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.

 

 

 

Tank Mentality, Ask the Advocate Series, Episode 6

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

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

Become part of the Tank Mentality Movement:

Follow on Twitter @tankmentality 

Follow on Facebook: tankmentality/

Transcription

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

[background music]

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

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

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

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

Tammy: Sounds like a good incentive.

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

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

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

Tammy: That’s right.

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

Tammy: That’s right.

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

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

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

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

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

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

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

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

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

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

John: Thank you.

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

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

Tammy: Absolutely love it.

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

Tammy: Can you tell us some of that story?

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

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

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

Tammy: Congratulations. That’s huge.

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

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

John: Yes.

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

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

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

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

Tammy: It does.

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

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

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

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

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

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

John: Absolutely.

Tammy: Thank you so much for sharing your story.

John: No problem.

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

John: Awesome.

Tammy: Thank you.

John: Thank you so much.

Tammy: Thank you.

[background music]

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

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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.

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

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

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

Transcription

[Music plays]

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

Dionne: I want to say thank you very much–

Shanta Hayes: Thank you for having me.

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

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

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

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

Dionne: This is the self-care advocacy.

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

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

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

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

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

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

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

Dionne: That’s important.

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

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

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

Dionne: Exactly.

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

Dionne: Yeah, that’s so true.

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

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

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

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

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

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

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

Dionne: Tell me more about floating.

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

Dionne: And my son is not.

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

Dionne: That’s a good point.

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

[Laughter]

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

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

Shanta: That was like [makes a sound].

Dionne: [Laughs]

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

Dionne: I like it. I love aromatherapy.

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

Dionne: Yes.

Shanta: [Laughs]

Dionne: On top of it you smell nice.

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

Dionne: I want to come to your house.

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

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

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

[Laughter]

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

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

Shanta: Thank you.

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

Shanta: Thank you.

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

[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]

 

When they see your child as “different” and turn away. Just Ask Mom Podcast Series, Episode 6

In this episode, a mother and grandmother from Iowa talk about the difficult journey of changing diagnoses, medications, and symptoms during the early childhood of their son and grandson who has Tourette’s Syndrome, OCD, and ODD. They discuss the importance of support groups, recognizing your own needs (especially when they might be different than the needs of your family members) and making sure to honor them. In their case, the need to be social and get out with other people.

 

Transcription

Speaker: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with a mother and Grandmother from Iowa. Today they will be speaking about their elementary school-aged son and grandson who has Tourette’s Syndrome.

 

Tammy: Today we’re doing something a little bit different. We have a mother-daughter pair. I’m going to ask you both to just tell us a little bit about yourselves?

Mom: Okay, I’m an Iowa mom. I have a son who has Tourette’s, OCD and ODD –  major diagnosis there. Yes, some other ones too. He’s at grade school and we live in Iowa.

Tammy: Great.

Grandmother: And I’m the grandmother of a grandson with mental health issues and I’m here to support my daughter and my grandson.

Tammy: Great. So before we get started, I’m going ask each of you just to tell us a little bit about yourself before mothering. What were your passions? Or outside of mothering, what do you enjoy or when you fantasized about the kid’s going off and you having a moment to yourself, what would you do? [Laughs] So just what’s interesting to you as a person?

Mom: Oh boy. [Laughs] Let’s see. I used to like to sleep. [Laughs] Like I would sleep, stay up watching movies on TV and then go to bed late and stay up late and then sleep in late.

Tammy: That sounds so nice.

Mom: Yeah. [Laughing]

Grandmother: And I as the grandmother, prefer reading. Used to enjoy dancing but as the kid’s say, “Oh, yuck! Not that.”[Laughing] and gardening. I like to garden and just be current. Go on little road trips. I do fantasize having a palm tree in my front yard and a big lounge chair on each side.

Tammy: That does — especially during the winters. That’s a very attractive thought.

