Every Child Deserves a Miss Honey

As a child one of my favorite books was Roald Dahl’s Matilda.  Having dyscalculia, I related to how Matilda was often misunderstood and looked at as “odd” by her family and classmates.  Like Matilda my mind would also wander, I imagined myself on grand adventures, solving problems, being a hero to my friends and defending myself against class bullies. 

In second grade I took my first standardized test. I remember flying through the reading comprehension and writing sections on the first day but once we got to the math portion on the second day, I hit a wall, I was not able to complete the test past the second page.  When we got the results, the discrepancy between reading/comprehension and math reasoning was so large that they made me retake the test three times, and three times I produced the same result.  Not knowing what to do with me, I was placed in the back of the class – with reading material and given worksheets for math so that I could “follow along with the class at my own pace.” Without remediation for math the worksheets made no sense, but I quickly learned that my teachers (grades 2-4) would not bother me if I read quietly.  I didn’t want to do math and when anyone – teacher or my mom – tried to force me to do math problems, I would become angry and resistive. This behavior garnered me the reputation of being oppositional and lazy.

It was not until the 5th grade that I met my Miss Honey.  As accidental luck would have it the fifth-grade class for Indianapolis School #43 was exceptionally small, so small in fact that the school decided to combine 4/5th and 5/6th grade classes.  For a child with undiagnosed dyscalculia this could have been the beginning of the end (children with learning disabilities are three times more likely to drop out of school than those without learning disabilities).  Luckily for me I had a teacher who, for the first time in my elementary school years, saw me.  Mrs. S  noticed that, although I did not and could not perform basic math tasks such as simple addition, fractions, and telling time, I WAS reading books of all varieties, science, non-fictions, history, and lots of them.  In the two years between testing and entering 5th grade my reading and comprehension skills had only increased. It was not uncommon for me to raid my mother’s bookshelf and I frequently asked her to check adult books from the library so that I could read.  Like Matilda’s Miss Honey, my 5th grade teacher began talking to me during break times, we often had lunch together where we would talk, I also stayed after to school with her where she would tutor me – quietly and painfully in math. When she noticed that I could complete some math tasks if I used my fingers to count (which was forbidden for 5th graders) she devised a “safe” way for me to count using my fingers and the shapes of the numbers.  (Safe in that the math teacher would not see me counting with my fingers and give me an “F”.) She gave me extra time for test and arranged for me to take my standardized test in the library un-timed instead of with my classmates.  When the school wanted to move me to a separate behavioral school because I was falling behind and acting out, Mrs. S called my mother and helped her to complete the appropriate steps so that I could attend RTI (Response to Intervention) classes twice a week for math but remain at my home school. This was 1982 a full 8 years before the Americans with Disabilities Act came into effect, so there was no 504 or IEP, there were no guidelines for teaching and accommodating children with learning disabilities. To this day I have no idea how they managed, but Mrs. S– with the help of my mother – managed to come up with a set of accommodations that would see me through middle school, high school and college. Like Miss Honey from Matilida, my Miss Honey became my biggest champion at school, my best interpreter, and my most important guide.  She helped me understand my disability and then helped me find ways to incorporate that knowledge so that I could better navigate through school and through life. It helped me navigate through graduate school, to a Ph.D. and to my current job as a professor. Every child deserves a Miss Honey and we at Mothers on the Frontline would like to give a heartfelt “thank you” to all the Miss Honey’s working to improve the experience of our children at school.

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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You are everybody you’ve ever been, Just Ask Mom Series episode 19

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In this episode, Diana shares her experience mothering a 17 year old daughter with anxiety and depression.

Mentioned on this episode:

NAMI: National Alliance on Mental Illness: https://www.nami.org/

Transcription

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Voiceover: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a mother’s on the frontline production. Today we will listen to Diana, an Iowa parent with a 17-year-old daughter with anxiety and depression.

Tammy: Tell us a little bit about yourself before or outside of mothering. What are your passions? Who are you? What do you love?

Diana: Well, I enjoy biking and taking long bike rides, not competitively or anything but just kind of peddling along. I enjoy yoga and take some time for that when I can, and I enjoy writing.

Tammy: Wonderful. Do you like creative writing, journaling, what kind of stuff do you do?

Diana: All of that. I used to write for the newspaper when I’m just column and just kind of a life in the day of life and of mom, and that was fine.

