Bipolar in the teen years and beyond in rural Iowa, Just Ask Mom episode 18

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Jill discusses caring for her son whose bipolar disorder surfaced during the teen years. She describes the lack of resources in rural Iowa, the criminalization of mental illness and how that affected her family. She explains how this journey as a mother makes you learn who you are as a person and how strong you can be.

Transcription

[music]

Female Voice: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers On The Frontline production. Today we will listen to Jill, a mother from Iowa, share her story about raising a son with bipolar disorder.

Tammy: Thank you for doing this. We really appreciate you being here.

Jill: Absolutely.

Tammy: Before we get into a lot of the content could you tell us a little bit about yourself before or outside of mothering, who are you? What are your passions? What are you interested in?

Jill: It’s a great question. Well, first of all, I think I’ve known since I was five years old, probably or even before that I wanted to be a teacher. My grandmother was a teacher, my aunt was a teacher. I would have to say that was my focus through high school. I went to college, I’m a teacher and I’m very passionate about it, very passionate about early childhood education. I currently decided to personally take a step back and decided to work on my Master’s degree.

Tammy: Wonderful.

Jill: Yeah, between doing that and teaching full-time and having two children, let’s say two teenagers at home. [laughs]

Tammy: You’re busy.

Jill: It’s busy. When I have a free second to breath and if I’m not writing the research paper or discussion thread I am spending time with my family and friends. That’s very important to me. I like to exercise, I love to be outside in the summer in my flower garden. That’s kind of me by myself.

Tammy: So you knew early on what you wanted to do?

Jill: I did and I think that doesn’t happen a lot.

Tammy: No.

Jill: I I think a lot of children these days are just full of pressure. “I don’t know what I want to do. I don’t know what I want to do”, and I just tell my boys I hope it’s just a lucky one. So, 20-some years I’ve been in it and I don’t ever see myself do anything else.

Tammy: Oh, that’s wonderful. You love it, that’s great.

Jill: I do, yes.

Tammy: It’s a gift when your passion can become your work.

Jill: Yes, absolutely.

Tammy: Absolutely. I want you to pretend that you’re talking to other parents. What do you want them to know about your experience as raising a child with a mental health condition? What would you want them to know?

Jill: I would say number one, trust your instincts. If you see something maybe that is out of character for your child, maybe something that differs from what they have “typically”, how they’ve been acting. I guess just picking up on those little cues. I look back over the journey with my son it’s been three years. Three years and three years now has gone by and I look back at some of the things and say. “Wow, I wish I would have been– went with my gut more than I did”. Does that make sense?

Tammy: It does. Now with your son, was there a clear before-and-after of an onset of symptoms, did it sort of come on at a certain point in his life or did you always see it his whole life, or?

Jill: No. We did not see it early on in life at all. There was no signs or symptoms at all. Probably started seeing it at the age of 15, his hormones were really coming on. When we first started seeing signs like I said looking back impulsive behaviors and things that typically hadn’t been characteristic of my son, but because some of it we kind of blamed on, “Oh, he’s a teenager. Oh, he’s sowing his oats, he’s doing this”, but then he would be fine for a while. Then well, we’d have another as well, I say now an episode of just uncharacteristically behaviors. I should have went with my gut more than I did but I did try to get some help right away, but that was difficult and that probably will come next.

Tammy: Yeah, tell me about that because let me just go back to one thing.

Jill: Yes, please do.

Tammy: You’re bringing up a really important issue because when you’re dealing with children’s mental health, there’s a whole gamut. Some kids have things from very young like Tourette’s usually comes around to age seven, for instance, but a lot of kids have conditions that surface during the teenage years. That’s when the conditions start to have their first symptoms. As you said it’s hard to know is it just being a teenager or not.

Jill: It completely was because from birth up to that point he had been a straight A student. He had been an austere athlete. He had been the kid that never broke a rule, if there was a line he was going to walk it. That’s why I say trust your instincts because as mothers we know our children better than anyone else in this world. When he was behaving some of these behaviors I’m like, “This is– Okay, I’m not sure. Are we this pushing? Or a teenager–“. Like I said we even went with were there drugs involved because drugs are so rampant in the high schools and things that I was not aware of. I guess maybe naive and I had to open myself up to that and wow, what started were these outbursts, I say outburst because it was the change of behavior. His grades started slipping a little. Socially he started secluding himself from his friends. There would be days maybe even weeks he would just stay at home on the couch and he’d want the curtains closed, and he just wants to watch movies with me. You know, “Okay, well, honey” and his friends would come over and say, “Come on, bud. Let’s go.” Typically before this kind of came on sure he would go. He’d love it, very social kid. Then there’d be times where we get over of laying on the couch. Then we would– he particularly, I remember, got in his car asked could he go to the mall to the nearest city and I said, “Sure, okay”. Called me, got a speeding ticket, was going almost a hundred miles an hour.

Tammy: That’s so dangerous.

Jill: Yes, and this was just a few days after we’d been laying on the couch for a while. Then I got him home and said, “Okay”, had the whole typical teenage speeches, had the whole, “We’re going to take your car”, and then two days later gets another speeding ticket. He was going 95. It was just so mind-blowing because my whole mommy gut, I call that, what’s going, “What is going on”, and so that’s when I’m like, “Okay”. Started in with therapist number one.

Tammy: Talk about that. Why was it hard to get help at first? What was difficult at that time?

Jill: I will be completely honest and people probably don’t want to hear this but I know as a mother I wish somebody would have told me, Iowa is horrible for mental health. I had been born and raised in the state and I will probably live in the state for the rest of my life, but I am highly disappointed with the services and help that we have. From just doing some readings I think we’re one of the worst states in the United States of America.

Tammy: We are. I can feel what you’re saying  – because if I hear what you’re saying  –  this is where I’m at –  me– I don’t want read this in –  but I love Iowa. There’s so many wonderful things about our state but this is so disappointing.

Jill: It is. It’s – it’s heartbreaking.

Tammy: It’s heartbreaking, yeah.

Jill: It’s sad and the first thing I did was say, “Okay, I need a professional” because I am a teacher. I am not a doctor. I just told my son, “Hey, I think we need to talk to somebody to figure out what’s going” because he was talking to me but not really. I think he was not sure, I think, what was even going on with himself. That’s where I was like, “Is this his hormones? Is this puberty has set in?”. He has a later birthday so he is a younger one for his class. I went and got a therapist number one, I say because it’s a long…. So went and he just– it was very difficult. He wouldn’t open up. That’s what we tried first. Then, unfortunately, he attempted suicide.