Grandmother: Yes. Not, not a real palm tree –  artificial – so I don’t have to worry about it dying but –that would be happy. That’s looking at happy in my eyes. Joy.

Mom: If going ‘happy’, I want the in ground pool at the backyard. [Laughs]

Tammy: [Laughing]. That sounds good too.

Grandmother: Just a fantasy.

Tammy: Awesome. Well, I want to ask you to pretend you’re talking to families who are feeling lost. They don’t have a diagnosis yet for their child but they know something’s going on. I’m wondering if you could tell us what would you say to those mothers? What would you say to family members or relatives, grandparents? As families are going through this and trying to determine what’s going on with their child?

Mom: I would just say something that helped me was to just research, research, research. Again, the internet, I googled everything. You know and then we kind of fell into a support group that helped us. There was a children’s therapy center. We didn’t actually go there for therapy because our insurance didn’t cover it. But we found out that they have a support group there on Saturday mornings. So we thought, you know, let’s just go and try this and see if we can meet other people that have kids that may have issues that can help us and stir us where to go. And so that really was our saving grace.

Grandmother: That’s true. I find — getting into this in my estimation, doctors really don’t know a whole lot. And each doctor you talk to has a different field of expertise. And they want to lead you down the path that they think you should go. Even though it may not be the right path. And so you’ll go down that path and you realized nothing is changing. So then you go back and you try and find another doctor. You start all over again and hope for the best. And that may not be, it either, it, it just is — it’s been — with the support group and talking to other parents that have saved us in. It took, it took months before we were actually able to face the fact that well, my grandson had a mental illness. We did not have it at least recognized in the family before if it was there. No one knew about. No one was directed to any special person to take care of it. So it was new to us and we were, we were just lost. We were just– Basically, we were, we were out to sea and we have no life line until we found the children’s center and then we found out that there are other people who are in that similar situation that we’re in.

Tammy: I think one of the things with children’s mental health, in particular, — what you’re saying so far is true of any kind of illness, right? Physical, mental. If you don’t, it — just finding out what it is, you’re at sea until you know what’s going on. What’s particularly difficult with children’s mental illness is their brains are developing and changing. So even if you get a diagnosis, that might change. So you can be lost, found for a little bit, lost again [laughs]. I’m just wondering if you’re can talk about?  Has that been some of your experiences as well? I mean it’s such a journey and how does having a support group help? Even once you find that support group — is that journey helped with the support group as well or…?

Mom: Well, I mean the support group has definitely helped us because there were periods where we would go through really, really deep lows with what was going in the family. Then you kind of get to a point where you can celebrate one day [laughs] One horrible month might have a good day and you need to learn to celebrate that. It just helped us going to the support group and talking with other people because they would sometimes say the same thing and we could learn that the kids’ behaviors might be based on seasonal changes –  or just significant life changes.

Grandmother: Yes. Children don’t like change in their lives. And it often happens. They can’t prevent it. And they don’t know how to deal with it when it does happen to them. We found through dealing with all of this that we have to try to change with them and help them through it. Medication was a big thing. What might work for two weeks will suddenly not work at all and then you get another medication. Pretty soon several medications and it just does not work for their little bodies.

Tammy: Yeah. There’s so much changing at once, it’s hard to know what’s doing what. I think that’s right. What do you want people to know as their trying to navigate this? So reaching out is one thing. I’m hearing.  How do you manage to have hope during that time? To sort of push your way through and take care of yourself during that time? Because it’s rough. It gets pretty dark, when you’re not sure what’s wrong with your child because we want our kids okay. We want to keep them safe.

Grandmother: And when you do find out, often times, you are, sad to say, shunned.

Tammy: Yes.

