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

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

Transcription

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

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

Miss Diva: You’re welcome.

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

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

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

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

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

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

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

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

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

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

Dionne: Yes he is.

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

Dionne: Alright, that’s a beautiful analogy.

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

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

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

Dionne: He heard you.

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

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

Diva: And it’s like it’s still there.

Dionne: Yeah!

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

Dionne: Yeah

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

Dionne: That’s great.

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

Dionne: I see.

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

Dionne: Right.

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

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

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

Dionne: Go on.

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

Dionne: Good.

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

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

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

Dionne: Okay.

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

Dionne: Okay.

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

Dionne: Yes, I see it.

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

Dionne: Good.

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

Dionne: Yeah.

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

Dionne: That would be true.

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

Dionne: How does he do that?

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

Dionne: Yeah.

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

Dionne: I see.

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

Dionne: Like?

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

Dionne: I see.

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

Dionne: Yeah.

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

Dionne: Right.

Diva: But it’s still a lie.

Dionne: But in terms of their diagnosis and treatment?

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

Dionne: Right.

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

Dionne: Right.

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

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

Diva: Thank you.

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

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

Dionne: Good.

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

Dionne: Right.

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

Dionne: Oh.

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

Dionne: That is wonderful!

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

Dionne: That’s good.

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

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

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

Dionne: Wow.

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

Dionne: Wow.

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

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

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

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

Dionne: Oh, wow.

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

Dionne: Exactly.

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

Dionne: Right.

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

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

Dionne: Right

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

Dionne: Good.

Diva: As you see my nails there.

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

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

Dionne: They are gorgeous.

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

Dionne: yes. Awareness.

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

[laughter]

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

[laughter]

Dionne: But it stands out.

Diva: Yes!

Dionne: My son calls that his expression finger.

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

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

Diva: Oh. Umm..

Dionne: Not for your kids, but for you.

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

Dionne: You are very young-looking.

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

Dionne: That’s cause your youthful.

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

Dionne: I see.

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

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

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

Dionne: I see.

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

Dionne: Right.

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

[laughter]

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

Dionne: Right.

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

[laughter]

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

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

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

Dionne: Thank you very, very much Miss Diva!

Diva: You’re so welcome!

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

Diva: Thank you.

Dionne: Thank you.

[music]

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

 

 

 

The School to Prison Pipeline Project

image of black bars against grey background. White words written over bars: Suspension, Restraint, Seclusion, School Resource Officers, Special Education, Institutional Racism, Push Out, Poverty, Ableism, Classism, Zero-Tolerance, Expulsions, Homo-Transphobia

It goes by many names: ‘The School-to-Prison Pipeline’, ‘The School-to-Confinement Pipeline’, ‘The School-to-Court Pipeline’, ‘The Cradle-to-Prison Pipeline’, etc. These names refer to sets of policies and systemic practices that lead to the over-representation of people of color, poor people, LGBTQ+ individuals, persons who have been in the foster care system, and people with disabilities in prisons, jails, and juvenile detention facilities.

Mothers on the Frontline is collaborating with Grinnell College on a project called “Digital Stories for Social Justice: The School-to-Prison Pipeline.” Professors Stephanie Jones (education), Tammy Nyden (philosophy) and Kesho Scott (sociology) received the Grinnell College’s Innovation Grant to create a story archive and new kind of course.

This project aims to document this social injustice by digitally recording stories of people touched by these policies and practices and providing a platform for their stories to influence public narratives about justice reform. The project is adopting the Mothers on the Frontline’s methodology of story work, which insists that the interviewer share salient lived experience with the interviewee, so as to prevent the violation of an outsider coming in and shaping one’s narrative. The interviewee determines how they are introduced, having full control over their level of privacy. Questions are designed so as to give space for the interviewee to take the conversation in any direction they want, while maintaining the natural contours of an informal conversation. These interviews are not a study: there is no particular research question to be answered. Such studies, despite their best intentions, necessarily start out with a narrative that the researcher imposes on the interviewee. This method, rather, is completely inductive. It allows a gathering of the stories the interviewee wants to tell in that particular moment. This methodology is built on the premise that more interesting themes will naturally arise if not held down by preconceived notions from current narratives. We believe that this archive will inform researchers about what qualitative and quantitative research questions need to be asked and studied.