Tammy: That’s wonderful, it’s great. I want you to pretend that you’re talking to people who just haven’t had any direct experience with mental illness –   whether in their own life or anyone else in their direct family or friends- they just haven’t had to deal with it. What would you like them to know about your experience?

Diana: What I would like them to know beyond just my experience and just in general but particularly with me if you see me, is that it isn’t always what you think it is and it doesn’t always look how you think it’s supposed to look. Please don’t make the assumption that we might be wrong or dramatic or overreacting, and I know it might seem like that at times, but please just put compassion first and really trust that somebody who is living a situation particularly with their own child, their own family member. They are the expert and if they say something that doesn’t really make sense to you based on what you observe of that child or that person, please just be compassionate and believe that there’s probably a lot going on under the surface or things that you don’t understand about it, and appreciate their honesty and being able to share.

Tammy: Absolutely. Can you think of examples of where people have just not seen –  like they see it one way but something else is going on  – so that you just wish you could just sort of scream?

Diana: Every day.

[laughter]

Diana: Every day. An example that comes to mind is a parent-teacher conference in which I was trying once again to gently and with a friendly face remind teachers that my daughter has a 504 plan, and that she has these accommodations and that they’re legally required to provide those to her. We were having a little difficulty and the teacher said, “Well, I just don’t think she’s anxious, I mean I don’t see it. I don’t think she has anxiety, frankly”, which is kind of a classic example. I actually appreciate the candor that that teacher showed because there are other people who are more passive about it but they certainly seem to be indicating that maybe my hyper-vigilance is causing anxiety. That’s tough to take, it’s a little insulting. There are people who sell my daughter short and kind of limit her based on, “Well if she’s really anxious then maybe she should just do this and not even try this other thing”.

Tammy: I think it’s a really good point because mental illness is portrayed a certain way in the media and movies and all this kind of thing. The assumption is you could see and know what is going on with someone, but someone could be going through a whole lot and look fine on the outside sometimes, or at least be able to do that for a small amount of time whether at school, at work or what have it. Right? It would be easy for someone to not notice because they’re not living with it day to day.

Diana: Right. I think that my daughter is very much like that. I think that girls, in general, are designed with being a people pleaser in mind more often, and so you might not see what you think you’re supposed to see if somebody has mental illness. I will see and hear all about it –  let me assure you  – when the wheels come off the bus later when they’re at home which is their safe space and you know which is that.

Tammy: Talk about that because that’s what I think people don’t understand for so many of us our kids. As soon as they get home to where it’s safe or to the people they’re safe with all hell breaks loose as they say, it gets really rough because finally, they can let go of what they need to from the whole day. Is that something you experienced?

Diana: Yeah, I have experienced that since she started school, honestly since she was five years old. The very first thing that she would report and it was a daily, and I never even put it together the those from school was, “I have a tummy ache”. Like I would say, “How’s school?” and look over and pickup, “How is school, it was good, I have a tummy ache”, every day. So, I went to the pediatrician. Anyway, so the point is that it’s very long-standing and it was a long road for even the medical professionals to realize that it wasn’t physical. Well, it was a physical ailment but what might be underneath it because a child of that age lacks the words or then even knowledge of what it is. But I think going back to what I said earlier about “Please don’t diagnose us or say that I might be part of the problem”, well, if she’s only doing this around you, what is only doing around me because she can. She knows that I will still love and accept her no matter what, and she is barely holding it together – and so are a ton of other people in school every day or at work even. They’re just waiting to be able to come undone because they perceive that to be successful and functional in our society that they have to assimilate. They have to be like the other people around them and so they’re exhausted by the time they get home because not only they had to face several stressors throughout the day, they’ve also had to pretend to feel like other people who aren’t experiencing it.

Tammy:  They’re exerting a tremendous amount of energy. They’re not only in pain internally, they’re exerting so much amount of energy all day long. They get home, they’re exhausted. So what does mom get? Mom gets the exhausted –  so you get the full meltdown? So, us moms, we get all that, so we’re stressed and tired because we have that sometimes full time.

Diana: Right, and then we are the crazy person because we then get on the email at 10 o’clock at night. “The following is what my daughter perceives happened today.” I realized because sometimes I would get emails where they were assuring me that wasn’t the case, I know that’s not the case. I’m relaying to you that that’s what she thinks happened and so please have some compassion tomorrow when you see her again, love up on her, and those kinds of things. You really do come across as the crazy parent because A, they don’t see that and B, as we exhibited, they get late-night seemingly insane emails from a parent.

