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

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

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

Transcription

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

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

Miss Diva: You’re welcome.

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

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

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

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

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

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

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

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

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

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

Dionne: Yes he is.

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

Dionne: Alright, that’s a beautiful analogy.

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

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

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

Dionne: He heard you.

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

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

Diva: And it’s like it’s still there.

Dionne: Yeah!

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

Dionne: Yeah

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

Dionne: That’s great.

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

Dionne: I see.

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

Dionne: Right.

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

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

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

Dionne: Go on.

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

Dionne: Good.

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

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

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

Dionne: Okay.

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

Dionne: Okay.

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

Dionne: Yes, I see it.

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

Dionne: Good.

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

Dionne: Yeah.

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

Dionne: That would be true.

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

Dionne: How does he do that?

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

Dionne: Yeah.

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

Dionne: I see.

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

Dionne: Like?

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

Dionne: I see.

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

Dionne: Yeah.

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

Dionne: Right.

Diva: But it’s still a lie.

Dionne: But in terms of their diagnosis and treatment?

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

Dionne: Right.

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

Dionne: Right.

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

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

Diva: Thank you.

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

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

Dionne: Good.

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

Dionne: Right.

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

Dionne: Oh.

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

Dionne: That is wonderful!

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

Dionne: That’s good.

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

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

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

Dionne: Wow.

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

Dionne: Wow.

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

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

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

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

Dionne: Oh, wow.

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

Dionne: Exactly.

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

Dionne: Right.

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

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

Dionne: Right

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

Dionne: Good.

Diva: As you see my nails there.

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

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

Dionne: They are gorgeous.

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

Dionne: yes. Awareness.

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

[laughter]

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

[laughter]

Dionne: But it stands out.

Diva: Yes!

Dionne: My son calls that his expression finger.

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

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

Diva: Oh. Umm..

Dionne: Not for your kids, but for you.

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

Dionne: You are very young-looking.

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

Dionne: That’s cause your youthful.

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

Dionne: I see.

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

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

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

Dionne: I see.

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

Dionne: Right.

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

[laughter]

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

Dionne: Right.

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

[laughter]

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

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

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

Dionne: Thank you very, very much Miss Diva!

Diva: You’re so welcome!

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

Diva: Thank you.

Dionne: Thank you.

[music]

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

 

 

 

Getting People to Listen, Just Ask Mom Episode 15

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

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

Transcription

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

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

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

Tammy: That’s right.

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

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

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

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

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

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

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

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

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

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

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

Tammy: Yes it is.

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

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

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

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

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

Tammy: When you were young?

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

Tammy: Oh I see.

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

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

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

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

Tammy: So your body remembers this?

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

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

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

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

Tammy: It takes strength to ask for help.

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

Tammy: I see.

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

Tammy: 20?

Cheryl: 20.

Tammy: Oh my gosh.

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

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

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

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

Tammy: How old was he then?

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

Tammy: How heartbreaking.

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

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

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

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

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

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

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

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

Tammy: But luckily that wasn’t that night.

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

Tammy: Of course, he needs you.

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

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

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

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

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

Tammy: Yes, it is.

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

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

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

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

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

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

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

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

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

Cheryl: Mmm hmm.

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

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

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

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

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

Tammy: No one would listen.

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

Tammy: As opposed to a child with a problem.

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

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

Tammy: Absolutely.

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

Tammy: Yes absolutely.

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

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

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

Tammy: How so?

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

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

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

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

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

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

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

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

Tammy: Did that help?

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

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

Tammy: Oh sure, we all are.

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

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

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

[Laughter]

Cheryl: This moment I am swimming.

Tammy: That’s wonderful.

Cheryl: Not fast.

Tammy: Sure. Not in the fast lane but-

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

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

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

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

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

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

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

Tammy: And that helped you?

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

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

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

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

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

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

Tammy: That is a nice idea.

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

Tammy: You’re beautiful.

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

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

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

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

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

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

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

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

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

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

Cheryl: As a mom.

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

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

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

[Laughter]

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

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

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

Sometimes we have to go back to go forward.

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

Cheryl: No problem.

Tammy: Thank you.

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

[End]

 

 

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

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

Transcription

[music]

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

[music]

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

[music]

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

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

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

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

Tammy: Oh, gosh!

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

Tammy: That’s great though.

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

 

Tammy:

 

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

Tammy: [laughs]

 

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

 

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

 

Fidelia: The what? My lived experiences?

 

Tammy: To be able to share that with others.

 

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

 

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

 

Fidelia: Mm-hmm. Yes.

