Raising a child with ADHD, Oppositional Defiant Disorder and Anxiety

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

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

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

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

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

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

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

Tammy: Absolutely.

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

Tammy: Absolutely.

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

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

Mom: Exactly.

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

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

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

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

Tammy: It’s not easy. 

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

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

Mom: I try to. Yeah.

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

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

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

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

Tammy: Which happens a lot when kids are developing. 

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

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

Mom: We got this down.

Tammy: — we solved it.

Mom: Yeah. We solved it. [laughs]

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

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

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

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

Tammy: Invisible disabilities are tough. 

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

Tammy: I like that.

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

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

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

Tammy: I’m me again. [laughs]

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

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

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

Tammy:

[laughs]

I love it.

Mom: And I’m like, okay. 

Tammy: No sharing Mary. [laughs]

Mom: No. 

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

Mom: Thank you for giving me the opportunity. 

Tammy: Thanks. 

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

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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.

 

 

 

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]

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

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

Advocacy organizations discussed in the Podcast:

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

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

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

 

Transcription

[music background]

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

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

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

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

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

Dionne: Oh, wow,

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

Dionne: I’m sorry.

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

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

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

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

Teresa: Oh, I definitely can.

Dionne: — what and how you worked through?

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

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

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

Teresa: For taking care of myself?

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

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

Dionne: What’s your self-care pleasure?

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

Dionne: I like that.

Teresa: So you have to figure it out.

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

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

Dionne: She’s little part of you.

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

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

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

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

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

Dionne: Oh, good.

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

Dionne: We call it the pathway.

Teresa: Right.

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

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

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

Teresa: I’m so excited.

Dionne: — thanks for joining us.

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

Dionne: Thank you. Thank you.

[music]

Narrator: You have been listening to Ask the Advocate. Copyrighted in 2018 by Mothers on the Frontline. Today’s podcast host was Dionne Bensonsmith. The music is Old English, written, performed, and recorded by Flame Emoji. For more podcasts in this and other series relating to children’s mental health, go to mothersonthefrontline.com or subscribe on iTunes, Android, Google Play, or Stitcher.

[end]

 

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

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

 

Transcription

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

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

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

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

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

Tammy: That’s right.

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

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

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

Tammy: I’m so sorry.

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

Tammy: Oh wow.

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

Tammy: That quick?

Nate: That quick.

Tammy: Wow.

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

Tammy: Wow.

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

Tammy: Really?

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

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

Nate: Yes.

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

Nate: Yes.

Tammy: I’ve been there.

Nate: Oh.

Tammy: Yeah.

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

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

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

Tammy: How much older is he?

Nate: One year.

Tammy: So they’re close.

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

Tammy: Radical Attachment Disorder?

Nate: Reactive.

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

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

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

Nate: Oh, second guesses.

Tammy: Yes, second-guessing, yeah.

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

Tammy: Oh, I see.

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

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

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

Nate: These type of children, no.

Tammy: I see.

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

Tammy: I see.

Nate: Everything’s game.

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

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

Tammy: Safe?

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

Tammy: Really?

Nate: Second grade, your being suspended.

Tammy: At this point no IEP?

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

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

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

Tammy: Oh, wow.

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

Tammy: Absolutely.

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

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

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

Tammy: For the school?

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

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

Nate: [laughs]

Tammy: [laughs] No. Uh oh.

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

Tammy: How is he doing now?

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

Tammy: All right.

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

Tammy: Well, good.

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

Tammy: Yeah, that’s not uncommon.

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

Tammy: They are.

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

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

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

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

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

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

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

Tammy: I like this. Say more.

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

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

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

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

Nate: There is.

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

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

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

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

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

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

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

Nate: The most laughable moment and regarding to him?

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

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

Tammy: Oh my gosh.

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

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

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

Tammy: Like nothing happened? Oh my gosh.

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

Tammy: Nothing .

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

Tammy: Wow.

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

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

Nate: Absolutely.

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

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

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

Nate: No problem.

Tammy: Thank you.

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

 

 

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

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

 

Transcription

Speaker: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with a Grandmother who is raising a grandson with mental health and learning disorders.

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

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

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

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

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

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

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

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

Tammy: Oh, my goodness.

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

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

Grandmother: You need to know the words.

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

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

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

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

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

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

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

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

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

Grandmother: Yes, yes.

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

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

[laughter]

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

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

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

Grandmother: Okay. Thank you.

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

[End]

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

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

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

Resources Mentioned in this Podcast

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

Transcription

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

Tammy: Well tell us a little bit about yourself.

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

Tammy: Congratulations. That’s wonderful.

Paula: Which is a long time. [Laughs]

Tammy: Yes it is. [Laughs]

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

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

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

Tammy: Oh wow.

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

Tammy: That’s your passion.

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

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

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

Tammy: Oh.

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

Tammy: I bet [Laughs]

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

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

Tammy: [Laughs]

Paula: And he stopped. [Laughs]

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

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

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

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

Tammy: Absolutely.

Paula: Which is stressful.

Tammy: Oh yeah.

Paula: Being a mom of a teen is stressful.

Tammy: Yeah.

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

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

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

Tammy: Absolutely.

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

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

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

Paula: Yeah, exactly.

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

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

Tammy: [Laughs]

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

Tammy: Absolutely, absolutely.

Paula: But ours is “plus”.[Laughs]

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

Paula: I’m swimming.

Tammy: Wonderful.

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

Tammy: That’s great.

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

Tammy: That works out nicely.

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

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

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

Tammy: [Laughs]

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

Tammy:[Laughs]

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

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

Paula: No thank you for doing this.

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