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

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

Mentioned on this episode:

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

Transcription

[music in background]

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

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

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

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

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

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

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

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

Diana: Every day.

[laughter]

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

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

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

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

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

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

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

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

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

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

Diana: Yes.

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

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

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

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

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

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

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

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

Tammy: That’s not easy in this situation.

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

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

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

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

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

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

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

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

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

Diana: Right.

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

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

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

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

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

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

Tammy: Wonderful.

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

Tammy: That’s great.

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

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

Diana: Yeah.

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

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

Tammy: Absolutely.

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

Tammy: Sounds like she’s awesome?

Diana: She is.

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

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

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

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

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

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

Tammy: You’re not alone there.

[laughter]

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

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

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

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

Diana: But you can feel very much like that.

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

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

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

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

Diana: Yes,

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

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

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

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

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

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

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

Diana: And that’s dangerous.

Tammy: It’s very dangerous.

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

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

Diana: Thank you.

[music background]

Tammy:  You have been listening to the Just Ask Mom series, part of the mothers on the frontline podcast. Copyrighted in 2018. Today’s podcast host was Tammy Nyden. The music is “Olde English” written, performed and recorded by Flame Emoji. For more podcasts in this and other series relating to children’s mental health go to mothersonthefrontline.com or subscribe to Mothers On The Frontline on iTunes, Android, Google Play, Stitcher or Spotify. Mothers On The Frontline is a non-profit 501(c)(3) organization that uses storytelling for caregiver healing and children’s mental health advocacy. We strive to reduce stigma, educate the public and influence positive policy change through our podcast series and storytelling workshops. We are currently working with Grinnell College to document and archive stories of lived experience with a school the Prison Pipeline, an issue importantly connected to children’s mental health and well-being. If you would like to support our work please visit our website and make a tax-deductible donation at mothersonthefrontline.com.

[music]

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

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

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]

 

 

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

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

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

Transcription

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

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

Miss Diva: You’re welcome.

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

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

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

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

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

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

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

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

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

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

Dionne: Yes he is.

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

Dionne: Alright, that’s a beautiful analogy.

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

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

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

Dionne: He heard you.

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

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

Diva: And it’s like it’s still there.

Dionne: Yeah!

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

Dionne: Yeah

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

Dionne: That’s great.

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

Dionne: I see.

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

Dionne: Right.

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

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

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

Dionne: Go on.

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

Dionne: Good.

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

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

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

Dionne: Okay.

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

Dionne: Okay.

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

Dionne: Yes, I see it.

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

Dionne: Good.

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

Dionne: Yeah.

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

Dionne: That would be true.

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

Dionne: How does he do that?

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

Dionne: Yeah.

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

Dionne: I see.

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

Dionne: Like?

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

Dionne: I see.

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

Dionne: Yeah.

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

Dionne: Right.

Diva: But it’s still a lie.

Dionne: But in terms of their diagnosis and treatment?

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

Dionne: Right.

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

Dionne: Right.

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

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

Diva: Thank you.

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

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

Dionne: Good.

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

Dionne: Right.

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

Dionne: Oh.

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

Dionne: That is wonderful!

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

Dionne: That’s good.

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

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

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

Dionne: Wow.

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

Dionne: Wow.

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

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

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

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

Dionne: Oh, wow.

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

Dionne: Exactly.

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

Dionne: Right.

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

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

Dionne: Right

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

Dionne: Good.

Diva: As you see my nails there.

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

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

Dionne: They are gorgeous.

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

Dionne: yes. Awareness.

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

[laughter]

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

[laughter]

Dionne: But it stands out.

Diva: Yes!

Dionne: My son calls that his expression finger.

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

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

Diva: Oh. Umm..

Dionne: Not for your kids, but for you.

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

Dionne: You are very young-looking.

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

Dionne: That’s cause your youthful.

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

Dionne: I see.

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

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

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

Dionne: I see.

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

Dionne: Right.

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

[laughter]

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

Dionne: Right.