Grandmother: Because you have a child that’s different from most of the children in the neighborhood. And they look at you and say, “We know who you are but we prefer not to be with you because your child is different. Your child cannot relate to ours”. And, and in our case, we have a child who can relate better with adults than with children.  – He can start talking to any adult on their level and I have had many of them come back to me and say, “What a nice young man you have there. Very pleasurable, very knowledgeable. Very nice”. But on his pure level, he just cannot communicate with them. They don’t essentially get him. And that has been extremely difficult for him and difficult for me because I know he’s trying so hard. But they just don’t see it. And oh the pain just hurts so bad to see them making fun of him. But I don’t, I don’t know how to combat that, we just go on our merry way as best as we can.

Tammy: Yeah. It’s so painful to see your child suffer, but when it’s out of the cruelness of someone else…

Grandmother: …it’s even worse…

Tammy: …it’s worse…

Grandmother: Yes.

Tammy: I think because that can be helped, right?

Grandmother: It can.

Mom: A lot of it is just the misunderstanding. Because they don’t understand what’s going on with that other kid because the kid looks “normal”. They’re thinking, “Why is the kid doing those weird things. Why is he saying those weird things? Why is he acting like that?” Sometimes you hope that if you would just explain it to them, they would get it and they would understand more. And sometimes they don’t. And sometimes it just takes more education and they do end up understanding more and coming along and then they get a better picture of what’s going. I would still say just reaching out to other people because even in the support group we found a couple people within the group that we were able to reach out in really difficult times and just call them or text them or email them and say, “I need you to meet me for a coffee out my backyard”. [Laughs]. Because I’m barely holding on by a string. So just making that point with somebody else. To know that they’re there. And then you talk and you laugh for like 20 minutes. And then you could go back to doing what you were doing. You can go back to fighting.

Grandmother: Yes, it is important to have someone that you can maybe bond with over your problems that might have the same problem.

Tammy: Yeah, I think that’s important. So, we’ve been asking everyone this – and from my own experience, it changes from moment to moment – most people I talk to say the same thing – so at this moment, where do you find yourself? Do you feel like you’re swimming, drowning, treading water? Where do you find yourself?

[Laughing]

Grandmother: At this moment, not last night.

[Laughing]

Mom: I know. Because there’s never a dull moment. There’s always a new development. And always relates to social issues, I swear.

Grandmother: Well your 11th-year-old son likes girls now.

Mom: Oh my goodness.[Laughs]. Uhm, swimming, drowning or treading water?

Tammy: Yeah.

Mom: Treading water. Today?

Tammy: Yeah, today.

Mom: Today, okay. As of this morning, we were swimming.

Grandmother: [Laughing]

Tammy: Let’s talk about that. That’s a big deal because I, I find on my own experience – and I’m talking to a lot of moms –  it changes

Mom: By the hour.

Tammy and Mom: By the hour.

Tammy: Yeah.

Mom: It really does.

Tammy: And that itself can be very almost traumatizing because you can’t play, you can’t think ahead.

Mom: It’s interesting because I was just thinking about that on the way here because I kept thinking it takes me longer to recover from an episode than it does him.

Tammy: (in a whisper) Yeah.

Mom: And so that was part of my thing today going. I need to try and regroup and get it together and pull myself together from one of the episodes that happened last night with him and other kids because of social issues. He recovered. He went to bed last night and woke up this morning and had a good day and it was fine and everything’s good. But the grandmother and the mother are still going [made a sigh of relief] “Oh, boy.”

Tammy: Yeah. What can we do in times like that? Because that’s true, right? There’s this all-of-a-sudden “okay, everything’s fine” and we’re like, “No, it’s not”.

Grandmother: You dropped him off. You thought things were fine. Yet and then you get the phone call.