Tammy: I’m sorry.

Jill: Oh, yeah. It was hard. I can talk about it now because it’s been long enough but I think it was more of a cry for help like I’m stuck in my own body and I’m not sure what’s going on. I came home and he was wanting to sleep, he wasn’t sleeping at night. That was another mommy gut thing where the kid that always slept at night wasn’t sleeping at night. He decided– I saw this package of pills and I’m like– he’s like, “Mom, mom” because just he’s so smart and he’s such a wonderful kid.  And he’s just like, “Mom, I didn’t know what else to do but I took all those Benadryl and I went”. “Excuse me?”. He’s like, “I just can’t do it”. “You can’t do what?”. He’s like, “I can’t not sleep and I can’t, my head is racing. My thoughts are racing”.

Tammy: He’s suffering.

Jill: He’s like, “I just need some rest”. I’m like you know the mother, “Oh, my gosh”. He admitted doing it. We went to the hospital and then they once you go to the hospital with an attempted suicide then, you kind of get a little more help. Unfortunately, we had to go through an episode like that to get a little more help. We moved on to therapist number two which also involved medication. He hadn’t been on any medication until that kind of botched attempted suicide or just attention-getting. I’m not even sure what do we call it now.

Tammy: Clearly he was in deep pain and needed help.

Jill: He did. I think that’s–

Tammy: We take it all so seriously. We need to. Absolutely.

Jill: Yeah, we need to and there was no way, and I wasn’t going to take him to the hospital because his father had said to me, “Well, does he really need to go to a hospital?”. He took several Bendadryl and I think this is a tipping point where he looked at me and said, “I just can’t take it anymore. I need some rest. I need to stop my head from spinning”. I don’t even know because I wish I could– I’m not in his shoes. I didn’t know.

Tammy: How could you?

Jill: How could, how can you?

Tammy: Did the hospitalization was it a relief for him because sometimes it can be really– it can go either way, especially for a teen. It can be such a relief to know there’s a place you can go.

Jill: I think looking back on it because that was three years ago, I think looking back on it, I do think there was some sense of relief but there was also a sense of shame.

Tammy: That’s something we should talk about because that’s something we need to change.

Jill: It is.

Tammy: He’d go to the hospital if he broke his leg, right?

Jill: Yeah.

Tammy: He won’t be ashamed of that.

Jill: Oh, no.

Tammy: Poor kid. He’s ashamed of a health problem that he can’t help.

Jill: Yeah. I think that that was the worst thing is to watch be ashamed and embarrassed. And me was just starting to have my eyes opened. I wasn’t, I had to be strong for him but I had to convey to my 16-year old that this is that we can talk about this. That it’s okay to talk about. They put him in some day treatment. It happened to be during the summer and he went to a hospital in the city is nearest to us during the days for some day treatment. I would drop him off and pick him up. That’s where they wanted to start a medication and he started his first medication. I said first because there’s some things that happened as they change and grow and figuring that out. He responded pretty well to the day treatment. The medication I could say no.

Tammy: It didn’t work, it wasn’t the right one?

Jill: No. That leads into my next thing. Number one was trust your instincts. Number two, be persistent.

Tammy: Yes, because it’s a long journey getting the right med.

Jill: Huge.

Tammy: Something that works for years all of a sudden cannot work, so you’re right. That’s something, a muscle you need to keep throughout your life, right?

Jill: Yes, be persistent.

Tammy: Be persistent.

Jill: There are really so many as we call them, as I say we is– his dad and me – we said there are so many pieces to the puzzle of someone that is suffering from a mental illness. To get the pieces to fit your puzzle to make it look like a nice picture takes time. I remember back when we went to just the scenario, I was explaining when the first time we had the hospital stay and the treatment at the hospital was, be patient, it takes time. You do not want to hear that and I was angry, very angry. No, my son has strep throat I want a medicine that’s going to make him better. No, my son broke his arm I want to cast and in six weeks it’s coming off. My son has a mental illness, I want at least something that can give him some relief.

Tammy: Now.

Jill: Now. Tell me in six weeks it’s going to be better. They can’t.

Tammy: They can’t.

Jill: Nobody can until you try it. Well, we tried this medication and give it six to eight weeks. Whoa. It was causing I would almost say his– my son is recently officially been diagnosed as bipolar, so now we know. It’s been a long few years but I would say the first medication he was on brought on more the manic.

Tammy: Oh, yeah, that can happen too.

Jill: It can and we did not know that but it was more manic and more just random behaviors that were unlike him. Finally, when I say be persistent, I went and I said, “No, we can’t do this. This is not working for my son”. Then we changed to medicine number two, try that six to eight weeks, you have to make sure it works. I’m honestly not even sure. At one point I kept a list of medications that we’ve tried.

Tammy: Keep those lists, those are really important, yeah.

Jill: I do. I have the list and I try to update it as much as possible when they change him. This probably now currently, the stories I was telling you and he was 15 going on 16, my son is now recently turned 19. He’s been on the same medication regimen, main medication regimen for almost a year or a little more of year.

Tammy: It’s working well?

Jill:  It’s working well, he’s responded well.

Tammy: Oh, that’s wonderful.

Jill: We’ve recently had a little bit of a breakdown but we added something that kind of is just so I would say be persistent.

Tammy: Being persistent, that’s really important. One thing just from my own experience that I’ve learned that I didn’t know because I agree with you, it’s impossible as a mom to be patient. You want your kid better now. Sometimes medications that fail, as horrible is that is, that information helps with the diagnosis later. That helps them figure out, “Oh, that’s what’s going on”. That journey is really hard to go through but all that ends up being helpful to figure out what’s going on. It ,ay take a few years but I think it’s helpful when you’re in it to know that. That this may seem like it’s awful right now but this may be giving my child’s psychiatrist great information a year from now that he’ll know what’s going on.

Jill: Document it. This did not work for us.

Tammy: Exactly.

Jill: That’s like I said trust your instincts, go with your gut, be persistent. Those are two main things that now looking back I wish someone would have said to me.

 

Tammy: Yeah, because you have a wisdom as a mom. Our society doesn’t always give us the feedback of how that is so worth, what that’s worth, which is so important. I think that’s great advice.

Jill: Yeah, and I think it’s okay to feel every single emotion in the universe because there were times where you’re just so angry that you can’t control the anger within yourself or at maybe it was directed at someone because you thought they didn’t do enough or you just cry, or why did this happen, or you feel so sad for your child because they’re suffering, not suffering but just they are.

