Tank Mentality, Ask the Advocate Series, Episode 6

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

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

Become part of the Tank Mentality Movement:

Follow on Twitter @tankmentality 

Follow on Facebook: tankmentality/

Transcription

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

[background music]

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

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

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

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

Tammy: Sounds like a good incentive.

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

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

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

Tammy: That’s right.

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

Tammy: That’s right.

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

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

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

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

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

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

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

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

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

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

John: Thank you.

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

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

Tammy: Absolutely love it.

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

Tammy: Can you tell us some of that story?

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

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

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

Tammy: Congratulations. That’s huge.

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

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

John: Yes.

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

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

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

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

Tammy: It does.

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

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

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

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

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

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

John: Absolutely.

Tammy: Thank you so much for sharing your story.

John: No problem.

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

John: Awesome.

Tammy: Thank you.

John: Thank you so much.

Tammy: Thank you.

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

[end]

Advocating for Foster Kids, Ask the Advocate Episode 5

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

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

Transcription

ATA 5 not edited

[background music]

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

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

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

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

Tammy: That happens quickly. Doesn’t it?

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

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

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

Tammy: Yes.

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

Tammy: That’s right.

Tammy: Tell us about your advocacy work.

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

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

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

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

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

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

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

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

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

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

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

Andre: I… Yes.

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

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

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

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

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

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

Tammy: It still makes you spin, right?

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

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

Andre: No, they don’t.

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

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

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

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

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

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

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

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

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

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

Tammy: Just they pulled you back in, right?

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

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

Andre: Yes.

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

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

Tammy: Yes. That’s important.

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

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

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

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

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

Tammy: Good for her.

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

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

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

Tammy: That, well, we’re trying.

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

Tammy: Yes, exactly. Exactly.

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

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

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

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

Andre: Yes.

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

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

Tammy: He’ll take over, yeah.

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

Andre: Yes.

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

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

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

Andre: Yes. Thank you so much.

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

Andre: Appreciate it.

[background music]

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

[END]

 

 

Raising Children with Both Visible and Invisible Disabilities, Ask the Advocate Episode 3

In this episode, we listen to an advocate with MomBiz Boss and a mother of children who experience developmental and mental health challenges. She speaks about being a mother of color and the experiences of raising children with both visible and invisible disabilities.

Advocacy organizations discussed in the Podcast:

National Federation of Families for Children’s Mental Health – A national family-run organization linking more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families. It was conceived in Arlington, Virginia in February, 1989 by a group of 18 people determined to make a difference in the way the system works. https://www.ffcmh.org/

Younger Years and Beyond – A local chapter of National Federation of Families for Children’s Mental Health that focuses on mental health and behavioral health challenges for children starting at pre-school through beyond. https://www.facebook.com/theyoungeryearsandbeyond/

Zaria’s Song – We Provide Support & Resources to Parents and Caregivers with Children Experiencing Physical, Cognitive, Behavioral and Mental Health Challenge http://ateducational.wixsite.com/zariassong

 

Transcription

[music background]

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

Dionne: Hello. Thank you very much for agreeing to do this. Would you like to introduce yourself?

Teresa: Sure. Thank you very much for having me. I’m Teresa Wright Johnson, and I will say that I’m a mother first and then an advocate. I believe motherhood is very challenging as a business, so I’m kind of known as an advocate and a MOMBiz Boss, and we’ll talk about that later. But I’m a mom of children that were born with developmental challenges as well as physical challenges and children that have mental health challenges, learning disabilities, and more. And I advocate for them.

Dionne: And you advocate for them. So Teresa, tell us a little bit about your advocacy journey.

Teresa: So my journey began– I’m the mother of four children. I bore four children. Unfortunately– but still, fortunately, have one living child. So I had several children that died very early on when they were born. And then my other two children were also preemies. In coming– you know this is November. This is National Pre-maturity Birth Month– Awareness Month. A lot of people don’t know that. And with premature children, sometimes you have greater risk factors. And some of the risk factors that happened and that were indicated with my first child who was Zaria– and I have do so much for Zaria in her name. She was born with various disabilities, more physical and cognitive. She had cerebral palsy as well as metabolic disorders like mitochondrial syndrome. She also had seizures, low-birth weight, feeding issues, mobility issues, just so many different issues. But guess what? That did not sway me. I wanted to be a mother. And once I found out I was going to be a mother to Zaria, I started to getting training at the hospital–

Dionne: Oh, wow,

Teresa: — so that I could be the best advocate for her. So over the years with Zaria, I started my own support group for mothers of color called Special Treasures, because I feel that our children are not just special-needs children. They are special treasures. They are treasures that open us up, expand us, push us way beyond our comfort zones, and stuff. And so I did that with Zaria. Zaria, unfortunately, passed away.

Dionne: I’m sorry.