Tammy: Right, and they’re not seeing what you’re going with your child. I just think there are so many levels of what you just said that’s so important  – that it’s invisible, and we do sound hysterical a lot of the times. But ultimately this is the life of our kid on the line. So, of course, we feel that way, right?

Diana: Yes, and I think that every– well, I want to say teacher but it probably goes beyond that and society, but people who are part of a system should be forced to watch like a documentary or receive some basic level of training on some of these things that they might not know. Because I think if you saw it you wouldn’t question me anymore. You’d be like, “Holy God, that was awful”.

Tammy: It’s not like what it looks like on TV right. I always joke I wish my son had TV autism or TV bipolar, or TV something because it’s done in a half hour and wrapped up then nicely, everything’s solved, right?

Diana: Yes.

Tammy: In real life, it doesn’t feel that.

Diana: Or it goes in one direction on TV. That’s another thing that I would say to people who don’t live this journey, something that I can share is, “Please don’t assume that there is a trajectory and we’re moving across like in one direction. How are things going is a minute-to-minute if not day by day conversation, and so please forgive me when I seem frustrated”. If you say to me, “Well, she seemed like she was so much better. She seemed like she was feeling better”. She did. That was two days ago.

Tammy: I think that’s so important too because as a caregiver isn’t that disruptive and hard to plan and all that because you never know what the day’s going to bring. It’s not like you can say, “We passed this phase, now we’re here”. It’s constantly coming from different directions.

Diana: I have said is like chasing a chicken around a barnyard. That is the movement, it is every single way. Her dad texted me because he was out of state and he had been gone a few days. He said, “How is she doing?”, and I said, “Lots of different ways. You missed four whole days, she has had 18 different plateaus”

Tammy: “In the last two seconds or, yeah.” No, I think that’s really important because it does change constantly. So, as you think about the journey going on with your child, what has really been a barrier to getting the help your child needed or something you tried that just didn’t work in your case that might be helpful for people to know that this was a barrier?

Diana: There have been a lot of barriers and since it did start when she was very young and progressed through these years, and became more discernible to the untrained eye, so I would say some of the barriers along the way were her dad and I. Like our lack of understanding what was really going on and always well-intentioned but sometimes probably detrimental plans that we did. I have a background in behavioral health, so we did a lot of like charts and if-then and first-then and I’ll know you’re ready when this. We have always wanted to be helpful but haven’t always known what the hell we were doing.

Then at the point where we were getting– she had a physical and her blood pressure, she was a little girl, off the charts. They said, “She does seem to have an amazing amount of anxiety. We were given an eye test and she seems to be having like a panic attack. We better bring her back in a week because that’s really not healthy for her to have that high of blood pressures”, so when she came back in a week and they just did a blood pressure and they were taking more of a mental health approach, they referred us for psychiatry at that time because of the high level of anxiety that they saw just at the physical. It was something that did not work. It was a bad fit. It was a psychiatrist with no bedside manner, it was awful.

I have some background in this area and I will say it was awful. So, that was really limiting  – medical appointments that are a trigger for her.

Tammy: That’s not easy in this situation.

Diana: Yes, and you get the person to the appointment and then it blows up also, it was not good. So, that kept us from getting medical intervention for a whole another a year because that went so poorly, and her dad felt like, “this is– you know what I’m talking about, which is that she doesn’t have a mental health issue. So let’s stop coming at her with it and stop projecting things onto her.” That was something– school is something that hasn’t worked and it hasn’t worked for a long time but we’ve thrown a lot of things at it. Seventh grade was where it really hit the fan, and we realized she could not handle it and she’s breaking down every single day.

We dual-enrolled her and then after winter break had to just pull out entirely and home-school, but during that time we also were able to get her therapy and medication because it was becoming so abundantly clear that she needed more intervention, and that was seventh grade. Then in ninth grade again she went to school in eighth grade and it did work. She was on medication things seemed to be going pretty well and she had learned the building in the system which was doing well in the seventh grade. But then in ninth grade when she’d make another transition and another change just the school anxiety just really ramped up and to the point where now she is home-schooled and she’s not in the public school system because they just don’t have what she needs there, and she cannot deal with the many levels of stress.