Mom: Well, we were excited because he’s trying to reach out and make new friends.  And he did make a couple of new friends and he was texting them on his phone. And so then it was one of those things where, “okay, he wants to get together with new friends”. And then you know, just in a course of like 2 minutes of him getting together with new friends, it took a really bad turn. That negative thing happened and then he was like, “I want to leave: you need to come get me”. Sometimes you think you’re doing so well and you think, “Oh good, he’s making friends. He’s reaching out and these other friends are reaching out to him” and then all-of-a-sudden you find out, in a bad moment, the kids really weren’t being friends or that other kids were involved and they were definitely bullies…

Grandmother: …taking advantage of him…

Mom: — “Oh, good we finally going down the right road”. But then you, and in just 2 minutes it subsides down and then you have to re-evaluate, weigh everything again.  Yeah. So, reaching out because I will go out with two girlfriends tonight and have dinner and drinks. “That’s how I’m going to cope.  I was going to cancel that because then my child was having some kids over and I said, “too bad”. My husband is just going take care of it because I’m going out with those girls. Because I need to go out with those girls. And then tomorrow, I’m going to go to lunch and a play with somebody that I know because if I don’t get out of the house this weekend then I’m not, I’m not going make it. Because I’m just at the end of my rope.

Tammy: This gets into the next question: what is your self-care routine, or if more appropriate survival technique?

Mom: Reaching out to other people and socializing. Because I have a husband and two boys at home that don’t meet my needs [Laughing] because they don’t communicate. They all have their own space. They’re very individual. They’re very alone. So then I am not able – being the social person that I am – to talk to them and just carry on conversations with them and to communicate. Because if they’ve done that all day in work or school, then they come home and they just want to come down and have down time. So I need to socialize. I need to get out of the house.

Grandmother: That’s good that you realized that.

Mom: I have, I have to do that. And I’ll realize after a few weeks, even if not getting out of the house, just being home every day taking care of the kids after school or after I get done working –  I just realize I’m very alone. That is when I have to say, “I need to go out and get with other people”.

Tammy: I can relate. What about you?

Grandmother: I have my weekly get-out group. We meet at least once a week and we road trip or we do lunch here or whatever. I have my friends. Sometimes I just take a book. Leave my phone behind. Don’t hear the door bell and just go sit on my porch and I’m in Lalaland by myself. Sometimes you just need to get away from it and find a group situation and I — I do have a good group.

Tammy: Good. So we always end this question. I think as you’ve all heard before, I think we’ve all said this a lot – “If we didn’t laugh, we’d be crying all the time” [laughing].

Mom: Ah-hmm. Which is the honest-to-God truth,  just us to get through.

Tammy: Yeah. And so we just like to open it up. Is there a laughable moment you’d like to share? Something that makes you laugh?

Mom: There are so many but a week ago, I put the beef roast in the crack pot and I had it all sitting on the counter and I had it all ready to go and then I turned it on and went to bed. And woke up the next morning and I checked the beef roast  – it was still uncooked. I thought, “Oh! My gosh, it must be broken. After all these years I must have burned it out”. Well, my husband’s like “Well, it would have helped if you would have plug it in”.

Tammy and Grandmother: [Laughing]

Mom: So we had to throw away 20 dollars-worth of beef roast because I hadn’t plugged the thing in all night long. See know I can’t even tell you what that thing is because I have such brain fog.

Tammy: Right. Would is actually something to talk about? We probably should have a whole show on this because it is hard to think clearly when you’re not getting enough sleep, when you’re having these emotional up and downs constantly, right? It’s hard to think straight.

Mom: Uh-hmm. Yep, it is.

Tammy: So I can relate to not plugging something in. That seems completely normal to me actually [laughing].

Mom: You’re like, “Oh! Shoot.”

Tammy: Yeah [laughing]. What about you, what’s your laughable moment to share?

Grandmother: Well I guess, this morning. My grandson and I went to brunch and we went to this restaurant. Our server was very nice. We had gone there previously during the week for his birthday. We got the same server today that we had for his birthday. And when he came over to set the table he said, “Good morning Bruno”.