Teresa: She had a seizure at school and passed away some years ago. However, the journey of her from birth to seven years old has got me to help hundreds of thousands of women and families to different organizations: speaking, training, coaching, learning, and advocating. And I would have never done that without that journey of Zaria. So, Zaria had all those special needs. And she also opened me up to stuff that I never knew of. I knew about special needs a little bit because my Mom when I was little worked in group homes. And I didn’t even know that was a group home I was going to because back in the day, I ended up having a single-Mom that was divorced. You could go about with your Mom. But that compassion that was instilled to me as a child, it really helped me with my child with special needs. Then the special needs group and different organizations– I’ve worked with Mocha Moms, which is a national organization for women of color that put their children and their families first with children with special needs. That was my goal when I was doing things for there. But then, Zaria had a little sister named Jade that was born. And Jade was a few years younger. But when Jade was born, again, she was another premature birth. So, I have to be on bed rest, all these different things to have children. And when Jade was born, she was typical. She was just a low-weight, birth-weight baby. But then, as she started getting older, she wasn’t crawling. She took a long time to walk. I learned about a lot of different things with Zaria that helped me with Jade. And so Jade ended up being very physically functioning. But emotionally, she was the baby that never stopped crying that I took to the hospital, and she didn’t have colic. She was the baby when I would leave with people – her godmother or whatever – they would say, “Um, call me. She’s still crying.” “Ah, okay.” She was the baby banging her crib up against the wall. Not just crying to get out. She was banging it. So, this led me from the journey with Zaria ended up getting all these certifications for special needs– being a Special Needs Trainor for the Department of Development and Disabilities or Babies Can’t Wait, The Early Intervention for Georgia for Zaria. But then, transitioning to Jade was solely different, because she didn’t have developmental disabilities. I wasn’t working with IEPs anymore. That’s when I learned about the 504 Plans and all that stuff. So, me getting educated to help my children, starting off with Zaria, helped me to educate other people, but they helped me even more for Jade. And so now I have Jade, and she doesn’t mind. Jade says– you know what I can always say is that Jade experiences ADHD and some behavioral challenges but highly functioning. Has been placed in AP classes, a very smart girl. But if I wouldn’t never had the experience of Zaria and all these training and support that we get from other mothers and organizations we just don’t know, I would never know how to function or help Jade. And that’s why I’m here today at the National Federation of Families for Children’s Mental Health Yearly Conference is because of Jade. She’s my ‘why’ for this. And so I’ve been able to advocate now for parents that have children with dual-diagnosis whether it’s developmentally or mental health. I definitely don’t want to be a therapist or anything of that nature. But I have so much training that I know that God, and whomever you want to call it, gave it to me to help my children and other people. And I just can’t imagine not sharing that. And I can’t imagine parents not understanding, once they learned how to advocate for their children, they are their child’s number one advocate, because nobody’s going to advocate for your baby – that part of you, like you.

Dionne: Yes. So as a Mom advocate, what would you say if you had to talk to– and you can fill in this blank with whoever you were addressing one group– and I know you’ve addressed a lot of groups. What would you want them to know about your experience as a mother of children with mental health challenges?

Teresa: Wow, so many things you want them to know. The one is that Mom– that guilt you might have, the, “So why is my child like this?” Or, “How are people going to look at my child,” and all those things. I want them to know that find the treasure in your child, because those hard days when– maybe you have a child that experiences some behaviors or disabilities and is a little bit slower, if you can have that treasure kind of in your head, those days when they don’t seem like a treasure [laughter], when they don’t seem like a treasure, you have something to refer back to because even though it may be hard the way that you have to deal with them, how they deal with you, as society looks at them, they’re your gift. And you have to find the gift that they are for you and the treasure in them.

Dionne: You talked about this because– and the days that they seem like that you are just questioning the universe. Can you tell us about one of those days? And then–

Teresa: Oh, I definitely can.

Dionne: — what and how you worked through?

Teresa: I definitely can. One, I worked through it because I have a great support system. I engaged with other mothers that may experience some of the same things, so that I have someone to vent to one that understands me. Learned that very early on with Zaria. When my friends with typical two-year-olds would talk to me about their two-year old but my two-year old Zaria was really still at three, four months, they couldn’t understand. So, go seek out those supports that are particularly going to be able to support you. So, even with Mocha Moms, it was not a special needs thing. But it was for a stay-at-home moms at that time, at one point for Black mothers. That is who I am. So, I’m going to go seek them out. So with the child that is especially– in a particular experience, one of my children is very– the emotional part is very hard. Sometimes, she has so many things going on that it is overwhelming for me. I was just sitting in a train and then I was sounding– though I’m trained to be– a Mental Health instructor, a Certified Panic Peer Specialist, a Suicide Prevention Gatekeeper, all that, when it’s my baby, it’s a total different thing. I remember those formats. I remember those structures. I remember those systems. But it’s not the same. So, you got to make sure you have support because there are days when I have to walk away sometimes crying from my child. I mean she hadn’t anything to me physically. But my heart is hurt because you see what they’re going through. And they might not even be able to see it. And you know the treasure you have. But right now, it looks more like the garbage truck. And I would say the amount of support you have is very important. And just being real. And remembering where is that sacred space, that treasure, where you have to think back about it, because sometimes you want to just throw in the towel, because we don’t show motherhood being difficult. We show motherhood with this pretty baby and the little kids outside playing. And when you have a child with a need, you have fewer days of that and more days of questioning, “Why me? Why my child?”