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

[laughter]

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

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

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

Dionne: Thank you very, very much Miss Diva!

Diva: You’re so welcome!

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

Diva: Thank you.

Dionne: Thank you.

[music]

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

 

 

 

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

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

Transcription

[music]

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

[music]

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

[music]

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

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

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

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

Tammy: Oh, gosh!

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

Tammy: That’s great though.

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

 

Tammy:

 

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

Tammy: [laughs]

 

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

 

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

 

Fidelia: The what? My lived experiences?

 

Tammy: To be able to share that with others.

 

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

 

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

 

Fidelia: Mm-hmm. Yes.

 

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

 

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

 

[laughter]

 

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

 

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

 

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

 

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

 

Fedilia: Because I’m good at it.

 

Tammy: [chuckles]

 

Fedilia: I’m good at it.

 

Tammy: I can tell. [laughs]

 

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

 

Tammy: [chuckles]

 

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

 

Tammy: That’s right.

 

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

 

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

 

Fedilia: Thank you for your time and your consideration.

 

Tammy: Thank you.

 

[music]

 

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

 

[end]

 

Asperger’s, Bullying, and Unsolicited Advice, Just Ask Mom Podcast Series, episode 9

In this episode, a mother shares her experience of the recent diagnosis of her son with Asperger’s Syndrome. She discusses the journey to the diagnosis and how well-meaning, but often misguided advice from family and friends can make this already difficult journey all the more painful. She discusses her son’s experiences being bullied in school and the pain of watching your child grow up without friends.

Transcription

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 speak with a mother whose son was recently diagnosed with Aspergers.

Tammy: Tell us something about yourself.

Mother: That makes it really tough.

Tammy: I know.

Mother: Right? You think it’s all easy and then you are like…. I’m a middle age woman that is a mother of a single child. We’re on the path for a diagnosis of Asperger’s. This was a recent diagnosis, or process of a diagnosis, for us. It was a bit of a shocker. Prior to having my son, I nannied for 17 years, so I was around kids, help raise kids, manage kids. My son came along. Everything seemed fine, until now, when we really started to notice some differences and the fact that he is very routine-oriented. And just some of the changes that we’ve seen compared to the other kids. But this is tough.

Tammy: It’s tough.

Mother: Man.

Tammy: It is.

Mother: My favorite thing to do – technology. It is always something with a cell phone or the computer – a gadget of some sort. So, that is what I spend a lot of time doing, that and taking pictures.

Tammy: So that’s what you enjoy doing.

Mother: My son lives in front of the camera. Poor kid. I love him to death but.. he’s like, “Hey, you got that on my face again?”.

Tammy: It’s nice to share a passion, right?

Mother: It is.

Tammy: So that part is really good. So, you are going through this with your son. I want to know what you would like other family members to know. Who you know, because we have a lot of people out there who are going through this and they probably feel the same way. What, you are the one in the middle of it, what do you want family members who they mean very well but don’t- aren’t in the middle of it. What do you want them to know? What would you want to say to them?

Mother: So, let’s go back probably about seven months ago, when we hit a rough spot with our son, who had a day where he was so overwhelmed that he couldn’t function at all. And at that point I knew we needed to do something. We needed to figure out what was causing all the behavior and triggering this because he literally was just a body. His eyes were glassed over. He just would sit and cry. He couldn’t get dressed. The thought of going to school made him physically sick. This is a kid who up until this point loved school.

Tammy: Really?