 

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

 

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

 

[laughter]

 

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

 

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

 

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

 

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

 

Fedilia: Because I’m good at it.

 

Tammy: [chuckles]

 

Fedilia: I’m good at it.

 

Tammy: I can tell. [laughs]

 

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

 

Tammy: [chuckles]

 

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

 

Tammy: That’s right.

 

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

 

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

 

Fedilia: Thank you for your time and your consideration.

 

Tammy: Thank you.

 

[music]

 

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

 

[end]

 

The importance of not taking your child’s behavior personally. Just Ask Mom Podcast Series, Episode 4

In this episode we speak to Paula, the adoptive mother of two boys from foster care. One son has PTSD, Trauma, and Autism. The other son has ADHD, Tourette Syndrome, and Anxiety. Paula talks about the importance of not taking your child’s behavior personally, the gift of adoption,  and the importance of laughter.

For a transcript of the podcast, go to https://mothersonthefrontline.com/podcast-transcripts/

Resources Mentioned in this Podcast

99 ways to To Drive Your Kids Sane by Brita St. Clair. – This little book is full of wild ideas and hysterical humor to bring the laughter back into a home with an emotionally disturbed child. Need a good laugh? This book will do it! It includes lots of “one liners” and silly, fun ways to help parents avoid anger around tough topics. Written by a very experienced and loving Therapeutic Mom with years of success helping tough kids heal.

Transcription

Female Speaker over music: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with Paula, a mother of two adopted boys. One who has PTSD, Trauma, and is on the Autism Spectrum. The other son has ADHD, Tourette Syndrome, and Anxiety

Tammy: Well tell us a little bit about yourself.

Paula: Well, I’m a mom here in Iowa. We live in a semi little town but it’s in a metropolitan area so we have lots of great things around us. I have been married twenty-eight years.

Tammy: Congratulations. That’s wonderful.

Paula: Which is a long time. [Laughs]

Tammy: Yes it is. [Laughs]

Paula: Especially  – I mean I am not quite fifty but still, we got married when we were twenty. I mean so we were late to the family thing. We wanted to wait, we didn’t want to jump in. And for a variety of reasons being foster parents and adoption was the way that we decided to go. So we have two boys, they are now fifteen and twelve. The first one we adopted when he was three and a half and the other one was seven. So we are no longer foster parents. I did foster care training and stuff but we are no longer foster parents. Because of the level of needs that they both have, they need our full attention. So I am now a stay at home mom, but professionally I am rehab counselor and mental health therapist.

Tammy: Wonderful. So before we get started I always like to ask people about themselves before they were mothers or outside of mothering. So you told us a bit career-wise so just tell us a little bit about your passions and who you are before we get ….

Paula: Well I love lots of things – my husband and I joke that we are renaissance people so we like lots of little things. Before we had kids we were married a long time, which I highly recommend. I mean we got married young, we were twenty. But we didn’t bring kids into our universe until year thirteen or something. Before we had kids though life was moving along beautifully, you know just the way it does, but it wasn’t easy, actually my husband is a stage four colon cancer survivor.

Tammy: Oh wow.

Paula: So when we were thirty three, he was diagnosed with stage four colon cancer and at that time in 2001,  less than five percent survived stage four colon cancer. So um we were one of that five percent and so that definitely informs the way that we view the universe. We’re in year what?  that’s 2001-  so somebody else do the math  –  fifteen years that he is still you know alive, healthy, we had no recurrence. We went through everything you know all the chemo, liver resection, all the worse things humanly possible. So for us every day is a gift even after fifteen years. We often joke that I should have been widowed  –  had I been widowed what would I have done? That is what we worked on. You know in therapy — how do you deal with your life and literally I would have had a farm house with a bunch of foster adopted kids.

Tammy: That’s your passion.

Paula: So that’s probably what I would have done. I grew up in foster care and my mom had serious mental illness. She was bipolar rapid cycling and so this was something that was always on our radars to be foster parents and given the biology of our bodies, adoption was the way we decide to have a family.

Tammy: Wonderful. Thank you for that. So what would you like people to know?  You have so many rich, great experiences. What would you like people to know?