Tammy: Can you talk a little bit about that because when it comes to children’s mental health as opposed to adults and I’m sure this is true for adults but not at the same level, kids are going through a lot of changes. You mentioned like structural changes, huge changes from elementary to junior to high school, and what your days like and what your life’s like, and your social world is like. But physically, our kids are changing immensely between childhood, adolescence puberty so their bodies are changing. So, sounded like your daughter was doing well with medication and then she wasn’t, and that seems typical for a lot of families I know. Something works and then all the sudden it doesn’t. I know that happens to adults but I think for children when you’re going through so many physical changes, social changes at such a phenomenal level it just feels like you’re constantly starting over again. Is that sound right or?

Diana: Yes. That’s actually been an added layer to this struggle. Starting in ninth grade she became med non-compliant, which was a very big hurdle. We had allowed her to go off her medication. She was doing really well in eighth grade and felt that she didn’t need it and so that was done with our blessing but then in the 9th grade when she was really struggling, my mantra has always been, “I’m not saying you have to go to school. I’m saying that everybody who is mentally and physically healthy is at school today. If you’re not we need to be looking at what’s underneath, and that’s what we need to be doing. I don’t need you to go to school just to have geography of being in that building. I need us to look at why you can’t feel like you’re successful there and why it is putting you past a point to be there”, and so these are the things that we can do.

She just felt like nothing ever works. It doesn’t help anyway and so she was on– we got her to do a medication that, of course, this is I’ve heard so many people share this journey and frustration, that medication did not work, and so for her, it was fueling the, “I told you nothing works”. We had our four to six weeks, went off of it and then the next medication that was prescribed she just was never compliant enough for us to realize if it was working or not. That was a huge struggle and then in a meantime, I think what am I going to do and she’s missing school, and again we’re going back to our behavioral things which were not the point. It was not the point in her ninth through a tenth-grade year.

Another thing that we didn’t identify was depression was starting to take over anxiety and we were still considering it to be anxiety, though the medication often is the same. But the way I might approach things with her, recognizing that it’s depression, not laziness or avoidance, that kind of thing. We’ve been our own worst enemy a few times and–

Tammy: Well you have to be gentle with yourself about that. First of all, everything you said about that, what I love about this podcast is I have parents who don’t have children’s mental illness go, that’s true for all parents too. Every parent messes up and tries a bit. We all learn as we go but here it’s really hard because as you’re saying you don’t know what’s working.

Diana: You feel like you’ve got to be …

Tammy: You don’t have a control, right?

Diana: Right.

Tammy: You can’t take control of your kid and say what’s working or what’s not.

Diana: Particularly with the medication, I just feel like I am putting pellets into a cage and hoping for the best. We’re on another new medication right now that we’re in the four to six weeks range, and that doesn’t appear to be helping either and then you have to decide if you want to up the dose or try something different and go another. In the meantime, it is very painful to be inside their skin and you feel rather helpless.

Tammy: It’s just hard to watch them suffer.

Diana: Yeah, and not everybody going back to the people who don’t live this day in and day out, and everybody sees that they are suffering. Most of our kids are amazing actors and actresses, and they want to be accepted and be part of a group and be normal.

Tammy: I would add to that that most of our kids that have mental illness are incredibly strong. The strength it takes for them to do what they do is immense. If I’m hearing about your daughter and she must be an incredibly strong person to be able to make people think she’s just fine when she’s dealing with all that, it has to be really hard to get through.

Diana: Yeah, and she actually at a point last fall where she did sort of have a full breakdown, and that is nothing that I had seen before, and it was like someone broke a toy almost. Like she became monosyllabic and she is somebody who never left the house not looking on point, she shuffled around. When I would need to take her to appointments she would still wear her pajama bottoms and I’d have to hand her her shoes and the light behind her eyes had gone out and so I do think in that time. Also, she was incredibly strong because just staying here like was my main goal and because I could see that the weight of the pain was almost unbearable, and so at that time she couldn’t. She tried a couple times to leave the house and she had some friends who really hung- and like for being teenagers -they really hung in there and didn’t give up on her over the months. She did try to go out and see them a couple times and didn’t make it, but I was so proud of her for one time we got all the way to the door, all she had her hand on the door.

Tammy: Wonderful.

Diana: Yeah, and now she’s able to leave the house and go see her friends and things and–

Tammy: That’s great.

Diana: Yeah, so I think that there are little wins and you just have a different life, you celebrate different things.

Tammy: Absolutely, but it’s so important to celebrate them and recognize.