Tammy: [Laughing]

Grandmother: Who was our server. And he looked up at him and he smiled and he said, “Good morning”. And he said, “What would you like?” And my grandson rattled off what he wanted and what I wanted. He ordered for us and then Bruno left and he said, “You know granny, he’s a nice server. He’s polite, he’s enthusiastic, he’s smiling.” And he said, “I can name seven things that are positive and why he should get a three dollars five cent tip”.

Tammy: [Laughing]

Grandmother: And I said, “Oh, okay,” and then he named most of them. He said, “No, he’s very good”. And then all of a sudden, Bruno came back and he left extra napkins. Which is something that when my husband goes out, we always ask for extra napkins whether anybody wants them or not.

Mom: It’s an OCD thing. (He really has OCD’s so it’s okay.)

Grandmother: So Bruno must have recognized us and he had the napkins and my grandson is sitting there, “Thanks again Bruno. I appreciated that”. And he said, “your food will be out right away”. And he said, “I bet it will”. So it did, it came quickly and so then we ate and it was very good. And so we left a five dollar tip for Bruno.

Tammy: [Laughing]. I just love how specific his calculation was.

[Laughing]

Grandmother: Yeah. He had seven reasons why Bruno should get it –  but I don’t know why he picked three dollars and five cents.

Tammy: [Laughing]. I just loved that.

Grandmother: He’s good at Math but I didn’t exactly get into it.

Tammy: [Laughing]. Well, thank you so much. I really appreciate you guys sharing your stories.

Grandmother: Okay.

Tammy: Thank you.

Grandmother: Thank you.

 

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

 

 

[End]

Raising a young son with Tourette’s Syndrome, Just Ask Mom Podcast Series, episode 3

In this episode, Emily talks about her journey raising a young son with Tourette’s Syndrome. She talks about the importance of community building on many levels, including strengthening relationships within the family and marriage, her church, her son’s school, and the larger community. By educating those in their lives about Tourette’s Syndrome, her son can be himself and feel part of a supportive and understanding community. She also discusses the importance of intentional planning of self-care and ways to make it happen.

Topics include: Tourette’s Syndrome, Self-Care, Family, Community, Advocating for your child at school.

Resources mentioned in this podcast:

Tourette Association of America  – (Formerly known as the Tourette Syndrome Association) focuses on awareness, research, and support.

Home

The book: The Fringe Hours by Jessica Turner

Transcription

Speaker: Welcome to the Just Ask Mom Podcast, where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline Production. Today we will speak to Emily, a mother of a son with Tourette’s Syndrome, living in Iowa.

Tammy: Well, I was wondering if you could just start by telling us a little about yourself?

Emily: Sure, my name is Emily and I’m a wife and a mom of two kids. I have a daughter who’s seven and I have a son who’s nine, and my nine-year-old son has Tourette’s syndrome. Tourette’s syndrome is a neurological condition that causes a variety of motor and vocal tics. So, in my son’s case he has a coughing tic, blinks his eyes, will have shoulder raises and that kind of thing. So, we have just had the diagnosis for a couple of years, so we’re sort of new to all of this but he is a joy in our family and we’re just really learning how to best care and best parent him.

Tammy: Awesome. So, before we get started I’m just going to ask you to step back for a moment and tell us a little bit about you either before mothering or outside of mothering, a little bit about you.

Emily: Yeah, I have a lot of different interests. My faith is a really important interest of mine, I just really enjoy being a part of a church and that’s just a really important piece of who I am. I also really just love creating things so I love to sew, I love to bake, I love to make cards. They do have to have a finite ending to them.

Tammy: (laughs)

Emily: I’m not the scrap booker that can keep on going forever but I do love those short creative projects. I also love the Olympics and I’m a big Disney fan, it truly is my happy place. So, those are some of my passions and interests.

Tammy: Wonderful, thank you for that. I want you to pretend that you’re talking to other moms, what do you want them to know?