Mother: That’s when I intervened and said, “Okay, you know, we got to do something”. After talking with family members– they were giving great suggestions, you know, trying to help —but we knew we weren’t on the right path. So we intervened with a therapist who has worked really hard with our son. With a suggestion of a friend I looked at what we felt potentially was Asperger’s and looking at our son knew that he had a lot of the same characteristics. A lot of the same things – looking back of course as a parent you feel really guilty. Because you didn’t see these things sooner but getting that groundwork work with that therapist helped me immensely sit down with my parents, with my in-laws, with my husband, with my siblings, and talk to them about what we’ve seen, what we see going forward, how we are going to try to approach things for him. Because it’s not easy. It’s very stressful. His stress is also my stress. And when he is worked up, then I can’t relax and it just throws the whole family dynamic off. Of course we got the “it’s because he is an only child? It’s because you are too hard on him. maybe if you did more with him. If you took him out and have him do more things he would be more social. That’s part of it. You are not exposing him to enough, you know? Are you sure that he’s on schedule that tight? Have you, you know, really sat back and watched?” Most definitely. The kid gets up in the morning. He has his specific clothes in mind before he gets out of bed. We lay there and talk for five minutes. He gets up. He gets dressed in a specific order. I have tried to change that up. It turns the world upside down. I’m just thinking, “Ok, so much as putting your socks on before your pants can’t be done”. But if in your mind that’s what you need, I’m fine with that. I’m okay. But until I tested that a couple of times, did I find out, right? I just thought, “Oh, it’s just him being particular about one thing”. But we have a certain routine with getting dressed. A certain way to put deodorant on. A certain way to put cologne on. We have to hit the bathroom at a certain time. We don’t do our hair, we make our hair.

Tammy: Really?

Mother: Yes, he makes his hair every morning. So, whatever style he has in his head, he makes it.

Tammy: I see.

Mother: I don’t understand where that comes from, but that’s ok. It’s not worth an argument over come at the end of the day. He eats the same food for breakfast every day until he is tired of it. He eats the same for lunch every day until he is tired of it. So, it’s very, very specific. We have to live this with him every day.

Tammy: Does he get very anxious if anything goes off his schedule?

Mother: Yes. It causes major issues. And he’ll start to fidget. Mostly he’ll either pick at his fingers or hands to try to calm himself. Compression shirts have made a huge difference for him.

Tammy: Wonderful.

Mother: Convincing him to wear them on the other hand was not easy. It took a lot of work but we’re there. It’s a safety blanket now so we don’t leave home without them.

Tammy:

Mother: I’ve invested in. I don’t know how many shirts we have in every color because for him his shirt has to match his pants. And his shirt and his socks have to match or we have an awful day. You cannot use black or blue as universal color. It is specific. It has too match. So it’s very, very tough. I never thought about this. We can do a whole series on shopping with an autistic child – it has to be a certain fabric, a certain color…

Mother: They have to fit a certain way.

Tammy: If you do it then that it’s going to help the child be well throughout the day.

Mother: Yes. It makes a huge difference. And for someone who doesn’t see this, for someone that’s not behind those closed doors on a daily basis, they can throw all kinds of great ideas out there to help you, but until they are in your shoes, they are not going to get the full picture. I would like to have more family members there to see how our days go. To give them more insight because until your hands on, you don’t get it. You see him as this spoiled child who’s throwing that temper tantrum because something, you know, to us seems so small that didn’t go right. But to them it’s significant. It’s hard for them to process it. And the lengthy talks that we have incorporated into everything that doesn’t go right to turn it into a lesson, and explain why things are going the way they are and try to help, navigate through so that they get it. It’s not easy finding the correct language to use so that you don’t frustrate them that much more. It causes a lot of stress on mom.

Tammy: Absolutely. Absolutely.

Mother: Because it’s a lot of trial and error, and with family you get stuck in the middle of that because you’re trying to do what’s best for your child. But yet, you are trying to get them to understand and you don’t want to offend anyone by not doing what they have suggested. But if you go back at them with any sort of evidence then they are upset. Even though they’re meaning well and trying to help, they are mad because you didn’t try it. And it’s just- you feel like you’re stuck in the middle of a cyclone. Because everything around you it’s just spinning so fast.

Tammy: But everyone else gets to conveniently leave the cyclone except for you and your son, right?