Diana: Yeah.

Tammy: Yeah, absolutely. So, what has worked well what in trying to get help for her things that have worked, that you’re like, “Thank goodness that that worked that way”?

Diana: I think having some background in this area was extremely helpful. Not that it helped me deal with her necessarily better but I knew people and I knew therapists, and I already had therapists that I had worked with that I knew had done an amazing job or did good work and put some really challenging kiddos. I felt like I’m very lucky that I was able to handpick because finding a fit is a huge part and you can have a talented therapist and a person who’s willing to do therapy and have that not been a fit. I feel like that’s been a blessing and that has really worked well like being able to find providers, and I feel like one of the things that was working well and I’ve changed my tack duck on it, but I first was thinking when she had that I want to say break down that I would share that with people because I have felt strongly I have to be part of reducing stigma. Now I am completely backtracking from that because in order to reduce stigma you sometimes need a community or a society that’s more educated and more well informed, which is why when you ask to what I talk to him what would I say because this is not mine to tell necessarily. It’s my daughter’s and she doesn’t want it shared and now I can kind of see why because people don’t understand, and they sell her short or sell us short or feel like, “We might be wrong in some way”.

Tammy: Absolutely.

Diana: It’s- it’s very challenging, and so that is something that has worked well too is my daughter. My daughter is a fighter and so having her has worked well.

Tammy: Sounds like she’s awesome?

Diana: She is.

Tammy: I think that sometimes really hard is when the world doesn’t get to see how awesome our kids are because maybe they can’t get out the door, or maybe you’re seeing a different side. You’re not seeing the true person, you’re seeing the illness or you’re not seeing anything. I think that’s the one thing we can say is, “Our kids are awesome – we get to yell that”.

Diana: And I recorded her too, often with me having fun, and she will tell me to stop or tease me, but I say “No”, I’m like, “This is you” and later she’ll ask for my phone and she’ll look at those videos and I want her to remember.” This is you too –  on the couch having a bad day, that’s not all you are – you are everybody you’ve ever been”.

Tammy: I like that. I like that one. So, right now because as we said it changes moment to moment to moment, in this moment do you feel like you’re swimming, drowning, treading water, how are you right now in this journey?

Diana: Right now I would say I’m treading water at best but that’s really me. I don’t know that my daughter has changed that much. I think that a couple of things maybe for me and my ability to just be copacetic has changed and maybe that’s just the ability to have long-standing care. It’s a lot different – my energy level now, than it was a couple of years ago. My daughter might be exactly the same but I might worry incessantly one day and be completely okay the next. I feel like I can’t leave her one day and feel like she’ll be fine the next.

Tammy: Let’s talk about that because I feel like we don’t honor enough that we too are human beings with emotional lives. Sometimes when you’re so busy taking care of a child who has emotional struggles, we’re so busy trying to help them with their emotions that we don’t allow us, ourselves,  you know what I mean? Like we’re just, “Okay, I’ll take care of myself later. I’m just taking care of your emotions”. It’s some days I can deal with my son’s issues on some days they really get to me, and he might be exactly the same both days.

Diana: Yeah, one hundred percent, I think that one thing that’s important is getting some sort of therapy and care for your own self and self-care, and I have neglected that a little bit. I have done it and not done it over the years but–

Tammy: You’re not alone there.

[laughter]

Diana: But that is definitely something that I would recommend because you heal some, just being able to share things that it would not be productive to share with your family because it escalates some situations.

Tammy: Absolutely. You also said something that worked well for you that our listeners who may not have the benefit of being in a profession where they feel like they have that network, they can still network. Like through support groups, through the advocacy networks that you can create a network where you know people in the field. That’s very helpful to have that, and so that’s something to think about because I know if you don’t have that you’re like, “well where do I go?” but you can start trying to build that network of other families who’ve been through it, talk to their providers and get to know who’s out there, and who’s doing what. I don’t know if you agree with that or not? It just seems like you’re right knowing lots of people in this realm to be really helpful.

Diana: Yes, and I think that even if you don’t know anybody in most areas, there is NAMI or something along those lines that has a support group for family members and those can be so beneficial on so many levels. Not only are you feeling less isolated because you have somebody who shares your experiences and that can just feel affirming, but then you also have people who have tried 14 therapists and found one who is good, and that is a huge resource. So, I would strongly encourage that and have done that myself and it is something that I think we all need and deserve is to not feel alone.