This methodology is also built on the idea that when people are given a safe space, they will tell the story that they need to tell at that particular moment. This is where the story work becomes transformative for both the teller and the listener. This is where the healing of story work is found – in the agency, integration, and holism of story work. (Future posts will discuss these key principles of the Mothers on the Frontline story work methodology and its influences, such as Q’um Q’um Xiiem’s / Jo-ann Archibald’s book Indigenous Storywork.)

This School-to-Prison Pipeline project involves three main components:

  1. The creation of an online digital story archive that is freely available to the public and will be housed in Digital Grinnell. (A subset of the stories will also be housed at the Iowa Women’s Archive at the University of Iowa.)
  2. The creation of a new course: “Digital Stories for Social Justice” that incorporates a Digital Humanities lab in which students develop both story work and digital media skills to inform and influence public discourse on justice reform. The story archive serves as an important anchor for the course. While data stories and various digital story techniques will be studied and practiced, they will never be far removed from the reality that the numbers and visual representations are only meaningful to the extent that they intersect with and respect true, personal lived experience.
  3. Opportunities for students to work with activists, advocates, and scholars to practice the skills they learn in the lab and make real difference in the world.

Mothers on the Frontline is excited to be part of this project and particularly looks forward to co-facilitating two of its events:

October 26-27, 2018: The Digital Stories for Social Justice Archive Workshop: Participants with lived experience will learn how to record audio interviews in their communities for the archive.

May 8-10, 2019: The School-to-Prison Pipeline Story Center Workshop (co-facilitated by StoryCenter). Participants will create and produce their own 2-4 minute video based on their lived experience.

The grant culminates in the first teaching of the course Digital Stories for Social Justice in the Fall of 2019. Students will take a 4 credit interdisciplinary course on the school-to-prison pipeline along with the 2-credit digital storytelling lab. During fall break, students will meet with activists, advocates, and non-profit leaders during a two-day workshop, in which they work together to produce a public syllabus on the issue. Students will consult the organizations to create class projects (print and interactive info graphics, podcasts, and videos) that will become part of the public syllabus and freely available resources to those on the frontlines of this important justice work. Mothers on the Frontline looks forward to participating in that event as well.

Subscribe to our Newsletter for updates on these events and other events and to receive additional resources.

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.

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

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

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

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

Tammy: Sounds like a good incentive.

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

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

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

Tammy: That’s right.

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

Tammy: That’s right.

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

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

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

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

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

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

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

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

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

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

John: Thank you.

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

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

Tammy: Absolutely love it.

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

Tammy: Can you tell us some of that story?

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

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

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

Tammy: Congratulations. That’s huge.

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

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

John: Yes.

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

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

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

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

Tammy: It does.

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

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

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

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

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

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

John: Absolutely.

Tammy: Thank you so much for sharing your story.

John: No problem.

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

John: Awesome.

Tammy: Thank you.

John: Thank you so much.

Tammy: Thank you.

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

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Advocating for Foster Kids, Ask the Advocate Episode 5

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

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

Transcription

ATA 5 not edited

[background music]

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

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

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

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

Tammy: That happens quickly. Doesn’t it?

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

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

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

Tammy: Yes.

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

Tammy: That’s right.

Tammy: Tell us about your advocacy work.

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

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

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

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

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

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

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

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

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

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

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

Andre: I… Yes.

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

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

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

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

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

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

Tammy: It still makes you spin, right?

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

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

Andre: No, they don’t.

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

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

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

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

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

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

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

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

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

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

Tammy: Just they pulled you back in, right?

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

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

Andre: Yes.

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

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

Tammy: Yes. That’s important.

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

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

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

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

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

Tammy: Good for her.

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

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

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

Tammy: That, well, we’re trying.

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

Tammy: Yes, exactly. Exactly.

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

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

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

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

Andre: Yes.

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

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

Tammy: He’ll take over, yeah.

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

Andre: Yes.

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

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

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

Andre: Yes. Thank you so much.

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

Andre: Appreciate it.

[background music]

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

[END]

 

 

Getting People to Listen, Just Ask Mom Episode 15

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

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

Transcription

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

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

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

Tammy: That’s right.

