In this episode, a foster and adoptive parent shares her experience of caring for her biological, adoptive and foster children.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
Jill: You do.
Tammy: Thank you for that. I think that’s something we need to hear and remember.
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.
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.
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.
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….
Jill: As an educated woman, I consider myself an educated woman. I did not allow that to happen. This last time.
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.
Jill: So, they gave them some a shot in the leg and said here you go.
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.
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?
Tammy: That’s what I’m hearing.
Jill: A long pause because there were flames. Those emotions–
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.”
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–
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.
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.
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.
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.
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.
Jill: And physically, I can’t keep– He’s bigger than me.
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.
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.
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.
Jill: Because there are so many factors medication and weight and other things that it affects.
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–
Tammy: –which is what has worked. But if there’s something else you want to mention.
Tammy: –something that you wanna say this works please keep this.
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.
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.
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.
Jill: Don’t hold back.
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–
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.
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.
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.
Jill: I’m saying he’s swimming because I see it
Tammy: Don’t you love boring days.
Jill: I love boring days.
Jill: I love a boring day.
Tammy: They’re the joy of my life.
Tammy: Days you not in panic mode –
Tammy: – are so awesome.
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.
Jill: My mantra has been when someone asks me a question like are you treading water, drowning, or swimming. I’m consciously optimistic.
Jill: But we are swimming.
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.
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”.
Tammy: Oh, no.
Jill: Or having a bad day or his girlfriend broke up with him.
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!
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
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.
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.
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.
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.
Jill: So, she has to treat that the rest of her life otherwise she can get really sick and die.
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.
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.
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.
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.
Jill: And I think self-care, with that you find out who you are.
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–
Tammy: I think I should hang out with her. Exactly. I love that.
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.
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.
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.
Jill: What’s a moment that you can laugh at now. Well or that’s how I’m reading it.
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.
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…
Jill: And then she– Jake would put lotion on my skin. And looking back on that one. Well, Ok.
Jill: I have to laugh now but it was because I knew he was there and he was getting the care he needed.
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]
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.
Jill: But anyway.
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.
Jill: Thank you.
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–
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.
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.
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.)
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
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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.
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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.
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?
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.
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.
Melissa: That’s how they’re transported.
Tammy: When they’re most vulnerable and in the most pain.
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.
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: 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–”
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.
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?
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.
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.
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.
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: 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.
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.
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.
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
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.
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.
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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.
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