So I think to have that support system, to be able to vent with other women that understand or can listen to you, groups that understand you, and the same for your child is important. So my number one piece would be have a support system. Have somewhere you can go. And then of course remembering that treasure because even though it’s H-E Double Hockey Sticks or whatever you call it [laughter], we have to figure out a way to go back to the gift in it, because it’s so very hard especially with the mental health versus the developmental disability. Especially in certain cultures, being a mother of color myself when I had my daughter with cerebral palsy, it was easier for people to see, because she could walk sometimes. She can do stuff. But when they see my child over here having a meltdown, “You better get that baby get a beating. Get her shit. Got no manners,” or whatever. That invisible disability is so hard. So everything– I know all women can do it. But when you have a child with a need, sometimes you got to put on a tough skin, because people say things. So that support, that treasure, and that tough skin altogether.

Dionne: That brings up a good and important point because especially as mothers of color, so many of us, we are experiencing not just our own internal, what I call your internal voice. But then, you literally have the external voice telling you what you should be doing, what you should know. How do you advocate for yourself as a mother because you’re Fearless Mom advocate. I know you’re a fearless mom. How do you advocate for yourself?

Teresa: For taking care of myself?

Dionne: Yes, taking care– it could be taking care of yourself or standing up for you.

Teresa: Again, one, you have to make– write down your own rules. Who and what do you stand for? What’s important for you because I’m Teresa. I might not look like the other Teresa down the road that’s an African-American woman. What are my values? What’s important to me? And what’s important to me is that I live up to who I authentically am and who my family is. That’s one. And then, two, being able to really sit and think about what really is important, what’s not. You know the picture? Because we’re women. I don’t care what color you are. A lot of us fall into this picture thing. And guess what? How much do I really care about that picture or what it– I care more about reality and being happy. So that’s one. But as a fearless advocate, I really try to think about major– I don’t really care what anybody else thinks, because I know what’s going on inside of my house and inside of my mind and what I have to take care of. Like being here at the Federation of Families for Children’s Mental Health Event. A lot of people– they don’t understand that. But I don’t care. It’s about my need. So have put on that tough skin again the way that I, the Fearless advocate, that takes care of me as I think of myself. I put on a tough skin. I do take care of myself, self-care. One of the presentations I speak about sometimes is life beyond advocacy, because at some point you can’t just advocate for your child and do everything for your child as you want to sit over here, and you’re going to have a breakdown or something, too. So that tough skin and not worrying about what others think. And taking care of you and your family. But remembering yourself, too, because so many mothers forget about themselves.

Dionne: What’s your self-care pleasure?

Teresa: My self-care pleasure is– oh, I have so many [laughter] because I love that stuff. But my self-care pleasure really is just quiet space because I’m talker. And I’m always with people. So if I can go on a trip and be away or if I can go– I just recently started doing yoga and meditation. And that has been great, wonderful a way to do it. You might not have funds or something to do things or time– a quick hot shower with some music. And I think really music is one of my main things and ways of self-care, because you can get whatever mode you want. Dancing. I think we think about self-care as if it has to be the spa all the time. And it doesn’t. Or it has to be all these extra things. Just little things to take care of our self because to be able follow these advocacy and these children that experience various needs, they experience those. That’s not who they are. And that’s why I say remember that treasure. Remember who it is. As a matter of fact, my daughter’s name is Jade for a reason, because she’s a treasure. Let me remember. She’s a treasure [laughter]. So–

Dionne: I like that.

Teresa: So you have to figure it out.

Dionne: So I have two last questions. And then I want you to tell us a little bit about your organization and the shout out for your organization, where we can reach you, and everything. What’s your most laughable moment? Because a lot of these, for me, one of my self-care pleasures is just being able to sit back. And sometimes just laugh at what’s going on. What’s your most laughable moment?

Teresa: When your child that experiences a mental health challenge or behavioral challenges calls you on stuff, that’s the most laughable moment. They have to tell you to slow down or tell you to do something. And you hear them repeat back how you talk to them or deal with them. That is the most laughable moment, because I do really want to tell them, “No.” But really guess what, they got this somebody from somebody. And it might not be that you have a mental health diagnosis. But some of the stuff that we complain about our children or concerned about they are mirroring our personalities. And so that for me is the most laughable moment. So for me, I’m always moving and shaking. And my daughter, she’s a mover and shaker. But she’s a little slower. You have to prompt her like I do this or that. But she has to tell me, “Mommy, you need to slow down.” Surprised yesterday at the conference she said, “I’m surprised you didn’t lose your cellphone yet [laughter].” So that was like, “Oh, okay.” I said, “Oh, okay. Well, you know when I’m not with you…” because this is our first conference she’s been to as an attendee where she’s engaging by herself. So I said, “Well, Mommy try this all the time. I have my phone all the time.” She said, “Well, I’m surprised [laughter].”

Dionne: She’s little part of you.

Teresa: Yes, she’s watch me, because she see me put things down and do different things. So that’s my most laughable moment.