Emily: I would say that the thing that I would want them to know is how community is so important when you’re the parent of a child with Tourette’s syndrome or any special need. That community is a place where you can get support and encouragement but it really just helps you be a super confident mom and to be the best mom that you can be to your child. So, I thought I’d share a few places that have helped me in building community. One of them is just within the family itself. I asked my son before I came here, “What’s the one thing that I do as your mom that helps you as a person living with Tourette’s Syndrome?” He said, “You just make it okay to have it.” A huge compliment from him, but just making sure that our family is a place that he feels safe and comfortable, that it’s a place he knows he can let all of his tics out when he gets home from school, or he can talk to us about how his tics are making him feel. Building community within our family means spending a lot of time together and it’s figuring out what that is. So, for us we love to play games together. We enjoy Disney together. (laughs). Traveling is a big bonding experience too. I’ve heard too that in parenting children with special needs, there’s a high divorce rate, and so, any time [spent] on our marriage is really important to us.

Tammy: Absolutely.

Emily: Our church offers a marriage conference once a year. It’s kind of like a tune up, like you think about taking in the car. We do that or we might read a book together just to have those times when we are really building our family together, so that we can be the best parents to our kids that we can. So, our family is one. Like I mentioned, my faith is really important to me and so our church community is important. Building relationships with our pastors, in particular building relationships with our children’s pastor and the Sunday school director, the Sunday school teacher has been really important just helping them understand what Tourette’s syndrome is and how they can best help him, because as important as our faith is to us and being a parent to a child with this diagnosis, it’s important to him.

Tammy: Absolutely.

Emily: So we’re building our community. We also have a small group that we get together with and ours happens to have other parents with children with special needs. And so, it’s just a great place for us to get to share about the challenges that we have but also to celebrate with each other when we do experience joys in our parenting journey. So, that’s been a really helpful place. Building community with other moms is really important to me. I have a mom’s group of girlfriends that we get together like once a month just to go out for dinner, and again they have children with special needs, some of them, and some of them don’t, but we’re all there to just encourage and support one another in our journey as moms and that’s just been a really important routine for me. I just try to really block that out on the calendar and make that time for it.

Tammy: Can you say a little bit about that, because I think that is so important, right? I’m sure there are so many things vying for your time.

Emily: Yes.

Tammy: It would be easy for that time to be taken over.

Emily: Yes.

Tammy: So, this has been something very intentional you’re doing.

Emily: Yes. I have to keep the “why” in mind. Knowing that taking the time to be with other moms to get that encouragement and support will help me be a better mom, a better wife, a better employee; all of those things if I spend time with them. And so if I know that “why”, then it really helps me to block that out on my calendar.

Tammy: I think that’s important. Especially I think moms, we can have a tendency to be like well, “I don’t want to be selfish,” Right? So, it’s not selfish it’s for all these other people that we’re taking care of ourselves.

Emily: Yes. So, that is a really big one. Another one that has been important to me is the online community. And I was part of a local Facebook group of moms for my area and there was a post one time that another mom had put on there that she had a child with Tourette’s syndrome and I was able to message her. We ended up getting together at a park, meeting in real life. Her son was just a couple years older than mine, so I was just able to just ask her about what the challenges were, that we might experience in the future. She was able to give me some resources in our local area, medical resources, community resources that would help my child. And so, it’s just so amazing to build that online community and turn it into real life community. We also have various support organizations that are online so we have an Iowa Tourette’s support group and even though we’ve only done one thing in person with them, I just know that that’s a place that I can go if I have a question. I’m sure I can message any one of them and they would help me out. They’ve been a really big support in terms of just being there, available. Also, the Tourette’s Association of America has been incredibly resourceful. They do these webinars every month and I’ve just found as a mom, like, I can sit in my pajamas, I can watch it, and I can feel like I’m connected to people across the country, able to ask questions on their chat, or hear what other parents are asking and that’s just been a really big encouragement from the online community for me.