Tammy: They are though.

Jill: I guess it’s suffering it’s– and he’s at that age is, if they can describe it –no- they’re trying. My son, his experience was all of a sudden this hit us at this certain point in life. Well, I’ve never– he never known what this feeling was and so yeah, that’s tricky.

Tammy: You said something I want to follow up on if it’s okay?

Jill: Yeah, absolutely.

Tammy: Because I think it’s another very common experience for us mothers and caregivers that you had to hold your emotions together when your son was going through this. Let’s be honest, we have a whole lot of emotions watching our kids go through this. You’re right, we have to sort of put them on hold. How did you take care of you when that or come back to processing that, and I say this not like because I don’t know how I figure it out either. I don’t know that I’m doing it. I think it’s something we need to talk about as caregivers and as mothers because it’s a very emotional journey we’re on but we don’t often have time to attend to our emotions because we’re literally constantly helping our kid navigate theirs.

Jill: Yeah, and I think it’s important to yourself as a mother. We as mothers stay strong for them because we feel like we are that constant. I feel like I am my son’s strength when he cannot be strong. I have to be strong and not waver and almost like I compare it to an outside of body experience. Okay, I’m going to put me over in the corner for now and this stoic, non-emotional machine that has his mom’s face on it is going to be her. Because right there I’m over in the corner because if I was here I would be a blubbering emotional mm-mm.

Tammy: That’s a great description. I’m sure a lot of our listeners  – I know I can relate to that, that just sounds so familiar to me.

Jill: And to myself. I get back in– my son had the worst, excuse me but, he had a really bad episode at Christmas. One of the many therapists that he had been to which we thought we had gotten a good one, and they’ve been going for about a year, decided that it was okay that maybe he didn’t need to take any medication because we hadn’t had a clear diagnosis. Okay, all right, well, he’d been doing so good and graduated high school, got himself a full-time job, had his own apartment. Then she said, “Let’s just try without”. Of course, my son being a man doesn’t want to have to rely on medication, “Sure, if a doctor tells me I don’t have to, it doesn’t have to”. Long story short, six weeks later manic episode to the full-blown worst episode I have ever seen and he’s 18 years old. I had to pull myself together and I found my own strength that I never thought I had, ever thought I had.

Tammy: You have to be fierce for this job.

Jill: Fierce is a very good word. Fierce, strong, whatever you need to do to get through it. I would say I have learned more about myself. I am 44 years old and I probably know myself better than I have in my entire life.

Tammy: This will do that to you, won’t it?

Jill: It will.

Tammy: It really will.

Jill: And that’s good. It’s okay but I thought I knew myself. I didn’t know myself. I didn’t know the strength that I had as a mother. I think that’s good but how do– I guess going back to your original question, I’m sorry, but how do you how do you take care of yourself? Well, after you get your son settled in the hospital or the care facility or home, wherever they end up being, I went back to the corner and I picked myself up, took my shell off. In the privacy of my own time, in my own place, I felt those emotions. You have to feel them at some point, you can’t bottle them out.

Tammy: They’ll come back to haunt you if you try.

Jill: You will have some major– you need to talk to a professional. You can talk to a relative, a friend. If you are spiritual, talk to your spiritual leader. Do something that you can get those emotions because you’ve got to feel them, you have to feel them.

Tammy: This is where support groups and things like that can also be really useful as well.

Jill: Support groups, absolutely, find someone in your support group because I’m telling you we if as mothers as parents out there, even if you’re not a mother or a father or just a caregiver, you need a go-to person or you need a go-to way to let those emotions go.

Tammy: Yeah,

Jill: Because I know we all as caregivers want to be strong and yes, but you have to remember to deal with your own personal.

Tammy: Absolutely.

Jill: You do.

Tammy: Thank you for that. I think that’s something we need to hear and remember.

Jill: Yeah.

Tammy: So, this is a lot but I’m wondering if you can think back in the past three years about something that has been a barrier to getting help you’ve talked about some of the challenges with finding the right medication and so forth. Has there been something that’s been a barrier or you tried that didn’t work or that you wish would have been different? You wish should be different for people going forward that you experienced?

Jill: I think you all those things you mentioned were barriers. I’m just finding the right fit but I do think I’m going to go back to it a barrier is where I live.

Tammy: Hmm,

Jill:  Not only the state of Iowa that I live in but the county that I live in and my state of Iowa, very limited resources.

Tammy: Hmm,

Jill: We do not have a hospital in the county I live in. So, when I want to– I’ve committed my son twice when I did the committal there wasn’t  a county that had no hospital. So, took him to the county over where the big city is and they kicked me out because they didn’t have to treat my son because he’s not their problem.

Tammy: Really?

Jill: Mm-hmm. because we’re not residents of their county.

Tammy: I don’t realize that they could do that.

Jill: Tell me how, tell me how inhumane that is….

Tammy: Absolutely.

Jill: Inhumane.

Tammy: Absolutely.

Jill: As an educated woman, I consider myself an educated woman. I did not allow that to happen. This last time.

Tammy: Right.

Jill:  I stuck my heels in and said, oh no, my son needs to be treated well. “Well, we have this many people in our county that we don’t have beds for, we don’t have room for.” Wow.

Tammy: That’s shocking because it’s just and that’s something to check on I think. It just doesn’t sound like it could be legal. But we run into these things all the time that seems. like could this happen?

Jill: How could it happen?

Tammy: How could it happen?

Jill: How could it be legal? Exactly. I talked to some of the nurses from this hospital and said I don’t understand it like we have to send him back. We cannot keep him.

Tammy: Mm-hmm.

Jill: So, they gave them some a shot in the leg and said here you go.

Tammy: Yeah,

Jill: Back to your county. What? You have got to be kidding me.

Tammy: So just a lack of resources.

Jill: It’s yes. And I’m going to tell you the story.

Tammy: Yeah,

Jill: It’s very personal as well, but it’s very real in my life when my son went through the episode this Christmas where his doctor took them off his medication and we were in the full-blown manic episode. I could not get my son to get in the car and go to the hospital with me in the nearest town. Could not. He was so far gone mentally that he couldn’t. He still had his automobile, he’s still on his apartment and still had all his freedom. And I was scared for his life. Somehow, some way they found his car abandoned in the middle of the street. And he was knocking on people’s doors at 6:00 in the morning confused. So, they brought him into the police and he was put in jail.

Tammy: Instead of taken to the hospital?

Jill: Uh-hmm, My son was put in jail and charged with public intoxication. So they called me and said, ‘Ma’am we have your son’. We think he’s high on meth.

