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

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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.

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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.

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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.

 

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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

 

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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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