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

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

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

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

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

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

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

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

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

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

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

Tammy: Yes it is.

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

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

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

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

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

Tammy: When you were young?

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

Tammy: Oh I see.

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

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

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

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

Tammy: So your body remembers this?

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

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

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

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

Tammy: It takes strength to ask for help.

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

Tammy: I see.

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

Tammy: 20?

Cheryl: 20.

Tammy: Oh my gosh.

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

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

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

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

Tammy: How old was he then?

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

Tammy: How heartbreaking.

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

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

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

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

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

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

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

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

Tammy: But luckily that wasn’t that night.

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

Tammy: Of course, he needs you.

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

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

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

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

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

Tammy: Yes, it is.

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

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

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

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

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

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

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

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

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

Cheryl: Mmm hmm.

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

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

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

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

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

Tammy: No one would listen.

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

Tammy: As opposed to a child with a problem.

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

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

Tammy: Absolutely.

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

Tammy: Yes absolutely.

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

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

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

Tammy: How so?

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

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

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

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

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

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

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

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

Tammy: Did that help?

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

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

Tammy: Oh sure, we all are.

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

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

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

[Laughter]

Cheryl: This moment I am swimming.

Tammy: That’s wonderful.

Cheryl: Not fast.

Tammy: Sure. Not in the fast lane but-

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

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

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

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

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

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

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

Tammy: And that helped you?

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

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

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

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

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

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

Tammy: That is a nice idea.

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

Tammy: You’re beautiful.

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

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

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

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

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

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

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

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

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

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

Cheryl: As a mom.

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

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

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

[Laughter]

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

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

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

Sometimes we have to go back to go forward.

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

Cheryl: No problem.

Tammy: Thank you.

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

[End]

 

 

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

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

Transcription

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

Tammy: Just tell us a bit about yourself.

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

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

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

Tammy: Oh, wonderful. Yeah.

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

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

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

Tammy: Right.

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

Tammy: Absolutely not.

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

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

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

Tammy: Absolutely.

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

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

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

Tammy: Absolutely.

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

Tammy: Right.

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

Tammy: Right.

Suzette: I’m trying really hard.

Tammy: Exactly.

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

Tammy: Exactly.

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

Tammy: Absolutely.

Suzette: Yes, it can turn people off.

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

Suzette: True.

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

Suzette: Yes.

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

Suzette: Yes.

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

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

Tammy: Right.

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

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

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

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

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

Tammy: Right.

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

Tammy: Absolutely.

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

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

Suzette: Yes.

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

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

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

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

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

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

Tammy: Right.

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

Tammy: Absolutely.

Suzette: Yes.

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

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

Tammy: That’s a good answer.

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

Tammy: Right.

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

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

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

Tammy: Right.

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

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

Suzette: Yes.

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

Suzette: Yes.

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

Suzette: Yes.

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

Suzette: Absolutely.

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

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

Tammy: Right.

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

Tammy: It’s just a day.

Suzette: It’s just a day.

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

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

Tammy: Yes.

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

Tammy: Right.

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

Tammy: Oh, I’m jealous.

Suzette: I swim with mom.

Tammy: That’s sounds wonderful.

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

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

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

Tammy: That’s wonderful.

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

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

Suzette: Yes.

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

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

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

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

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

[end]

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

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

Transcription

[Music plays]

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

Dionne: I want to say thank you very much–

Shanta Hayes: Thank you for having me.

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

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

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

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

Dionne: This is the self-care advocacy.

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

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

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

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

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

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

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

Dionne: That’s important.

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

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

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

Dionne: Exactly.

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

Dionne: Yeah, that’s so true.

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

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

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

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

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

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

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

Dionne: Tell me more about floating.

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

Dionne: And my son is not.

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

Dionne: That’s a good point.

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

[Laughter]

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

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

Shanta: That was like [makes a sound].

Dionne: [Laughs]

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

Dionne: I like it. I love aromatherapy.

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

Dionne: Yes.

Shanta: [Laughs]

Dionne: On top of it you smell nice.

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

Dionne: I want to come to your house.

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

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

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

[Laughter]

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

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

Shanta: Thank you.

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

Shanta: Thank you.

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

[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]