Tammy: He was manic?

Jill: Yes,

Tammy: That’s what I’m hearing.

[laughter]

Jill: A long pause because there were flames. Those emotions–

Tammy: Right.

Jill: There were flames coming out of my ears and I’m like. “Sir, please any, any drug test you’d like to give him. I’d like for you too because my son is in a full-blown manic episode.” “I just think he needs to sober up, we’ll keep him overnight.”

Tammy: Even after you told them this?

Jill: Yes, even after I told them so. I said alright. Because I honestly want to get my son out and if you’re keeping him right here I’m calling around, I’m going to start trying to find a spot. But why don’t you go ahead, and run a drug test, do whatever you need to do, have him “sober up”? I got a phone call by 8:00 am the next morning.  “Yeah, no, there’s no drugs in his system. He’s not– Yeah. I’m sorry ma’am. He needs some medical attention.” I go “he’s needs some medical attention as soon as possible. Let’s get on it.” Well, that was December 28, my son sat in jail until January 2nd. I had to file papers to get him committed. I had to go to the judge and beg and plead to get him some help.

Tammy: Because they were saying this is criminal activity as opposed to a symptom.

Jill: Thank you. Yes.

Tammy: For an illness that he clearly had?

Jill: Yes and had history. This was just six months ago. He’s had this basically three years and so, I was persistent and did not give up. And I said how, “how is this? how is this okay to keep my son locked up in a jail cell? He’s done no criminal activity.”

Tammy: Right.

Jill: They were like, “we don’t know what to do with him.” They told me, “we don’t know what to do with him. We have nowhere to take him.” That is what’s wrong with mental health.

Tammy: So, in this case, having an access center in your county, having training, CIT training, crisis intervention training among the police. These would have made a huge–

Jill: Huge

Tammy: –difference for your son and for your family. Not to mention for your community who is probably a lot of your neighbors or whoever were frightened.

Jill: Yes.

Tammy: And luckily no one was hurt, it sounds like.

Jill: No, absolutely no.

Tammy: But he could have.

Jill: Oh he could have

Tammy: Got himself into a car accident.

Jill: Yes. And hurt himself or someone else.

Tammy: And hurt himself. So those are just some little examples.

Jill: Mm-hmm.

Tammy: So this is a great example of how resources make such a difference.

Jill: They do. And I was persistant and I stayed strong and said I will do whatever it takes. The judges in my county were amazing. The police officers in my county were amazing gave me their home phone numbers and set–

Tammy: It’s wonderful.

Jill: I had probably the best support in a horrible situation I did, but I was persistent. And I do live in a smaller community, but I still think that those judges didn’t have to do that.

Tammy: Right.

Jill: But I will never ever forget the judge’s comment to me. He said, “Jill, your son does not deserve this treatment. I’m sorry, he has done nothing wrong.”

Tammy: I’m so glad you got to hear that

Jill: And I said, “thank you. You know who needs to hear that?”

Tammy:  Your son.

Jill: “It’s my son.”

Tammy: Did he tell him?

Jill:  Later after he got–

Tammy:  Well enough.

Jill: –well.

Tammy:  To hear…

Jill: He did. He said in the courtroom.

Tammy: I am glad you got ’cause some of these families never get that.

Jill: No, I couldn’t believe it. And I lost it emotionally. My stoic face left as fast as it could.  I just cried then. I was on the phone and I remember. Thank you so much. I said I know he does not but this is the problem. And he goes this this the problem, Jill, because I can’t send him home to you, I don’t think he’s safe. I said he’s not. I think he’d hurt me or his brother no. But he’d wander off.

Tammy: Right

Jill: And physically, I can’t keep– He’s bigger than me.

Tammy: Right.

Jill: You know this and I might– And he said so we’re going to keep him here but we’re going to I’m going to get an emergency order. Order him up there to see an ER doctor.

Tammy:  I’m glad you had that. Because then he got the help.

Jill: Yes.

Tammy: Now he’s doing much better.

Jill: Yes. Thank you. He had to stay on in the hospital in this psychiatric wing at the hospital for ten days. I was very worried he wasn’t going to come around. I went every day, I called every day on my lunch break from work and then I went up every day for a certain– you only get a two-hour time window. I went up every night still wasn’t coming back to me. But he knew who I was.

Tammy: Right

Jill: But we were still having some very delusional thoughts but finally they started him back on the medication that the doctor had taken him off. They, they uped it because obviously, they needed, they wanted to get it in his system faster. Then on the way home one night, his doctor that was treating him at the hospital called me and said, “Yeah I don’t think this by itself is working. Can I add a mood stabilizer?” I go, “sure.” We had tried that another time and it had worked for a while but we took him off focus he gained so much weight.

Tammy: Hmm,

Jill: Because there are so many factors medication and weight and other things that it affects.

Tammy: Right

Jill:  And within 48 hours I have my son back. I went up to visit him and he’s like, “Mom” and just tears of joy. I was so happy to have him back. So then they let him go a day or two later so. He’s healthy.

Tammy: That’s wonderful. So, you’ve actually already answered the next question–

Jill: Okay.

Tammy:  –which is what has worked. But if there’s something else you want to mention.

Jill: Yes…

Tammy: –something that you wanna say this works please keep this.

[laughter]

Jill: Yes.

Tammy: –keep making sure this happens for other people.

Jill: You know I just you know had I had really good luck with some really great people that were compassionate and understanding. And I think also most of the adults that I had interaction with were saddened too at the situation that they felt helpless because they wanted to help me but they couldn’t.

Tammy: Hmm,

Jill: So I think that was something. What else has worked well? Just be you know to be the best advocate for your child. You know our mental health system in the state of Iowa that I live in needs work but be an advocate for your child. You’re the person that knows your child more than anybody else in the world. So say to them you know this is what I’ve seen, this doesn’t work. This is what I need. This is what my child needs. And you know what. Even if your child is old enough, my son is old enough to say hey this makes this is working for me.

Tammy: Yes

Jill: Or this isn’t working for me. Don’t not say what you want to say. This is not something you can just say, “Ok, not a sore throat. Let’s try this and see if it works.” Something much bigger than that. And so yeah, I’m kind of outspoken sometimes

Tammy: That’s a good trait to have when you’re dealing with this. [laughter]

Jill: It is, and you don’t have to be. You don’t have to be outspoken and boisterous kinda like I am, but you need to at least say what you’re feeling. Advocate for what you think. Advocate for what you think your child needs.