Tammy: That’s wonderful. Was you son able to meet other kids with Tourette’s and how was that for him?

Emily: He was. He was able to meet the son of the mom that I had met online, and that was huge for him.  I think he felt really encouraged getting to meet him. “Hey, there is someone else out there who’s like me.” There’s a huge power in that for me too.

Tammy: Yes, yes there is.

Emily: As both a mom and as a child I think. For him to hear a kid say, “I have Tourette’s too.” It was just so empowering for him to know “Hey, I can do this, you know, look at him, he’s a couple years older and he’s making it through school, and he has difficulties just like I do and we’re working on it.” And so, I think that was just really encouraging for him to meet others too. Yeah.

Tammy: Thank you. I didn’t mean to cut you off though. Did you have others?

Emily: There were others. A couple of other areas of building community that have been important. One is just at his school. Building relationships with people at school and it’s where they’re at such a big part of their day and we have been so fortunate to have a very supportive school that has been wonderful to work with. He’s had numerous teachers that have made the accommodations that he’s needed, that have listened to him, that have worked with us, that have contacted me when there’s been a difficulty, but also celebrated with me when there’s progress made in the classroom. They been great to incorporate literature in the classroom about Tourette’s syndrome, and to just allow the class to hear about it, you know, through a book; which is awesome because my son’s a big reader. And so, to have that be the medium for him was so important. I just loved how they saw that and used that for him. So just building those relationships. Also knowing who in the school, sometimes it’s not their primary teacher. But who those people are in school that are safe for him to talk to when I’m not there. I think every kid loves their kindergarten teacher. So, he loves his kindergarten teacher and just knows that she’s someone that he can go to any time of the day, and if you need support that she’s there for him. Our school secretary is amazing, our guidance counselor, we’ve really worked with her on being able to help him. Especially perfectionistic attitudes are really common with children with Tourette’s and so she has been able to help him develop strategies to handle stress during especially test taking time, is a time when there’s a lot of tics going on usually. And so, it’s been just great to build relationships with those other people in the building. To support him in his journey too. And then the last place we’ve worked on building community is just in the medical community and with counselors in the area as well. just knowing who to call because it is interesting in that you can wake up one day and it’s totally different than the day before. Sometimes you don’t know what’s going to happen and just having those resources, know what they are ahead of time, what’s available in the community has helped me feel more confident as a mom because then I know, “Okay, if this happens then I can try to contact this person” and see what the next step might be.

Tammy: Yeah. I mean on the issue of Tourette’s, because I’m more familiar with that, the medical community is so important because when you have a young developing child sometimes it’s not clear if something’s a tic or a symptom of something else.

Emily: Yes.

Tammy: And so, a lot of sniffling tics are thought to be allergies for a while, right?

Emily: Yes!

Tammy: Things like that. So, it’s complicated. So, I think that’s really important that you have this comfortable relationship with the medical team, to understand sometimes it’s just a kid getting sick, and sometimes that’s a tic. (laughs)

Emily: Sometimes it develops into a tic, and sometimes you just gotta wait and see. But it’s hard to wait and see.

Tammy: Right.

Emily: So, just knowing what those resources are in the meantime has been just incredibly encouraging to me.

Tammy: Wonderful. Thank you so much. So, you sound like you’re doing great right now.

Emily: (laughs)

Tammy: But, I want to ask you, we ask everyone this, at this moment how do you feel – do you feel like you’re swimming, drowning, treading water, where do you feel like you’re at?

Emily: So, I do feel like we are swimming at this point. Well you know, if you do think of it like a pool, I would say I feel like we have jumped into the water, we are not looking around getting our bearings anymore, we know where we are heading. But we’re heading into the deep end of the pool because with Tourette’s Syndrome, things often get worse near the tween and teen years, before they get better. And so, we are in the shallow waters. But, I would say that by building that community that we’ve got some of those flotation devices.

Tammy: (laughs) Right?