Dionne She’s just seeing you. reflecting you back at [laughter].

Teresa: Which is really good because that not caring what people think has been a little bit better for her with dealing with some of her challenges. But she’s learned that from me.

Dionne: Oh, that’s good. That’s important. That’s important. So is there one particular organization, group that you want to do a shout out, you want to talk about right now?

Teresa: So, since I’m at the Federation of Families for Children’s Mental Health Conference, I’m going to talk about my organization. It’s Younger Years and Beyond. We are a local chapter of the Federation of Families for Children’s Mental Health. You will find us on Facebook right now. And just type in The Younger Years and Beyond or Younger Years and Beyond. And we are a local chapter that focuses on mental health and behavioral health challenges for children starting at pre-school through beyond. I started this chapter when Jade was four or five years old when I realized something was going on. And I wanted it to grow with her. And that’s why it’s called The Younger Years and Beyond. We offer support, free and sliding fee scale, because we’re a family-ran organization. We have a fiscal agent, so we do have a non-profit status that we’re under right now. And we provide services for IEPs, 504 Plans. But most of our training to parents as well. So I’m a former trainer for several organizations in Georgia as well as a university for parents with children with special needs as well as some of my Board Members, meaning my Board Members also are very, very strong mental health professionals and staff. So we just do very– what we can. But we mostly have a lot of events. We are a family-ran organization meaning we are family funded and take grants here and there. We’re trying to decide one, going after more. But pretty much we have three events each year. One is a Mental Health Awareness event for children. Then we have a business one like Connecting Organizations. And then this year, we’re going to have a Virtual Mental Health Awareness event for children and families. So we’re going to have a family track, and we’re going to have a children’s track. And I’ve actually been at this conference, and I have booked like two or three ladies–

Dionne: Oh, good.

Teresa: — to already speak. So we definitely are going to talk your agency about all that you do, because we know we are about the motherhood thing here. So that’s we do. You’ll find us on Facebook, The Younger Years and Beyond. And if you can’t find us there, you can always look to Zaria’s Song, and that’s Z-A-R-I-A-S-S-O-N-G like Zaria’s Song because Zaria’s Song and The Younger Years and Beyond are kind of connected because development disabilities and mental health, because the money is separated. People always separate it, but you need you have to do diagnosis.

Dionne: We call it the pathway.

Teresa: Right.

Dionne: There’s many pathways, and a lot of them go through mental health or lead to. We will be sure to provide links to both of those. Or in our sites we have a resource link, and we also– once we put up your podcast, we will provide links. So anybody who listens to this can link. One more? Go ahead. One more.

Teresa: The one other thing that I wanted to say is we also offer training for Mental Health First Aid. We are mental health– I’m a certified Mental Health National First Aid Instructor. And we are adding on. We do it for adults right now. But we are adding on the Children Mental Health First Aid. And we know where our community and our society and our world is right now. So very important that we get that information out there to communities, families, organizations, schools, etc.

Dionne: That is very true. Mental Health First Aid. We can use that training everywhere: teachers, coaches, other parents. Well, thank you very much. I mean this has been a pleasure. This has been– and I hope to continue to talk to you, and work with you in the future. So–

Teresa: I’m so excited.

Dionne: — thanks for joining us.

Teresa: Thank you for the opportunity. I’m so excited. I love your dream. You all can see what she’s dreamed out all for mental health awareness. Thank you so much.

Dionne: Thank you. Thank you.

[music]

Narrator: You have been listening to Ask the Advocate. Copyrighted in 2018 by Mothers on the Frontline. Today’s podcast host was Dionne Bensonsmith. The music is Old 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 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]

 

Just Ask Mom Episode 11

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

In this episode, we listen to a mother of three children with mental health diagnoses who works as a Family Partner with North Carolina Families United. She discusses the barriers families face when trying to get their children services and her own experience of moving her family to another county in order to get mental health services for her child.

Raising a son with Schizophrenia, Just Ask Mom Podcast Series, Episode 1

Anna discusses raising a son with childhood-onset schizophrenia on a Midwestern farm, the journey to the right diagnosis & medications, and what there is to celebrate.

 

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 Anna, the mother of a son with early onset schizophrenia.

Anna: My name is Anna and I’m from the Midwest and … oh, gosh. I went to college for computer information systems, got my degree, worked for the railroad for a number of years in information systems and married a farmer. So it’s quite a diverse life.

Tammy: Yes.

Anna:  Yeah, that’s a little bit about me.

Tammy: Very cool.

Anna: I always wanted to be a mom. Growing up, you know, I always imagined myself with five kids and when I got married to my husband, I mean, I just really imagined our life as a typical farm family, lots of kids and dogs and, you know, running around outside and life didn’t happen that way.

[music]

So we have one son, and he was actually adopted from Russia. He was 14 months old and at the time. We always expected when you adopt a child from an orphanage situation like that that there’s going be some catch up. There’s going to be some things that you need to do to play catch up. Matthew always stayed behind, though. He never was able to catch up and working through that as he got older, more and more issues came out and come to find out when he was 13 he was officially diagnosed with early onset schizophrenia. [He] had symptoms starting at the age of eight and that was a very hard thing to accept as a parent, especially when it’s your only– I mean, it’s always hard, but when it’s your only child and you’ve gone through so much to get this child and um– I went through a pretty major grieving process, you know–

Tammy: Absolutely.