Tammy:  Right

Jill: Don’t hold back.

Tammy: Right

Jill: Just don’t, because you don’t want anything to end or end up in a situation that you could have avoided.

Tammy: I think that’s really good advice.

Jill: You know.

Tammy: So, we like to ask these next three questions–

Jill: Yeah

Tammy: –each time. First of all, we recognize that this journey is constantly changing where we’re at. So just at this moment where do you feel? Do you feel like you’re swimming, drowning, or treading water?

Jill: I had to think about this question I have to really think about that but my first response really is were swimming right now. I know I just came off the story of what happened to six months ago.  But honest to goodness, six months later where I’m sitting on this day in the month of June, we are swimming.

Tammy: Good

Jill:  His treatment plan is working. He is following his treatment plan. He is doing what he needs to do. And as of most recently he looked me in the eye and said, “Mom I don’t ever want to feel that way again”. He was old enough maybe to understand. He doesn’t remember the whole episode and they say sometimes you don’t get full memory of it.

Tammy: Right

Jill: And maybe that’s a blessing because some of the things he was saying, that came out of his mouth. Maybe it’s not characteristic of him. Typically, when he is on a basing in level. But I’d say for the most part, we’re swimming, or moving forward he’s doing, like I said ,his treatment plan and he’s also he’s back to work. He’s back to smiling. He’s back to laughing. Me? As for me. It’s not it’s about me but–

Tammy: No, this question is about you.

Jill: [laughter] Yeah true. It is about me. Yeah, Yes. I’m swimming, I’m swimming. I feel good. I feel good. I feel good because I feel that I did everything I could. We got, in the end, it was a hard a hard thing to get even the last six months. I’m not even talking about the last three years of my life but in the last six months, I feel like boom, did it! You know we’re here and I’m able to kind of just and I don’t go to work and I worry about my phone ringing or I don’t go to work and think, oh I hope he gets up. I mean out of bed and gets going. I’m swimming because I know that’s all happening.

Tammy: Yes

Jill:  I’m saying he’s swimming because I see it

Tammy: Don’t you love boring days.

Jill:  I love boring days.

[laughter]

Jill: I love a boring day.

[laughter]

Tammy: They’re the joy of my life.

[laughter]

Jill: Yes.

[laughter]

Tammy: Days you not in panic mode –

Jill: Yes.

Tammy: – are so awesome.

[laughter]

Jill: Those are so awesome and so when they’re there, take them for every minute of that day because yeah.

Tammy: I agree.

Jill:  Because it could change next week.

Tammy: Exactly

Jill: My mantra has been when someone asks me a question like are you treading water, drowning, or swimming. I’m consciously optimistic.

Tammy: Right

Jill:  But we are swimming.

Tammy: Yeah.

Jill: Because in six months something can happen.

Tammy: That’s right.

Jill: But I try to look at it as six months. If my son wasn’t suffering or having this mental health issue there be something that would come up in his life anyway.

Tammy:  Absolutely

Jill:  I have a younger son who is recently turned 16. He has shown no signs or symptoms. But you know a bump in his road is, “Ugh,I did not want to get up to an ACT test”.

[laughter]

Tammy:  Oh, no.

[Inaudible]

Jill: Or having a bad day or his girlfriend broke up with him.

Tammy: Sure.

Jill: So he’s sad. You know, I mean where my other son who’s 19. It could be, “Oh, I haven’t taken my medicine for a week” or all of a sudden becomes depressive and won’t get out the bed. I mean there’s just aaah!

[laughter]

Tammy: But the truth is, life, in general, is unpredictable.

Jill: It is.

Tammy: One positive thing of going through this difficult experience is I think you become flexible to deal with that.

Jill: Totally. You are right.

 

Tammy: Because you have to, right.

Jill: There’s no other option.

Tammy: There is no other option

[laughter]

Jill: No other option. No other option

Tammy: So, what is your self-care routine. Or as I like to say sometimes it might even be a survival technique.

Jill: Yeah

Tammy: Like how do you take care of you.

Jill: Well I think my number 1 thing has been over the last three years my journey with my son and being his caregiver is to talk openly about it.

Tammy: Uh-hmm.

Jill:  Don’t hold it back. I think at first, I kind held a little bit back because I wasn’t sure you know who really to talk to and who wouldn’t be like– I know there are stigmas and there’s judgments and when I gave birth 19 years ago, did I think that my son would end up having a mental illness? No. But it’s what. It’s just life, you know.

Tammy: Uh-hmm.

Jill:  And so, it’s not. You shouldn’t be ashamed of it.

Tammy: That’s Right.

Jill: You shouldn’t feel like someone’s looking at you like what did you do, what kind of parent are you. It’s no. It’s an illness like, you know I have a friend who is diabetic just recently.

Tammy: Right

Jill: So, she has to treat that the rest of her life otherwise she can get really sick and die.

Tammy: Exactly.

Jill: So, I’ve tried to compare that with my son’s illness. He has to treat it and stay on top of his treatment plan. Otherwise, things can happen.

Tammy: That’s right.

Jill: It’s like an illness like– I know for a fact he’s going to live a long and fruitful life and amazing things are going to come his way. And I think he’s starting to believe that.

Tammy: Good.

Jill: And I think that I think I just– I try not to think too far advance, but I think it’s good to be open and talk about it.

Tammy: Absolutely.

Jill: I do. I think that’s important. I just also try to take time for myself. You know just me when I feel like I’m an empty vessel or I’m a last jar and I’m empty. I need to just take some time. Honestly, even if it’s for a couple of hours and just go for a walk by myself.

Tammy: Um-hmm.

Jill: I took up yoga. Just go–

Tammy: That’s great.

Jill: –and do some yoga poses. I’ve been considering meditation because I’ve heard it’s wonderful. Just you, just me being with me. And like I said earlier at this age who knew I didn’t know myself.

Tammy: Um-hmm.

Jill:   And I think self-care, with that you find out who you are.

Tammy: Yeah.

Jill: If really you say, “Wow, I think I’m an okay person.”

Tammy:  It’s like, oh she’s pretty awesome.

Jill: I might hang out with myself, If I–

[laughter]

Tammy: I think I should hang out with her. Exactly. I love that.

Jill:  Yeah,

Tammy: I love that.

 

Jill: Yeah. So

Tammy: So, here’s the last question we end on. I think any mother can give you a laughable moment.

[laughter]

Jill: Yes

Tammy:  So, what is your most laughable moment?

Jill: Oh jeez.

Tammy: What makes you smile when you look back and think oh my goodness.

