand death. When we said, “No, we wouldn’t do that”, and tried to explain death to him, he said, “Well then, I’ll take my cat.” We woke up in the morning and he was quite angry and I went in the back room and he was trying to strangle his cat.

Tammy: Oh, my goodness.

Grandmother: He had been acting up in other ways too. I can’t remember right now what they were but that was a clue that he was saying, “Mom, I’m so suicidal.” So I lied, I called the doctor the next day, because we were completely snowbound and had been for several days, we live in a country and our roads weren’t cleared, there was no way I could get him to the hospital, so we just watched him all day, all night, and then I called the doctor in the morning. That night he was still agitated and he had bit into a light bulb, because he wanted a weapon to fight bad guys with. He though glass would be a good idea. That was another escalation of saying, “Mom, I am really hurting, and I’m really scared, and something has to be done.” So I called the doctor and I said, “He did this and he did that”, and I made it sound like it was simultaneous, and it just happened that moment where it has actually happened the day before. Fortunately, he was young enough not to even know the truth, and so when I’m rattling off to the interviewer at the hospital, they are like, “okay” So I think that’s important for the parents to know, if you want to get help for your child other than outpatient help and which I think it’s vital if your kid has any sort of difficulty: ADHD, Tourettes– any of those things–you need to be under their care of a psychiatrist who understands the medications they are on. But if they need to be hospitalized, you need to know how to do that.

Tammy: You’re right. That’s actually a common story that I hear, and personally have been through as well. If you don’t use exact right words, right? At the exact right time.

Grandmother: You need to know the words.

Tammy:  Thank you. That’s really an important thing to hear. So we ask people as they’re dealing with this –  we understand it changes as you’re going through this, how you are doing changes throughout it –  but at this moment do you feel like you’re swimming, treading water, drowning – where do you feel like you’re at in your journey?

Grandmother: I feel like I just got out and toweled off, because my kid is, today, in a group home, where he has twenty-four hour supervision. He is not healed, but he is able to cope with most situations. He knows what to do when he’s angry, what to do when he’s frustrated. He even tells me sometimes. Maybe my husband and I have words, he’ll say, “Mom and dad, stop that! Use your coping skills.” [laughter] and he’ll guide us. Like, one day I said to my husband, the next day, because sometimes it’s best not to fight in the midst of it, I said, “You know? What you did yesterday really bothered me and I would appreciate it if you would do such and such.” And later after we had this little talk my son (my grandson had been listening) and he said, “Good job, mom.” [laughter] He’s come a long way. We got him when he was six. He’s now eighteen. He first stint in residential care was about nine months. When he was seven. It was very hard to leave him. And maybe it’s even harder for parents as opposed to grandparents, but I knew we couldn’t handle it, I knew he couldn’t handle it. We were in a mix of financial changes in the government, so how we went about it was problematic, but we had it done. We got it done and we got him in there for nine months and he came out a somewhat better person. He went back exactly a year after he had been admitted before and we realized that that time that he was probably cyclical. Some children don’t even know what day of the week it is or what day of the year it is, but his bad time was October. When the leaves fall, when the nights get darker, he had sensory things that said, “This is when I had my bad time when I was little.” So every year –  and it’s gotten much better –  he has had a bad time, actually from October till spring.

Tammy: Is that helpful at all on predicting? I mean, as you were taking care of him through all those years did that help you anticipate those months? Did it help you prepare for that more a little bit, or?

Grandmother: It did. At least we were ready for it. But every year it was less. So we’re prepared for what it was last year and the next year it’s a little bit better. Now I just recently bought, and he has never experienced it, but I bought him, one of those all-spectrum lights, which is supposed to be good for depression –that’s one of the things he suffers from. He has bipolar disorder. He experiences anxiety to a high extent sometimes, and he has just like regular depression as opposed to bipolar, and, a bunch of other [conditions]: attention deficit which is difficult, and he has difficulty learning. But every year gets better, and every year he tries harder, and so we’re looking for the worst and, bam! He’s a little worse, a little crabby, can’t sleep quite as well at night, but it’s no big deal.