Tammy: Absolutely because no one in this situation is alone.

Diana: But you can feel very much like that.

Tammy: It feels like it but when you look at the numbers it’s so common, which is so sad that we’re feeling alone when we’re surrounded by others who are feeling alone in the same reality. So, what is your self-care routine or more appropriate survival technique? What do you do to take care of you when things are getting rough. You mentioned some things that like yoga I can imagine really helps, like what do you do?

Diana: Yes. Well, I try to keep a good balance of things in my life and I actually was doing some volunteering things in the community. I’ve had to back away from that and again, those are things that can ebb and flow. Right now where my daughter is I’m not able to do that, but when you help you heal and you’re not so directed inwardly on my own issues and my own thing, and if you’re being of service to others, I think that it’s therapeutic. In my experience, it has been hugely therapeutic. It gets you outside of your own head and you’re doing something productive and you can feel good about that. So, that that has been and I’m sure it will be again and I enjoy doing that. Yoga, yes absolutely. I can tell sometimes if I started my day with yoga because when things come at me I react a little more even keeled.

Sometimes it is just indulging a little. I was in a ridiculously complex and challenging life space in right around between Thanksgiving and winter break, and the therapist that I was chatting with said, “What are you doing for your own self?” I said, “Well, this morning I had a fudge brownie and layered peanut butter on it, and I just enjoyed every morsel of that brownie. I just took that moment and really picking up on some of the things that are shared as part of strategies and coping strategies, and those kinds of supports, for people with mental health is also really good for us as well. Mindfulness is something that I would encourage everybody to look into because you can pull yourself out of a vortex that you might be slipping into because of your situation which is very real, but it doesn’t benefit anybody to just kind of lean into it or wallow.

Tammy: Absolutely, and that fudge brownie was real too?

Diana: Yes,

Tammy: So, it was okay to be with the fudge brownie for a while.

Diana: I was happy  – maybe bad for the hips but good for the soul.

Tammy: Absolutely, I love that. So, what’s your most laughable moment. Sometimes if we didn’t have laughter it’d be a lot harder to get through this. What makes you laugh about when you think of this journey?

Diana: I think one thing that was a laughable moment that is not necessarily laughable now, actually I guess it is. I didn’t realize that my daughter had started to self-medicate and that was tough because I felt like maybe there’s one thing we didn’t have going wrong. Surprise! So, when I first experienced that and she was under the influence and it actually led to a discourse that wouldn’t have probably otherwise have happened. I remember at one point things were very escalated on her end and she was yelling at me, and she said, “Why aren’t you yelling back? Why aren’t you fighting? You almost look like you’re smiling. What’s wrong with you?” and I said, “I’m just happy we’re finally talking”.

Tammy: [laughter] I love it. I bet that annoyed her though.

Diana: Well, right then, to be fair, that wasn’t out of the ordinary. It was actually that better out than in. Sometimes I think parents protect our children, and keep in mind that our children try to protect us, and they did. They perceive things as being good and bad even when we try and direct them not to, they don’t want us to necessarily see dark ugly things, and you need to, like I need to know that’s there because we can’t address it or fix it or get to the root, and pull it if I don’t ever even know.

Tammy: Thanks for saying that. I don’t think that’s something we’ve discussed yet and any of these podcasts but is so important, our kids do try to protect us. They don’t want us to know all the horrible things that are happening inside their heads and that they struggling what.

Diana: And that’s dangerous.

Tammy: It’s very dangerous.

Diana: And I can see not wanting people to know, and I’m sure it’s very vulnerable but you have to be able to let that out and give that some space too.

Tammy: Thank you so much for talking to us. I really appreciate it – you sharing your story with us.

Diana: Thank you.

[music background]

Tammy:  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 Flame Emoji. 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, Stitcher or 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 a school the Prison Pipeline, an issue importantly connected to children’s mental health and well-being. If you would like to support our work please visit our website and make a tax-deductible donation at mothersonthefrontline.com.

[music]

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

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

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

Transcription

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

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

Miss Diva: You’re welcome.

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

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

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

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

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

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

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

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

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

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

Dionne: Yes he is.

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

Dionne: Alright, that’s a beautiful analogy.

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

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

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

Dionne: He heard you.

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

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

Diva: And it’s like it’s still there.

Dionne: Yeah!

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

Dionne: Yeah

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

Dionne: That’s great.