Paula: When I do trainings on trauma development and the way our brains work, my favorite thing to remind parents –  and it is so hard as moms, oh my goodness,  it is so hard – is to not take it personal. One of the stories that I share in my trainings is about when my son was five. He was very big for his age, he wore size eight, nine or real close. He is a big boy. I mean he is tall now too. But he was a big boy. He would rage and when you have a child that has trauma you can’t allow them to rage alone because it’s not that they need to calm down. You need to be their container. Mentally you need to be a container – a safe place for them and so, one of my favorite ways to remind parents not to take it personal is, he was in the middle of a rage and he just, his caveman brain was just in charge he couldn’t handle what was going on and we were sitting on his bed and I had my arms around him. He was sitting, on my lap and you know he was just in that fully fledged bucking mode and he bucked back and he hit my nose so that it hit the bridge and I got a hairline fracture.

Tammy: Oh.

Paula: If you have ever had one of those, you would rather have your nose broken. The hairline fractures are unbelievably painful but where I teach people not to take things personal is in that moment when he raged and hit me, cause I wear glasses. He hit me and I felt the pain, I knew instantly – this was just the thing that was going into my head: “If I say something now this could undo all the work we have been doing to help him bond and heal. “So I just held him for a moment and I said,  “honey I love you, I need to step out” and I stepped out and went to our bedroom, put my face in the pillow and screamed [Laughs] Some very colorful words.

Tammy: I bet [Laughs]

Paula: Took off my glasses and I went back in and finished helping him calm down. And then we went and figured out what was wrong. That’s a prime example of not taking it personal. Yes, he physically assaulted me. He broke my nose. That hairline fracture  –  I wore a little lightweight plastic glasses –  I couldn’t even put those  on –  but it wasn’t personal. It had nothing to do with me. What was happening was not to me, it was to him.

And so always remembering that, so that’s my extreme moment of even now as a teenager when he does things I have to remember, he is not saying this to hurt me, it’s his coping skill. And even when he does now he will say, he will, you know, use the “B” word and so he never uses it anymore because we turned it into a joke and I am like, “you know what buddy I really am and I am really good at it so thank you for noticing.”

Tammy: [Laughs]

Paula: And he stopped. [Laughs]

Tammy: You took the fun out of it! [Laughs]

Paula: Yes, I took the fun out of it. But also I deescalated it and didn’t take it personal. And so that’s one of my biggest wishes for moms is to not take it personal because it is so hard to not do that.

Tammy: Right. And as is the case with so many of these interviews so far, you are telling us something that is especially true when you have a child with mental illness, but this is true for all parents.

Paula: You know I’m glad you said that because our best friend, I love her – she says when she talks about us to other people or she even complains about her children, one of her children is the same age as mine, fifteen years old and they have been in school several times together and she will complain about her daughter doing something and then she just looks at me and smiles and she goes, yes I know Paula, it’s that, plus. So everything that happens in quote ‘regular lives’ is what happens to all of us.

Tammy: Absolutely.

Paula: Which is stressful.

Tammy: Oh yeah.

Paula: Being a mom of a teen is stressful.

Tammy: Yeah.

Paula: But I like the way that she articulated it. She is like, you know what, you guys have all the normal stress plus. And so it’s not that these techniques that we use with our family aren’t good techniques for everyone, it’s just that we have to be more cognizant of it and more mindful of doing it and the reason we are doing it. Its not accidental, that we use certain language or that we talk about topics more in depth than your average parent. Its purposeful and so I like that because she will do the same topic with her daughter and then she is like yeah, but you guys have to do the plus. So that’s kind of how I view our life work. Like everyone else, plus.

Tammy: Plus, exactly, yeah. Well that’s, I think a really helpful lesson. Is there anything else that you would like people to know in general. I mean you have done, by the way thank you, I always think we need to say thank you when people adopt children from foster care because you are doing not only something wonderful for those children but you are doing something for our whole community.

Paula: As a mom we feel guilt a lot and we feel the weight of the universe on us. And so again our friend that says the plus, I have stopped working for the past four years, almost five now. I got my Masters Degree and then I stopped working. So we were like, oh well that was interesting and so sometimes that guilt kills me. So I like the way that she rephrased it for me and that was, because we have this special needs adoption and we had to really fight for it. Which was really interesting given they were going to put him in an institution. But that’s okay, so we fought hard to get the highest level of special needs adoption but that wasn’t until he was like ten. So, you know we had five years of the first level. The reason that I could not work was because we had two boys that get the special needs adoption and so my friend reminds that, that is my job.

Tammy: Absolutely.

Paula: So it’s not that I am not bringing income into our family. It’s not that I’m not contributing financially. If I didn’t stay at home, and do all of the things that –  school calls and “hey you know this child is not doing xyz can you come and calm him down?” -, you can’t do that with a job or you get fired. So letting go of that guilt that you have to make certain sacrifices and that’s okay.