Emily: In the water. And we’re learning some of those strokes, and how to swim. And so, we know that we’re swimming right now, but we’re heading into deeper waters. But, I think that because we’ve got the support, I feel really confident about where we’re heading.

Tammy: That’s really important. Sometimes you never know for an individual, but there are these tendencies with a certain condition, and you can try to prepare, right? And be as ready as possible for those. That’s really a good point. So, what is your self-care routine? How do you take care of yourself? Now you said some of this already, but are there other things?

Emily: What I would first say is that it is really difficult, I think any mom finds it difficult to take care of themselves.

Tammy: Yes (laughs).

Emily: I think especially when you have a child with special needs it can be extra difficult to find that time to take care of yourself, but it’s maybe even more important. So, again keeping that “why” in front of you is huge. For me, one of the changes for me in thinking about self-care, because my husband works a lot of hours and so it is difficult for him to be there and to, you know, watch the kids while I go do something. So, finding ways that I can do self-care in a way that I’m not always depending on him is important  – to be able to sort of create it myself. One of the books that I read that was really important was called The Fringe Hours by Jessica Turner. She talks about how you can redeem little pockets of time throughout the day. There’s so much time that we waste throughout the day. She talks about using waiting in the lobby for a doctor’s appointment or waiting in car line at school. Those are times when we’re sometimes just sitting there twiddling our thumbs, but they can really be redeemed for self-care. I’d highly recommend that book to others. But something that I’ve done and learned from her, is to just keep notes. I love writing, it is my love language – I love to send cards to other people. So, just keeping cards in my purse to be able to write those to other people. I just love doing that. And keeping a book I like to read so being able to have a book downloaded on my phone or one in my purse has really helped me to be prepared for those times, because I think something that helps me with self-care too, is having a plan for it. Because when I don’t have a plan I’ll waste it. Just keeping those things nearby that will help me to take care of myself are really important, and then when I do get those big pockets of times, like if my husband is able to take the kids for an afternoon – he’s taking them camping this weekend – so I have a whole weekend and that’s awesome.

Tammy: Oh, that’s wonderful! (laughs)

Emily: In all those bigger pockets of time, when they’re away, just making sure that I have a plan to really accomplish some of those bigger projects that do take more focused energy. So, yeah, I am looking to working on some craft projects later today.

Tammy: That’s wonderful, and enjoy the beautiful weather too (laughs). So, we found, as I talked to other moms, a lot of us agree, the only way to get through some of this is laughing, because if you’re not laughing, you might be crying.

Emily: Yes, yes.

Tammy: Do you have a most laughable moment you’d like to share with us?

Emily: I don’t know that I have like a super laughable moment. But, I would say that, having the freedom to express humor with Tourette’s Syndrome has been huge for us. One of the most helpful things was watching one of those webinars from the Tourette’s association, with Kathy Giordano, who is on it. She talked about how one of her sons had this hair flipping tic and I think they called it the “Farrah Fawcett tic” and it was definitely something, they were definitely laughing with their son. And so, we have tried to find those moments, when we can just incorporate those little moments of humor into his diagnosis. So, for us, and this was my son’s direction totally, but he has a humming tic and he’s a big Star Wars fan. And so, he has dubbed these his R2D2 noises.

Tammy: (laughs)

Emily: And so, anytime that, you know, we hear that humming tic come back, it’s one of his primary tics that comes around a few times a year- It’s like, “Oh, R2D2’s back.” You know, we can just talk all about it and it’s a great way to just lighten the mood with those. I think it can feel really heavy at times, and so just having humor to be able to lighten things has been really helpful.

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

Emily: Sure.

Tammy: We really appreciate it.

Emily: Glad I could.

Tammy: Thank you.

Speaker: You have been listening to Just Ask Mom, recorded and copyrighted in March 2017 by Mothers on the Frontline. Today’s podcast host is 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.

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