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

Dionne: I see.

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

Dionne: Right.

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

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

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

Dionne: Go on.

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

Dionne: Good.

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

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

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

Dionne: Okay.

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

Dionne: Okay.

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

Dionne: Yes, I see it.

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

Dionne: Good.

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

Dionne: Yeah.

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

Dionne: That would be true.

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

Dionne: How does he do that?

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

Dionne: Yeah.

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

Dionne: I see.

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

Dionne: Like?

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

Dionne: I see.

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

Dionne: Yeah.

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

Dionne: Right.

Diva: But it’s still a lie.

Dionne: But in terms of their diagnosis and treatment?

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

Dionne: Right.

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

Dionne: Right.

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

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

Diva: Thank you.

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

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

Dionne: Good.

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

Dionne: Right.

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

Dionne: Oh.

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

Dionne: That is wonderful!

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

Dionne: That’s good.

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

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

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

Dionne: Wow.

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

Dionne: Wow.

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

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

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

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

Dionne: Oh, wow.

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

Dionne: Exactly.

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

Dionne: Right.

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

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

Dionne: Right

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

Dionne: Good.

Diva: As you see my nails there.

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

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

Dionne: They are gorgeous.

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

Dionne: yes. Awareness.

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

[laughter]

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

[laughter]

Dionne: But it stands out.

Diva: Yes!

Dionne: My son calls that his expression finger.

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

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

Diva: Oh. Umm..

Dionne: Not for your kids, but for you.

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

Dionne: You are very young-looking.

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

Dionne: That’s cause your youthful.

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

Dionne: I see.

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

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

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

Dionne: I see.

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

Dionne: Right.

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

[laughter]

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

Dionne: Right.

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

[laughter]

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

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

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

Dionne: Thank you very, very much Miss Diva!

Diva: You’re so welcome!

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

Diva: Thank you.

Dionne: Thank you.

[music]

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

 

 

 

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

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

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

Transcription

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

Tammy: Just tell us a bit about yourself.

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

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

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

Tammy: Oh, wonderful. Yeah.

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

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

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

Tammy: Right.

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

Tammy: Absolutely not.

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

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

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

Tammy: Absolutely.

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

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

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

Tammy: Absolutely.

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

Tammy: Right.

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

Tammy: Right.

Suzette: I’m trying really hard.

Tammy: Exactly.

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

Tammy: Exactly.

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

Tammy: Absolutely.

Suzette: Yes, it can turn people off.

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

Suzette: True.

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

Suzette: Yes.

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

Suzette: Yes.

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

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

Tammy: Right.

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

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

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

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

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

Tammy: Right.

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

Tammy: Absolutely.

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

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

Suzette: Yes.

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

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

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

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

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

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

Tammy: Right.

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

Tammy: Absolutely.

Suzette: Yes.

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

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

Tammy: That’s a good answer.

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

Tammy: Right.

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

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

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

Tammy: Right.

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

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

Suzette: Yes.

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

Suzette: Yes.

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

Suzette: Yes.

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

Suzette: Absolutely.

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

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

Tammy: Right.

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

Tammy: It’s just a day.

Suzette: It’s just a day.

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

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

Tammy: Yes.

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

Tammy: Right.

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

Tammy: Oh, I’m jealous.

Suzette: I swim with mom.

Tammy: That’s sounds wonderful.

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

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

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

Tammy: That’s wonderful.

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

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

Suzette: Yes.

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

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

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

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

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

[end]

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

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

Transcription

[music]

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

[music]

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

[music]

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

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

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

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

Tammy: Oh, gosh!

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

Tammy: That’s great though.

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

 

Tammy:

 

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

Tammy: [laughs]

 

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

 

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

 

Fidelia: The what? My lived experiences?

 

Tammy: To be able to share that with others.

 

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

 

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

 

Fidelia: Mm-hmm. Yes.

 

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

 

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

 

[laughter]

 

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

 

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

 

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

 

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

 

Fedilia: Because I’m good at it.

 

Tammy: [chuckles]

 

Fedilia: I’m good at it.

 

Tammy: I can tell. [laughs]

 

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

 

Tammy: [chuckles]

 

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

 

Tammy: That’s right.

 

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

 

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

 

Fedilia: Thank you for your time and your consideration.

 

Tammy: Thank you.

 

[music]

 

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

 

[end]

 

Just Ask Mom Episode 11

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

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

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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