So you know that’s one thing and then the other thing is that I always I have a hard time saying thank you when somebody says you are great for adopting, because I grew up in foster care. I know that it is good that we adopted them, you know hopefully somebody would have eventually. But from my perspective, I was an infertile woman in my late thirties who cried every time she saw all her friends having babies. So in a way, it’s kind of selfish. I mean it works out both ways I mean I wanted children, couldn’t have children, I had a special skill set that could work with kids with trauma. So it’s like I want to say thank you for saying that but a part of me is always like I needed it too. So its sort of a fifty-fifty, yes we saved them but they saved us. So it works that way, it’s not “yay we are adopted foster parents whoo –hoo”. Its not that simple.

Tammy: I think most of the time when we reach out to anyone else, it’s helping us as much as helping them.

Paula: Yeah, exactly.

Tammy: That’s always the case. That’s right.

Paula: They have definitely enriched our lives in ways that we could never have imagined and they drive us absolutely insane.

Tammy: [Laughs]

Paula: In the same breath [Laughs]  –  but that’s what most parents say.

Tammy: Absolutely, absolutely.

Paula: But ours is “plus”.[Laughs]

Tammy: That’s right! So we ask this question of everybody: right at this moment, do you feel like you are swimming, drowning, treading water ? Where do you find yourself?

Paula: I’m swimming.

Tammy: Wonderful.

Paula: I mean I have really great support. Our school is amazing. It breaks my heart when I hear of families that struggle to get basic accommodations. Shout to the Iowa City School District. They have done amazing work with our kids.

Tammy: That’s great.

Paula: They have always listened to us. They value our opinion, we value theirs. I feel that we have a good support system. I mean I feel isolated sometimes just as a mom because there are no mom groups for kids like mine. Yet sometimes I just want to be hermit so it’s a give and take  – but I am swimming. I’m blessed –  I have an amazing husband who  – we are truly a partnership. I parent a fifteen-year-old easy peasy. Twelve-year-old, not so much. He parents the twelve-year-old easy peasy, the fifteen-year-old not so much.

Tammy: That works out nicely.

Paula:  So it has worked out really well. [Laughs].

Tammy: Yes, that works really well. [Laughs] When you and I were talking earlier you said –  and this seems to be universal among all of us moms  – “ if we don’t laugh, we would be crying all the time”, so we like to ask, what’s your most laughable moment ?

Paula: So we laugh about that because I ask my family, “Like gosh what’s the most laughable moment?” and they are like “we can’t parse this out because we are goof balls.”

Tammy: [Laughs]

Paula: When we adopted the boys and when we brought them into our family, the biggest joke was, you can’t join our family unless you want to be silly and so one of the books that I always take with me when I do trainings is, the book, How To Drive Your Kids Sane. It has all these little great tips of how to just do silly stuff like singing silly in the car with a fifteen year old. Because you do that with little kids but when you do it with older kids they crack up at you being so silly but then they are silly and they lose that inhibition and so we try to be silly. Our family is full of puns, we are constantly trying to out pun each other or alliterations and so laughable moments in our life are always around the dinner table. We always eat dinner together. So I ask my husband what’s a laughable moment for me and he is like, you know after all these years the one that always pops into his head is, I was extremely exhausted, I was working the third shift at Dunkin Donuts and, you know we were what? Twenty two, twenty three years old and, the phone would ring but I’m on the different body clock than everybody else in the house and he says that I would always try to pick up the phone but I couldn’t find it cause I’m asleep. So I would always pick up the alarm clock. And so this is one those plugged in alarm clocks from you know back in the eighties and he is like you would pick up this alarm clock and you like shove it to your face and realize it’s too big and that it’s not a phone and you just saw this look and like, why isn’t anybody answering this phone but I am asleep.

Tammy:[Laughs]

Paula: And so he says that’s always the image that he has of laughable moments about me. But I think we just try to laugh a lot like you were talking about self care –  so being funny and laughing is part of our self-care, of my self care. I am an avid knitter, and that has its own laughable moments whenever I make mistakes and have to undo stuff or you know I make silly things for the kids, yeah, so I can’t come up with one cause there is like ten from just going over to Hurtz donuts this morning.

Tammy: That’s awesome. Well thank you so much for talking with us and sharing your story.

Paula: No thank you for doing this.

Female Voice over Music: You have been listening to “Just Ask Mom”, recorded and copyrighted in 2017 by Mothers on the Frontline. Today’s podcast host was Tammy Nyden. The music is “Olde English” written, performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFronline.com.