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

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

Transcription

[Music plays]

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

Dionne: I want to say thank you very much–

Shanta Hayes: Thank you for having me.

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

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

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

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

Dionne: This is the self-care advocacy.

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

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

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

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

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

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

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

Dionne: That’s important.

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

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

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

Dionne: Exactly.

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

Dionne: Yeah, that’s so true.

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

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

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

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

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

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

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

Dionne: Tell me more about floating.

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

Dionne: And my son is not.

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

Dionne: That’s a good point.

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

[Laughter]

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

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

Shanta: That was like [makes a sound].

Dionne: [Laughs]

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

Dionne: I like it. I love aromatherapy.

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

Dionne: Yes.

Shanta: [Laughs]

Dionne: On top of it you smell nice.

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

Dionne: I want to come to your house.

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

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

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

[Laughter]

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

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

Shanta: Thank you.

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

Shanta: Thank you.

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

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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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Disruptive Mood Dysregulation Disorder and what a good day looks like. Just Ask Mom Podcast Series, episode 8

In this episode, we speak with a mother of three. Her eldest son has Disruptive Mood Dysregulation Disorder (DMDD). She discusses how the condition affects the family dynamic and what a good day looks like.

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 speak with a mother of three. Her eldest son has Disruptive Mood Dysregulation Disorder (DMDD).

Tammy: So why don’t you tell us a bit about yourself?

Mother: I have 3 kids, 3 boys, ages 1 to 12. My oldest son has a mental health diagnosis. He’s right now diagnosed with the DMDD. Disruptive Mood Dysregulation Disorder. He was severely violent, had to be removed from the home for a total of about a year and 8 months, 2 different placements. Now he’s in the home, he’s non-violent for the most part but I have worked and then trained to restrain him, if need be. And I also went to school and have my Bachelor’s degree in Human Services. I switched to human services because of him.

Tammy: Very good. So, before we start, I’m going to ask you to tell us a little bit about yourself before or beyond mothering?

Mother: Well, before mothering, I was a teenager. So there wasn’t a whole lot going on. But it wasn’t until recently that I started to decide that other than mothering, I needed some hobbies. Most of my time was just spent mothering. So, I decided to help with just giving myself something to do other than the kids. I’m really into running. But I don’t like running in the cold. So then I had to figure out something to do outside of running to really get rid some of my stress so, then decide to start painting and like kind like those wine and canvasses people go to. But I don’t drink, so I find them on YouTube and I do them at home. And so, for about their hour worth of work it takes me about 3, but I do the paintings at home.

Tammy: Oh fun.

Mother: And so I really like [it]. I do painting and running.

Tammy: Very nice. So, I want to ask you to pretend you’re talking to your coworkers, right? What would you want them to know about your experiences as a mom?

Mother: Just how much time and effort it puts in, not with just my mental health son but all of my children and that trying to balance, making sure all the kids have the attention they need. I don’t think anyone realizes outside of our household really what it takes to raise a child with mental health needs. What a typical night looks like in our house, it’s not just having fun and getting through homework, it’s a very regimen routine. We have to stay very on top of our routine, we can’t just fly by the seat of our pants. Everything is very much — 3 out of 5 nights during the week we have appointments. The other nights are ball practices. Everything is laid out on calendars. We can’t go off of the routine otherwise we spend the whole night with a kid that’s having a meltdown because we went off of a routine and he didn’t expect that. It’s a very much different type of household and very much a different type of atmosphere having a household where there’s somebody that, you know, has a mentality of a 4-year-old and he’s 12.

Tammy: How do you keep that schedule because a household is not an institution, things happen — like you have to cook dinner and so on. How do you try to maintain the schedule? Can you give examples of how it’s hard to do that at times?

Mother: It is extremely hard to do. It means a lot of times where I’m one-on-one with my son and we both are left out of doing things as a family. On a lot of times, it’s just me and my oldest son. We’re together if he’s having a rough day– it’s me and him having a rough day together. It’s me and him that are together all of the time. Luckily, I am blessed with having an employer, and it’s taken me 12 years to find an employer that completely understands. I work for a school district where the principal came from a large school district and he understands mental health and he allows me to be home when my son needs me to be home because we don’t want my son not to make it through this. And so when my son can’t get out of bed and can’t make it to school, I’m allowed to stay home. But me and my son are very much left out of the rest of the family. My 16-month-old son, him and my husband and my other son go and do a lot without us if my oldest can’t go. And that’s terrible and that’s–it’s very sad, I don’t mind it so much and people, “Oh, poor you.” [but] I’ve lived my childhood, it’s not poor me, it’s too bad for my 12-year-old, it’s very heartbreaking for him. I don’t care what I miss out on, I care that my son can’t live a normal childhood. It’s heartbreaking for him. it doesn’t matter what I miss out on.  I just wish he could have a childhood and that’s where it hurts the most is to see him suffer and to see he can’t get out of bed because it’s Friday and I don’t even know most time why he can’t get out of bed and the voices in his head are mad at him that day and they’re telling him that he’s going to get hurt at school when he knows he’s not going to. That doesn’t make sense to most people.

Tammy: I think it’s hard to see any of your kids suffer in any way and this is particularly difficult, right?

Mother: Yeah. And I cut his chicken wrong, so now he has to go bed for the night, I mean, that’s…what?

Tammy: Do feel like you’re walking on eggshells sometimes?

Mother: All the time. All the time, and really you just can’t get mad at him for it because he can’t control it. You just have to let it go and be like, “Okay, well, that’s how our nights going to go.” Like, alright, cool.

Tammy: So, right now where would you say you are? Do you feel like you’re swimming, drowning, or treading water at this moment? Because for many of us, it differs from moment to moment.

Mother: It does, I feel like everything’s hour by hour. Monday, he didn’t make it to school but today’s Wednesday and so I feel he’s at school and I–so I’m treading water. Meds are doing okay, we’ve made it to everything today and I haven’t gotten a call, so I’m treading water pretty good.

Tammy: That’s a good day.

Mother: That’s a good day.

Tammy: That’s a good day.

Mother: He’s at school and I’m doing what I want to do so it’s a good day.

Tammy: That’s awesome. So, what’s your self-care routine or if more appropriate, survival technique?

Mother: Survival technique would be to know when to walk away. I’m not a single mother doing this–know when to tap out with my husband. If my son is getting– he doesn’t get physically aggressive anymore but verbally aggressive — it’s to know when I’m getting verbally aggressive back or when I feel like I’m getting upset. It’s to know when to tap out with my husband. Or even to listen to my husband when he’s like, “You need to stop and you need to walk away. You need a break.” So that’s my survival technique. Self-care is just to take time for myself. It was my 30th birthday recently and my best friend made me take the day off and we went to the mall not to shop but to do like get our nails done and to get the 5-minute massage. That sort of thing. I’s just taking time for yourself.

Tammy: That’s so important. What do you think is your most laughable moment?

Mother: I couldn’t think of a most laughable moment but it’s just finding something to laugh at. Because every day there’s something funny to laugh at and everybody gets so stressed out. It’s just always finding something funny for the day.

Tammy: Wonderful, is there anything else you’d like people to know?

Mother: I don’t think so. It’s just about reaching out to someone. Somebody’s going through something and just making sure — everybody’s having a hard time and there’s always someone having a bad day. So if someone treats you like crap, you know, just realize they’re going through something.

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

Mother: Yes, 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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