Anna:  So the thing that I want other parents to know: when you’re dealing with a child with special needs and that has such a serious illness, — it’s okay. It’s okay to grieve, it’s okay to grieve for that child that you had in your heart, that you expected, that you always pictured that you would have raised. That is a loss and you shouldn’t feel guilty about grieving for that child, but then you have to move past that. You have to get to a place where you accept that child for who they are. It’s easy to say and hard to do but once you get to that place where you have truly accepted that child for who they are and for their abilities– although they may be different than what you expected, you– you’ll find that things are easier. You’ll find that it’s not as hard to accept where they’re at and enjoy them for who they are and every day becomes easier.

Tammy: This is especially a lesson you have to learn in this particular situation but what you’re saying is true for any parent.

Anna: Sure. Absolutely. For any parent, any child. You can have a child that is neuro-typical but they don’t have the same likes as you do and they don’t have the same interests as you do and you guys are polar opposites and you still have to accept that child for who they are. You may butt heads but you have to realize they are their own individual. Absolutely.  I think for my husband, I’ll kind of speak to that little bit– he’s a farmer. He’s a typical Midwestern farmer and grew up in a very sheltered environment, you know, didn’t ever really have any exposure to the big city and diversity and things like that, and it was, I mean, he had it in his mind his expectations of his child would be that they would help him farm. They would grow up learning that and doing that and that wasn’t something that Matthew could do. That was really hard for him to accept and as long as he wasn’t accepting that, as long as he was fighting that internally, he was miserable. Once he was able to accept that, he could move on with his life and he could be happy and enjoy his son again. And so it’s not just for the child, it’s for us.

Tammy: Absolutely.

Anna: You know, and I’m not saying that everything’s roses once you accept that -once you learn. Some people accept that easier than others and it’s not all peachy keen after that. You still have to fight for your child. I mean, I got involved with Mental Health Advocacy here in our State because there is so much lacking and there is so much that needs to be done yet. It’s not fair. We should not have to become mama bears at the school and fight so hard for what is rightfully deserving of them. And it is still an issue but it doesn’t become all consuming, I guess, once you can accept that I think it frees you up a little bit to stop obsessing about what they can’t do and focus on what they can and then that helps you when forming that IEP [Individualized Education Plan] and when talking to the doctors and trying to find a medication that works, then you’re not as miserable doing all of that I guess.

Tammy: Absolutely. One thing you and I talked about and I was wondering if you’d share here is (and this fits into what you’re talking about with expectations) is how your parenting changes because what your child needs is not the traditional method of parenting.

Anna: Right.  Absolutely. Again, my husband is a farmer and he grew up, and myself too, I grew up in the Midwest. I was raised when I was young on a farm and then we lived in a small town and we were both very much raised by ‘pull yourself up by your bootstraps’ –  I mean with very common sense parenting and spanking was not unheard of. That was just how we were raised and that’s the example we had as parents and so when he was young and things would happen, I mean, we didn’t spank. That wasn’t really what we wanted to do, but we would use sticker charts, we would use timeout, we would use all the things that you could think of, grounding and taking rewards and punishments. We tried everything and nothing ever seemed to work. It was so very frustrating and you would get so angry and frustrated and then you find yourself raising your voice and you’re yelling and it’s constant and nothing ever works and you’re just pulling your hair out.  Once we finally accepted his diagnosis and learned we simply can’t expect the same things. We cannot put as many demands on them. That’s part of that acceptance process that I was talking about as a parent – accepting your child for who they are and what they can do and once you realize that, then naturally your expectations change and so your parenting style does change.

Tammy: Thank you for that. That’s right. So, we ask everyone this. We know it changes from moment to moment. At this exact moment, do you feel like you’re swimming, treading water, sinking? Where do you feel like you’re at?

Anna: I feel like we’re swimming.

Tammy: Wonderful.

Anna: I feel like we are– it just makes me want to cry. I think [laugh] because we have come so far. I mean we came from a place where, I would say five years ago I was not sure I was ever going be able to have my son in my house again. He was violent and we had to place him in the PMIC [Pediatric Mental Institution for Children] and we just didn’t know where to go. We had no idea where to turn for help. We could not control him any longer. I just couldn’t imagine him ever coming back home, ever graduating from high school, ever having a life that was meaningful to him. Let alone something that we could call successful. Today he is getting ready to graduate from high school, he has been back home with us for almost five years and he’s getting ready to graduate high school, he’s going to prom.

Tammy: This is so wonderful.

Anna: He is just– he is excelling in so many ways and I could have never imagined that. So, I mean, we’re in love with life right now.

Tammy: A lot of hard work went into that.