[laughter]

Jill: I don’t know. And this is hard because– Ok, so laughable moment as in myself and my son’s mental illness and dealing with that . What’s the most laughable moments with that?

Tammy:  It can be. Yeah.

Jill:  Well honestly, it was as of recently. I can laugh now. I think it’s what that’s kind of the question you’re asking me.

Tammy: Sure

Jill:  What’s a moment that you can laugh at now. Well or that’s how I’m reading it.

[laughter]

Tammy:  It’s however you want to interpret the question but just something makes you sort of laugh like oh that was funny. [laughter]

Jill: It was and it was it’s so funny now but– So, when my son was committed to the hospital to get medication back and get him stable and able to function, I would go up every night and you can’t take anything in with you. You know it’s just me and my younger son couldn’t go because he wasn’t old enough and whatever. So it go in and oh my goodness, every day he’d see me, he recognizes me but he would talk about all his brothers and sisters and all these babies that I had.

[laughter]

Jill:  Just things and then the craziest part  – there was a lady that was my age. Very nice. And she would lecture me every night about my skincare because [laughter]  I’m naturally kind of dark complected anyway so, “Do you use a tanning bed. My husband is a dermatologist and she would just over and over…

[laughter]

Jill:  And then she– Jake would put lotion on my skin. And looking back on that one. Well, Ok.

[laughter]

Tammy: Right.

Jill: I have to laugh now but it was because I knew he was there and he was getting the care he needed.

Tammy: Right

Jill:  He was safe,he was clean. He was getting the medication but not all the chemicals in his brain were clearly working correctly yet. [laughter]

Tammy: Right

Jill: “So, mom remember that brother I had name Zach?” and I’m like, “Oh, okay no honey that’s probably…”  Oh, jeez he does– and he I and would just giggle and we would just–. Oh my goodness.

Tammy: Yeah

Jill:  But anyway.

Tammy: Yeah.

Jill: I don’t know. I have to laugh now.

Tammy: That’s right. Sometimes if you don’t laugh you cry.  Sometimes laughter helps a lot.

[laughter]

Jill: Thank you.

[laughter]

Jill: I would say that. At the time I would leave the hospital and I’d be like, “did that really just happen?” And I’m like, “ok, ok. Get it together.” And that’s where I said I wish- when was he going to come back to me like when? And now that he’s back. And we’re all good. I look back on that moment.[laughter] Did that all really happen? I remember him putting lotion in my hands and you know because you will and you will have the moments that are ingrained your head. Whether it’s good, whether it’s bad, ugly, beautiful. There are those moments. I have all of those and that’s one that I’m just like, oh my god that’s–

[laughter]

Jill: Because you know you have to. You have them all in.

Tammy: That’s right.

Jill:  And it’s just an emotional thing.

Tammy: I want to thank you, Jill, for sharing your story with us.

Jill: Oh, absolutely.

Tammy: It really is wonderful to have you share with us. Thank you

Jill: Good, thank you. Thank you just for letting me tell my story and my son’s story because it’s very therapeutic for me as well.

Tammy: Oh, thank you. I’m glad to hear that.

Jill: Yes, thank you.

[music]

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

[end]

 

 

Just Ask Mom, episode 17: “It doesn’t have to be this way”

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

In this episode, we listen to Melissa, a mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and may be triggering for some of our audience. (See below for transcription.)

Suicide Resources:

The National Suicide Prevention Lifeline is 1-800-273-8255

The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals.

Trans Lifeline – Trans Lifeline is a national trans-led organization dedicated to improving the quality of trans lives by responding to the critical needs of our community with direct service, material support, advocacy, and education. Our vision is to fight the epidemic of trans suicide and improve overall life-outcomes of trans people by facilitating justice-oriented, collective community aid.

The Trevor Project – The leading national organization providing crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer & questioning (LGBTQ) young people under 25.

You Matter -This is a safe space for youth to discuss and share stories about mental health and wellness, created and administered by the National Suicide Prevention Lifeline. You Matter blog posts are written by a rotating Blogger Council of individuals between the ages of 13-24 that are passionate about suicide prevention and mental health.

 

Transcription of Just Ask Mom, episode 17

(0:00)

(music fades in)

Woman Speaker: Welcome to the Just Ask Mom podcast where mother share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today, we will listen to Melissa. A mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and maybe triggering to some of our audience.

(music fades out)

Tammy: Hello. Can you tell us a little about yourself before or outside of parenting, what do you love? Who are you?

Melissa: My name is Melissa and I’m a mom here in rural Iowa. I farm with my husband in a small community. I love the environment. I love watching our children grow. Just being outdoors, reading, that kind of thing.

Tammy: You like watching lots of things grow, it sounds like.

Melissa: Yeah.

Tammy: That’s awesome. I want you to pretend that you’re talking to peers of kids that are going through mental health difficulties and their parents. What would you like them to know about your family’s experiences?

Melissa: I would say that our experience as parents with a child with debilitating mental illness – would be to just maybe ask, be inquisitive. Try and find out, not in a nosy type of a way but just– so maybe you can learn a little bit more about the situation and not just shut the doors essentially because it’s very challenging on a daily basis. When you’re feeling the doors slammed by parents or peers that don’t necessarily know the story, it just makes life that much harder.  (2:00) My child has a lot to give to this world. He’s beautiful and he’s kind but he just struggles with certain things. But I think his life as a youth could have been much easier if some closed doors would have remained open.

Tammy: You bring up a really good point because a lot of times, if our children are sick, let’s say if they have a physical illness or the measles or what have you, people would naturally say, “Oh, how is your son doing?” Right?

Melissa: Right.

Tammy: They would naturally ask. Maybe people are afraid to ask us or talk to us. They shut down or shut us out sometimes. Is that right?

Melissa: Yeah. I would say that. I know it is not the exact same thing but I spend a lot of time thinking about it. I kind of wonder if on some level, it’s how people who are diagnosed with AIDS in the 80’s feel.

Tammy: Yeah.

Melissa: So instead of feeling that love and that warmth when they were diagnosed with something. They were judged and I feel that very much in the mental health space here. In a lot of ways, it’s how the kids and the patients are treated. How many cardiac patients or cancer patients do you know that need to go from one doctor to another? And they’re transported in the back of a sheriff’s car in handcuffs.

Tammy: Exactly.

Melissa: That’s how they’re transported.

Tammy: When they’re most vulnerable and in the most pain.

Melissa: Right.

Tammy: Right.