Tammy: That’s great. So that’s really encouraging to hear that it can gradually get better each year.

Grandmother: Yeah, it did with him. And I think he will probably have this his whole life, bipolar is hardly ever something that goes away. But you learn what type of bipolar disorder they have and how they react as kids mature, I’ve heard of mothers especially say little girls have more of a problem, because of hormones and self-worth. Our boy got worse in early puberty, but he is such a gentleman now, it’s just—it’s wonderful.

Tammy: We like– we, parents of younger kids, really like to hear these stories. [laughter] I have to tell you. So what is your self-care routine, how do you take care of you when all this stuff that’s going on?

Grandmother: I will have to say I’m bad about that. But one of the things I remember because I also have, experienced depression and anxiety. I went to a psychiatrist and got medication. Mine is the type that I may not have to take it all my life except for one of the antidepressants helps with the pain I have it, from Fibromyalgia, which I think that many autoimmune diseases happen to mothers and grandmothers who are highly stressed. So every once-in-a-while I will make my needs known and say, “Do not wake me up in the morning.” My husband is an early riser, he likes to get up as soon as the sun is up, and sometimes he listens to me and leave me alone. [laughter] Another thing I try to do is do what I enjoy. I belong to a group that does art. I’ve never had an art class in my life. They didn’t have art when I was in school. I went to a parochial school and I won one prize in art and that’s because I picked up the wrong crayon and drew the sky dark blue. So they figured that I must have some inner angst of some sort. [laughter] But I just piddle with it. I love what I call fiber arts because it’s fun to call it an art, whereas it’s just working with thread. I like to knit. crochet, do a little quilting, and every once-in-a-while I’ll see some real arty stuff done with a little bit of yarn and a little bit of something else, and I’ve never done a piece, but I think it’d be fun.

Tammy: Yeah. That be a nice now that you have much more time on your hands, right? [laughter]

Grandmother: Yes, yes.

Tammy:  Wonderful. And, you know, the only way we get through some of this is just by laughing sometimes. What’s your most laughable moment?

Grandmother: My most laughable moments have been with my child, with my grandchild. He’s a funny kid. This one didn’t happen when I was there, but when he had his going away party there were loads of people there, even people who had already quit and gone on to grow in other areas. They said that he had been invited over to another cottage one day, because periodically they give kids a rest from their caregivers and they give their caregivers a rest from the kid, and he had a particular cottage where he liked a lot of the kids and he liked the caregiver. He went over there (and he was no longer doing it but he was aware that kids do) they kick holes in the walls. They do all kinds of stuff that—actually he never did it at home, he did horrible things at home but he never dared to kick a hole – but when he was first there, he probably did it once a week. He went over to this cottage and there was one hole on the wall, and I had hoped that maybe he’d learn a little bit of maintenance and stuff while he watched the people constantly repairing things. [laughter] So he said, “Don’t worry, I’ll fix it.” And he got some card board, and he got some crayons and he taped it all together and he wrote on the thing, “Secret tunnel.”

[laughter]

Tammy: That’s the best one I’ve heard yet. [laughter]

Grandmother: And it’s things like that make me laugh, because he’s so funny. Sometimes even his mental illness is funny, and he’ll say, “Don’t make fun of me, mom.” And I’ll say, “I’m not making fun of you, I’m laughing with you because you are a delightful child.” He’s unusual, he’s different, and we try and praise that in him, that he should be who he is. And he’s a funny kid, he’s an outgoing kid, he’s polite, and let’s not look at the fact that he has trouble learning, he’s a beautiful artist even better than I am [laughter] umand he enjoys doing things for other people.

Tammy: That’s wonderful, that’s wonderful. Well, Thank you so much for sharing your story with us, I really appreciate it.

Grandmother: Okay. Thank you.

Speaker: You have been listening to “Just Ask Mom”, recorded and copyrighted in 2017 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 MothersOnTheFronline.com.

[End]