Anna: A lot of hard work went into that. It was a combination of the doctors and finding the right medication, getting the right diagnosis first of all and then finding the right medications, and then finding the right school. We ended up finding this awesome therapeutic school that he went to for about three years and they were just phenomenal. So finding the right school environment and changing our parenting style and having the right support at home. We had a waiver from the State that allowed some in-home assistance, you know, with therapy and things like that and all of those things created this beautiful movement towards putting him on the path to success

Tammy: And now he’s a contributing member of society.

Anna: Absolutely.

Tammy: He’s working.

Anna: He has a job lined up for after he graduates. He’s planning on having his own apartment. I have every reason to believe that he will be successful. Five years ago I couldn’t have imagined that.

Tammy: Right. So, all of those services made all that difference.

Anna: Everything made all the difference. It was not just one thing that I could point to, without one thing, without the others would not have had made much of an impact. I don’t believe.We had to change every aspect of his life to help set him up for success and help him learn about his illness and help him accept his illness because that’s a whole process too.

Anna: And he knows, I mean, I have probably the biggest reason that I feel like he will be successful is because he knows he has an illness. He accepts he has an illness. He knows the medication helps him and he is absolutely adamant about taking that medication because he knows that helps him. So many times with schizophrenia people start to believe that the medication is making them sick –I’m not saying that that might not happen in the future. This is just where we’re at today, but he knows [the medication] helps him and he wants to take it and if that continues that is what will help him be successful and help him work.

Tammy: I just want to sort of have you bring out one other piece because I think this is so important for parents that are in the middle of the journey, like where you were five years ago. You had mentioned he was eight when he started having symptoms but he got his diagnosis of early onset schizophrenia at 14.

Anna: At 13.

Tammy: Oh, at 13. So, there were many years of changing diagnoses and not knowing.

Anna:  For five years, it went from PDD NOS to, well,  first, it started out at age six, that was ADHD, and then at age eight it was Tourette Syndrome and PDD NOS, which is Pervasive Development Disorder [Not Otherwise Specified], and he was having hallucinations at that time and the psychiatrist told us then that some people that are diagnosed with PDD NOS go on to officially be diagnosed with schizophrenia. So, it was thrown out at that time but he was way too young to have that diagnosis. It was just going to be time would tell and then it went on. We went on to add generalized anxiety disorder and OCD and then bipolar mood disorder and all of these diagnosis brought on other medications. And every medication specifically to treat the mood disorder or to treat the anxiety or to treat the ADHD– they all did different things to his system. We just never knew what was doing what, and so it was really hard to suss out what was him or was the medication. And so it was a constant changing of medication and trying to find a combination that worked and this whole time he’s getting worse. He is getting sicker and no one was really addressing the psychosis, which was really the elephant in the room. He was so bad by the time he went into residential that he was completely incontinent both urinary and bowel. He couldn’t get through an hour without a meltdown of some sort and getting angry. He wasn’t sleeping at night at all.He would be up all night. There were times before he went into residential, we were taking turns sleeping in his room. He had trundle bed in his room. We would shut his door, push the trundle bed back up against the door and sleep in his room with him. He wouldn’t sleep but at least we knew he was safe, Then we could sleep. Before that he was up all night and he was doing things that were not appropriate like taking apart light sockets, painting the wall, taking apart his closet doors and at one point he got a hold of some candles and matches and was playing with those, burning spot on the floor. Luckily he didn’t catch the whole house on fire but, he was hiding knives in his room. There were a lot of things he was doing that were dangerous – so that was one piece of it but then he was trying to put his head through windows. [There was a lot of self-harm and there was a lot of hospitalizations in there too. He was having a lot of hallucinations –  seeing knives coming out of the walls and Mario was chasing him around the house with the battle ax. When we first realized he was having hallucinations, I’ll never forget.  He came up to me, he was eight years old and he came up to me and he was crying and he said, mommy, I don’t want to kill myself, and I said, well ,what do you mean you don’t– of course, you don’t want to kill yourself. Well, I don’t want to stab myself but they keep telling me to stab myself and I’m like who? – trying to figure out who they are. Is it somebody at school bullying him? This was on a Saturday I think and so I– no, a Friday –  kept him home from school, called the psychiatrist. Long story short, we ended up going in to the hospital to be evaluated. They didn’t– because he was so young– and he didn’t really have a plan. He didn’t want to die. So they didn’t admit him but that was our first realization. Then in the ER, when they were talking to him, they were asking him, does he ever see odd things and he’s talking about these people he sees hanging from nooses, [it was] very gory. I was just completely shocked. Not long after that we were in the grocery store and he just looked at me with this forlorn long look on his face and he said, mommy, why– why does God make me see all these people that aren’t here, which was really interesting when he said that they aren’t here.

Tammy: He knew?

Anna: He knew they weren’t real and I said what do you mean, do you see them right now? We were in the grocery store in an aisle with no other customers and I said do you see them right now and he said, yeah, and I said, well, how many people do you see and he just sighed rather heavily and he said too many to count. It freaked me out in the beginning–

Tammy: Yeah, of course.