Melissa: They’re actually taking– yeah. They’re handcuffed. I know my son had a really hard time one time because he didn’t even have a seat belt on so that gave him anxiety. The person was driving and on his phone. I think you just feel very out of (4:00) control, anyway; when you have something like this.

Tammy: That’s a really good point. Even when you think about all the years, all the trying to help your child, what has been a barrier to getting the help your child needed? Something that– it’s a barrier or just didn’t work.

Melissa: His situation is very severe. I think some of the barriers that exist are constant therapists that are a good quality. When you’re living in a small space, people come and go. There’s a high burnout rate.

Tammy: So consistency–

Melissa : Consistency

Tammy : — really no consistency.

Melissa: There’s a very little consistency but I would say the same thing even with psychiatrists and getting meds. Because currently, the situation is now he’s an adult, and in the acute care setting you go into the hospital and– he has severe depression. We’ve been in and out of the hospital in an acute care setting maybe thirteen times in the last eight years and in the last six months probably five or six times.

Tammy: Wow.

Melissa: The problem is that continuity of care because you go into an acute care setting and his is suicide; just not wanting to live. You’ll see a whole new team of medical professionals and they’ll have an idea of what’s happening. He’ll go into another space and then they have their own idea and their own med recommendations. Unfortunately, for the patient you’re really not getting the (6:00) highest quality of care. I will say that our experience in the last six months has been even more challenging because he went to a hospital in Central Iowa. When I got there, they had actually prescribed him a medication that he had overdosed with.

Tammy: Already before they prescribed it?

Melissa: Right.

Tammy: Oh.

Melissa: But now that he’s an adult, I’m not given all of the information and so he was discharged with 90 pills that he had already OD’ed on as a youth. Two weeks later, he OD’ed on them and ended up in that same ICU. When I talked to the behavioral health staff, I said, “Did you look at his history?” She said, “We’re not required to do that. That’s not something that we automatically do.”

Tammy: That’s shocking when you think about.

Melissa: Well , And my reply to this person was, “Well, okay. So, if I came in here with a cardiac problem–”

Tammy: Yes.

Melissa: “–or you know some other chronic issue, would you not look at maybe some of my past history; even meds, anything? Just to make a better and more informed choice.” She said, “Well, on this floor, we just don’t do that. It’s not our policy.”

Tammy : Oh–

Melissa : In Iowa, we’re facing a really challenging time getting access to care maybe more so that other states. But — I just looked at the woman and I just said– no things have changed and we are seeing less and less help. I can see the acute care institutions are overwhelmed.

Tammy: Absolutely.

Melissa:  They are completely overwhelmed – but I looked at her and I just said– I think what I’m hearing is now these people don’t have access to chronic care –  which they don’t as an adult. (8:00) Currently the situation is that these people who are the most vulnerable are now going to you for an acute care setting, which is also very limited. We’re not even giving them that quality of care.

Tammy: But then even afterwards there’s no sub-acute to keep them well. They just send them up right back into acute again.

Melissa: Right. Right. Or discharge them and refer them again to outpatient services.

Tammy: You mentioned something that’s really important and you’re at that key point, you could speak to it. You dealt with it when your child was a minor and now he’s no longer a minor and your role shift whether you want it to or not, right?

Melissa: Right.

Tammy: Can you speak a little bit to that? When your child, well this differs too because sometimes it’s even 12 when they say now the kid gets to have more input but —

Melissa : Yeah. Yeah.

Tammy : – at least when you’re the mother of a minor child, you can tell the doctor, “Make sure to remember this. Remember this.” But you don’t get to do that anymore, do you? How does that work?

Melissa: You don’t get to do that. In fact, at this facility that I was just talking about, once this discharge happened. I wanted to talk to the psychiatrist. I said, “Okay. This is the second admittance. This is what’s happened and it doesn’t sound like you have all of the information.” And I’m like, “I would love to– just like a five-minute conversation to make sure that you have the entire picture to give you history.” He wouldn’t even talk to me. When you’re dealing with a young adult, I personally didn’t want to take away all of his choices and make all of those choices for him, but I did feel I could at least make sure that the physician heard the story and had all the pieces to make a more informed decision. Now, moving into adulthood, (10:00) I would say it’s much harder because you’re hoping that your mentally ill child is now providing them with all of that information.

Tammy: But how can they do that when they’re in crisis themselves? It’s an expectation that seem so unfair that the system places on that person.

Melissa: Right. Right. Because of laws and things, common sense doesn’t often times trump some of those things. My kid is smart. He’s been in a PMIC twice. He’s been in an acute care setting at least a dozen times and so he knows what a psychiatrist wants to hear.

Tammy: Right.

Melissa: And he doesn’t always want to be there. He can use those words to just get discharged.

Tammy: Right. For those who don’t know in Iowa a PMIC is a Psychiatric Mental Institution for Children  – because in different states it goes by different names, like  residential long-term care.  – So he knows what would to say, he knows how to play the game.

Melissa: Right.

Tammy: Yeah.

Melissa: Yeah.

Tammy: What has worked in getting help for your child over the years? Is there something that was helpful, that would be good if there’s more of that? Is there something along the way that you thought was positive?

Melissa: I wish I had a lot of positive things to say today, I don’t.

Tammy: Yeah. That’s a reality sometimes.

Melissa: I just don’t.

Tammy: Yeah.

Melissa: I think — I think I’ve actually seen a decline in the quality of care in our state over the last ten years.

Tammy: It’s so discouraging.

Melissa: Yeah.  I think — When we had our first experience with the PMIC, that residential care for youth, the average stay was 10 to 15 months. Because of insurance and privatization of insurance and things like that, his (12:00) second stay was limited to I think six months. Even in month like two or three, they were trying to push your child out the door. A lot of kids could really use a higher quality of care, just a little longer period of time. In my son’s experience,  he was discharged quickly enough that he didn’t have time to test some of the medications, like an anti-psychotic that is pretty severe, and so they did that after discharge, because insurance tried to get him out the door. It just so happened that he had one of the life threatening reactions to the medication

Tammy: How frightening

Melissa: Yeah, he went into a cardiac arrest type of a deal. But that does not have to happen.

Tammy: No it doesn’t.

Melissa: That does not have to happen. He doesn’t have to have the means to commit suicide because they choose not to look at his health history.

Tammy: Right

Melissa: Right.

Tammy: And just to have the safe  place to do those med changes for this kind of severe case is imperative.

Melissa: Yeah,  I mean we are not talking about Tylenol here. These are some really, really serious medications.