Anna: Of course. I wasn’t ready to accept the diagnosis of schizophrenia even at the age 13, even after five years of going through all those changes and all those med changes and all those different diagnoses. I kept thinking it’s not possible for one child to have so many things wrong with them. It’s not possible for one child to have all these different diagnoses and you know and then they added schizophrenia on top of this I just I couldn’t believe it. There had to be another explanation. So we went to doctors all over, we went to Mayo Clinic, we saw a lot of specialists, thinking well, maybe it’s something genetic, maybe there’s another explanation – another diagnosis that encompasses all of these and to no avail. Nothing else was ever found. I really think– I believe and I don’t know if the doctors would agree but I believe that schizophrenia is the main diagnosis. Schizophrenia is his diagnosis. It’s just that when you’re six and you have developing schizophrenia  – and I should say schizophrenia and mood disorder combined. He definitely has a mood disorder, but when you have these things and you’re six, it looks like ADHD. And then when you’re eight, because the movements and things go along with the schizophrenia – it still is technically, clinically Tourette syndrome but um–

Tammy: But that’s pretty generally defined, right? Like, over a year you have a vocal and a motor tic.

Anna: Absolutely. But if you look at people with schizophrenia a lot of them do have movement disorders. And so does he fit the diagnosis in all these? Absolutely, if you look at it from a clinical standpoint. But you have to look at the bigger picture and say guess what. He has schizophrenia and because he has schizophrenia it causes him to have a lot of anxiety. I mean, schizophrenia is like granddaddy of anxiety disorders! So, of course, it’s going looks like he has generalized anxiety disorder and OCD and he is going be inattentive. So it’s kind of looks like he has ADHD because he can’t focus on anything because all he has is this internal stimulation. And he’s going to have movement disorders because that’s just part of what goes along with it and so, does he have all these diagnoses? No. He has schizophrenia.

Tammy: But that was a really long journey to get to it.

Anna: Absolutely.

Tammy:  I’m really glad that you’re sharing this because there are so many moms who might be hearing this, who are in the middle of it and it just seems like they’re never going to get to a point where things are okay. And you share that they can.

Anna: You can. Absolutely you can. You will get there and it won’t seem like it at the time. Some days it will absolutely tear you apart, but keep pushing, keep persevering, keep being an advocate for your child. Be that mama bear that you need to be and you’ll get there. You know I told my husband we’re going to have this graduation party for my son and I said you know, I’m pulling out all the stops for this graduation party. I said because this is just as much my retirement party as his graduation party because I’ve made a complete career out of his education and getting him to where he is now. Now I can kind of sit back — not that my job’s completely over –but I can relax a little bit and let him kind of begin his life and I feel confident that he can do that right now.

Tammy: Okay, this is about as heavy as life can get, right? So, we ask everyone the same last question. What’s your most laughable moment and I’m sure there have been many but what comes to mind as something that makes you smile through all this?

Anna: Oh gosh. I don’t know if I have that one laughable moment. I know there’s a lot of moments I look back on and think, God, why the heck did I do that? and kind of beat myself up over it. I think back and  it’s kind of funny now– but it’s not really but I don’t know maybe you guys can relate. So, this one time Matthew was five, I want to say and looking back now I know he has some developing psychosis but of course at that time I had no clue.

Tammy: Five year old’s have big imaginations so it’s not easy to know.

Anna: Absolutely, and like I said, we did not like to spank Matthew.

Anna: I mean, I was at my wits end. Nothing was working as far as punishments and rewards and timeouts and I mean I put him in time out and he would just laugh at me. So I decided  I just had enough and we went to the mall. I had to go in real quick. He didn’t handle the stores very well at all at that time but I had to go in there and pick up one item for a baby shower, something real quick, and I told him,“ if you can just bear with me and we’re going run in here,  I’m going get one thing and we’re going to go back out and then we’ll go to McDonald’s.” You know, his favorite place to eat and we will get some chicken nuggets and you know, I said, “just please,” you know, I’m begging with him. I’m bartering with him at the time, and of course, we go in the mall and he starts. He is just being an obstinate little kid hollering about, “I wanna go, I wanna leave”. Looking back I think he was fearful. Yeah. I think he was afraid.

Tammy: I see.

Anna:  And I think he was probably seeing things and hearing things that I didn’t know anything about.

Anna: He just kept hollering at the top of his lungs how he wanted to leave wanted to go. I told him, I said, “Matthew if you don’t stop right now then I’m going to spank you.” He just looked at me. I’m telling myself, it’s come to this. I have to do this. He kept on, he kept on. I said, okay, every time that you holler out that’s one more spanking. So we never did make it to the store. I ended up turning around and going back to the car and no McDonald’s. We were going home and we lived about 30 minutes from this mall. So, all the way home he is laughing at me and giving me this shitty little grin. He says, “your spankings don’t hurt. You can’t hurt me!”, you know just being this little shit. And so I kept adding one to it every time he would back talk me. I would add one to it, by the time I got home I was up to like 36 you know, and I had to follow through.

Anna: I had to spank him 36 times.

Anna: And it was horrible but I did it and it didn’t help. You know, he laughed, he– and it was that manic crazy laugh the whole time through it and looking back now I know that he was dealing with psychosis. I had no clue what psychosis was. I had no clue what mental illness was at that time.
And, you know, that’s another thing through this whole process – I have learned so much about mental illness. I used to be one of those that I looked at homeless people and thought, “if I can get a job, if I can pull myself up by my bootstraps then you can too.”  I didn’t understand what severe mental illness was. I really didn’t and I didn’t have a lot of compassion for those people. I feel like that’s part of why God put Matt in my life because he wanted me to learn that lesson. He wanted me to understand and have more compassion. Not that that moment at the mall was funny but looking back, you know, I mean we have to kind of laugh at ourselves and at the judgement calls we make and not beat ourselves up about it too much because we’re going to make those mistakes. We don’t know. It’s a learning process.

Tammy: Absolutely.

Anna: And we have to continue learning.

Tammy: Absolutely. Well, thank you so much. I really appreciate this. I know many people will benefit from your story.

Anna: Thank you.

Speaker: You have been listening to ‘Just Ask Mom’ recorded and copyrighted in March 2017 by Mother’s on the Frontline. Today’s Podcast host is Tammy Nyden. The music is “Olde English”, written, performed and recorded by Flame Emoji. For more podcasts on this and other series relating to Children’s Mental Health, go to Mothers on the Frontline.com.

Where to begin…

Sometimes it’s hard to know where to begin. Mothering a child with special needs is overwhelming, all the more so the systemic problems preventing kids from getting needed services.

Mothers on the Frontline started with one simple idea:

Mothers have unique insights into the needs of their children.

Not an earth-shattering idea, is it?…
Or maybe it is a game-changer!

What if we created a website that would allow mothers to share their stories, their wisdom, their experiences, in such a way that they would:

  1. Be empowered to most effectively help their children
  2. Reduce the stigmas surrounding children’s mental health
  3. Give decision-makers key insights to help them better help our children

That would be game changing.

My perspective as a mother has often been downplayed or dismissed by professionals, whether they be doctors, educators, or the many therapists who have come in and out of our lives. It is not that these individuals are anything less than caring people who have dedicated their lives to helping children – it is that they have been taught to think of themselves as “experts” on whatever is ailing my child, though they have known him for less than five minutes and only see him through their narrow professional lens.

Here is where the conundrum lies: all of them have valuable knowledge and experience to potentially help my son, but taken together, the result is most often contradictory advice, services in silos, failure to address the whole child, and unnecessary trauma for both my son and family.

I wish my experience were unique. It is not.

A few years ago, I was desperate. I was unable to get the school district to set up and consistently follow an Individual Educational Plan that was appropriate to my son’s medical diagnoses and unable to access medical services he desperately needed because of a three-year waiting list for Iowa’s Children’s Mental Health Medicaid Waiver.

After trying everything, I called my state senator. He generously met me for coffee. That meeting changed my life in two ways:

  1. He helped me understand how to navigate a broken system. (For example, when the director of special education did not return my phone calls or e-mails for months at a time, he recommended that cc my next email to the board of education. I did and got a reply within a half hour.)
  2. He helped me understand that elected officials want to hear from mothers. Politicians are aware that professional associations and their lobbyists have ulterior motives; but they know mothers are focused on the wellbeing of their children.

Wow! Let’s take that in… not only do elected officials want to hear from mothers, but our voice is critical to effecting change.

My first thought was “mothers of special needs children are doing everything they can to survive the day – we are not in a position to be politically active.”  (At the time I was bringing my son to five different therapy appointments a week and working full time -absolutely necessary given the out-of-pocket expenses not covered by insurance. Not to mention my son’s condition prevented more than two hours of sleep at a time – for either of us.)

Circumstances changed that year – my son’s symptoms became much worse and we were no longer confident that he was safe to himself, and possibly to others. After his first mental health hospitalization we made the heartbreaking decision for him to live in a PMIC (Psychiatric Medical Institution for Children), where he lived for nine months.

These months were a time of healing and recovery: for a period of time I knew my son was safe and saw him flourish academically in an educational environment that met his emotional and developmental needs.

As for me, the reduced stress, regular sleep and less complicated schedule of those nine months gave me the ability to look beyond daily survival for more sustainable and systematic solutions. I became a children’s mental health advocate.

Since then my son has finally received the Children’s Mental Health Waiver. Its services have been key to his success living in the community. Our struggles are not over, but each year he becomes better at articulating his feelings and asking for help before he escalates or considers hurting himself.

Advocacy has become a regular part of both of our lives. He has become a Tourette Syndrome Ambassador and works to help others better understand the condition. This work has blended nicely with his passion for politics and he has enjoyed opportunities to talk to legislators at the state and federal level.

As for me, I have spent the last few years contributing a mother’s point of view to state-level discussions on children mental health health policy. This work motivates me to find ways to help other parents share their stories, their wisdom.

Which brings us back to idea behind this website:

Mothers have unique insights into the needs of their children.

The goal of Mothers on the Frontline is to empower mothers to share their wisdom and a platform to do it.

In doing so it can also give decision makers a deeper understanding of how children’s mental health issues intersect with family systems, educational systems, juvenile justice systems, health care systems, communities, etc. In other words, its helps professionals and elected officials have a better view of the needs of the whole child.