Tammy: So we like to ask this because in our experience, in my experience, it changes moment to moment. In this moment, where are you – are you swimming, are your drowning, are you treading water? How are you feeling in this particular moment?

Melissa: I love that this is a question on here because I often times refer to this as like you are drowning. You know not all of the times you get to breath, but that is really kind of what it’s like. People are saying why (14:00) are you not advocating a little more, why aren’t you taking more time to do this or time to do that, and most people don’t know what is going on behind the scenes.

Tammy: Right, that it takes all that strength just to get that gasp of air before you go under again.

Melissa: Right, yeah, I can barely get up, put on my clothes, and I have two other younger children that I am trying to get out the door and smile for – just, you know – yay – it looks like Pollyanna – but I think that is a really good way of looking at it. There are a lot of parents out there – and this is really, really challenging –  and when we look at Public Schools, there are  a lot of things that could very easily be changed to help parents that feel this way. Yeah, that is why I would really like this episode to go out to all of you who do not have children with mental health issues to just give it a second thought on how it might feel to be in our shoes.

Tammy: Exactly. So what do you do to take care of you? What is your self-care routine? Because what I am hearing is  – and I can relate too – is that that it takes everything just to keep everything running, just to keep going. Is there something you can do to take care of you, or, and it may be more appropriate what is your survival technique – how do you keep breathing (laughter) because that is a big accomplishment?

Melissa: Yes it is! It totally is. We have dance parties some nights – we crank up the music – that’s exciting – with our younger kids. I like being outside, we do things like that. But the reality (16:00) of the situation is that there is not a lot of time for self-care, which I know that is the worst answer of all

Tammy: But it is a real one.

Melissa: Yeah.

Tammy: Yeah. As hard as all of this is, I bet there is at least one funny story that you have that makes you laugh a little bit. It is hard to think of one, but is there something that makes you smile when you think about “oh my gosh that was ridiculous!” – even if it is not funny but it is so ridiculous that it is s so surreal  – like “yes that happened”?

Melissa: Tammy, I am in such a bad place, I cannot think of anything funny.

Tammy: That’s ok. You don’t have to.

Melissa: Huh.

Tammy: If you can’t that’s ok too, because I think we need to hear that. We need to hear that it is not always ok – because when we are in that place – I know it’s hard  for me to turn on the radio or the TV and only hear stories about “Oh, they overcame this problem and it’s so great and they’re doing this” and that is all you hear. So when we are in that low spot, it feels like we are not allowed to be there. But so many of us are there, so often and we just keep it quiet. It is ok if you don’t have something to laugh at right now, that’s ok too.

Melissa: yeah

Tammy:  I don’t think you are going to be the only at this moment who is like, “I can’t think of anything.”

Melissa: Yeah, I don’t know. The last few weeks have been incredibly challenging for our family. If we had this interview a month and a half ago, maybe I could find something wonderful. But, the mental health crisis in this particular state – it’s bad. Like I said, in six months he has been admitted to an acute setting six times. (18:00) This last time was because he took one of our vehicles Facebook Live to suicide attempt by trying to go off the road, and had he not unbuckled his seat belt, he would have died. We did a committal and advocated for him to be in this acute care setting longer. They discharged him with another out-patient referral after six days – which has been what has happened for the last six months. That is a lot and it is very heavy. So I am not feeling overly hopeful.

Tammy: What gets me when I hear this story and so many others like it –  no matter what this would be horrendous to live through – but it just seems to make it so much worse when we know it doesn’t have to be this way in terms of help. There is a way to help this, to help people stay safe when they are in this place. No we don’t have a cure for severe depression that we can just wave a wand and make it go away, but we could as a society keep people safe and loved, and families loved and supported – instead of stigmatized – we could do that

Melissa: We could that.

Tammy: We could as a community put our arms around people going through this and hold them up

Melissa: Right

Tammy: I think that is what makes this more painful. Is it doesn’t have to be this way.

Melissa: It does not have to be this hard. No.

Tammy: It would be hard no matter what, but it doesn’t have to be this lonely, it does not have to be this much of a struggle (20:00) to just get people to listen.

Melissa: Right.

Tammy: I want to thank you for your courage for speaking today so people can listen and can hear about what it is really like, because I think we don’t’s say it publicly enough so people can hear. Because it is awful, but it doesn’t have to be this way.

Melissa: No, it does not. No. My only happiness would be, I guess if I can find a laughable moment, is if you can find a group of moms and get together once a month and tell your stories to each other because I think you need that – and you will come up with some doozies. That has been helpful.

Tammy: Support is so important. Just to have someone to be there with you, that, I think,  is so important.

Melissa: It is, but I have even seen in our small community where I know a couple of moms facing things similar to me and they don’t have anybody. Like you said we just need to put our arms around each other and it can get better.

Tammy: Thank you for being here today. I really appreciate you sharing your story with us. I really wish you and your child and your family all the warm, healthy wishes to make it through this difficult time so we can laugh together next time.

Melissa: We will laugh. Thank you.

Tammy: Thank you so much.

(music fades in)

Women Speaker: You have been listening to “Just Ask Mom”, copyrighted in 2018 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 MothersOnTheFrontline.com or subscribe to “Mothers on the Frontline” on Itunes, Adroid, Google Play, or (22:00) Stitcher.

(music fades out)

[End]

 

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

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

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

Transcription

[Music plays]

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

Dionne: I want to say thank you very much–

Shanta Hayes: Thank you for having me.

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

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

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

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

Dionne: This is the self-care advocacy.

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

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

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

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

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

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

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

Dionne: That’s important.

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

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

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

Dionne: Exactly.

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

Dionne: Yeah, that’s so true.

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

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

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

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

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

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

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

Dionne: Tell me more about floating.

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

Dionne: And my son is not.

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

Dionne: That’s a good point.

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

[Laughter]

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

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

Shanta: That was like [makes a sound].

Dionne: [Laughs]

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

Dionne: I like it. I love aromatherapy.

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

Dionne: Yes.

Shanta: [Laughs]

Dionne: On top of it you smell nice.

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

Dionne: I want to come to your house.

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

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

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

[Laughter]

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

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

Shanta: Thank you.

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

Shanta: Thank you.

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

[end]

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.

 

 

[end]

 

 

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

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

 

Transcription

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

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

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

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

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

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

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

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

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

Tammy: Oh, my goodness.

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

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

Grandmother: You need to know the words.

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

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

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

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

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

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

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

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

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

Grandmother: Yes, yes.

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

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

[laughter]

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

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

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

Grandmother: Okay. Thank you.

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

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