Mother: For sure. You’re exactly right. And it’s so crazy because when it comes down to it the more schedule oriented we are, the most smoothly things go, and the better days that he has. But if we are off task, it’s hard to get back on. I didn’t realize how hard that could be until I started reading and understanding what we are dealing with. And now it’s like a light bulb moment and to me it’s becoming second nature. When we took a trip over the weekend, to not come home is significant for him. He has his bed, a certain routine. We don’t mess with that very often. But when we do, we know it’s going to be bad. And so we talk about it for days. I have family that would say, “You’re treating him like a two-year old”. “You are talking about this way too much”. And I’ll say, “But we need to talk about it so that our trip goes better”. If I don’t, his behavior is going to be horrible. And I get the push back. “He’s 11, he knows better”. Theoretically, yes. But with what we are working on, it doesn’t click. It’s ok. We talk about it, we’ve got it all figured out. Just don’t mess with his routine and it will be ok. Once we get there, it’s fine. And he’ll have fun. But we have to work through that on a daily basis. We talk about his school schedule on the way to school every day because he has a couple of classes that change. It’s ok. If we don’t, he gets confused.

Tammy: So it’s very important for him to know what to expect. But if that’s expectation is disrupted, it’s very anxiety participating for him.

Mother: Oh, for sure, it’s definite. And it can through the entire day into depression. And come evening, after we do supper, and we shower, and we take our night time pills, and it’s time to brush the teeth and head to bed, don’t take mom out of the equation. If mom is not there to tuck him in, he will stay up until who knows when. It is horrible. I want to be home because I know if I’m not then he is not going to bed until I get there. I can even text. I can call and tell him goodnight, and he is still staying awake.

Tammy: That’s a lot of pressure because I think as a mom you expect that the first few years of life, right?

Mother: Yes. Yeah, you’re exactly right. You know, being a nanny. Not that I was there a lot for those kids –  I was on call 24 x 7, 365 because the family that I worked for had commitments that would pull them out at all hours of the day and night. I would go in early in the morning. I would be there late at night. I could put those kids to bed, right? Wasn’t a big deal. Or you can be like, “Ok, it’s 8:30 it’s time to go to bed”, and they go. Not with him. Oh no, you will be there, you will tuck me in. We talk about our day and then I’m going to sleep. Until then, it’s off the table. He will find any excuse possible to be up. And it’s so hard because then you’re confined to being home all the time or being with him all the time, in which case you never get a break.

Tammy: Right. And that backs up on us as moms?

Mother: Yeah.

Tammy: That affects our mental well being.

Mother: For sure.

Tammy: Because we need a break, right?

Mother: You need that break. You need that time away. Yeah you go to work in most cases.  Mom takes the kids to school and then she goes and that’s her eight hours or whatever of work. But you come home and there they are and they want to see you, and you want to see them. And so, that cycle continues. You don’t get that downtime, the time to process that you really need to so that you can stay healthy. Because it’s tough. The stress level. And of course, you start to adapt to it. But once you do, there’s a new challenge that comes your way. And then you are like, “Ok, how am I going to face this? How do we approach this?” You learn who you can lean on.

Tammy: Yeah, that’s true. You do know who your friends are, don’t you?

Mother: Yes, and you find out really quickly. Because you’ve got those friends that regardless of what you just find out, call you and say “Hey, how’s your day?”. You’ve got some family that do but really they are prying for information. They really don’t care – because they just want to know what the latest scoop is and what you find out, right?

Tammy: I see.

Mother: But I’ve got a really great friend who no matter what willl call and say “Hey, you know. I know you guys have supper schedule in 30 minutes, can we go for a quick walk?

Tammy: That’s wonderful. So you have a support system.

Mother: I do, but I’m learning that sometimes what’s convenient for her, it’s not convenient for me. And so, having to work on that because if I say, “Oh well, yes, supper is not for other 30 minutes”, “I’m leaving”. I’m sunk because now he’s home – which he’s fine being unattended for a day. I check in on him all the time. But I’ve walked in, I’ve talked to him. We’ve discussed few things. Maybe worked on homework. And now, I’m leaving. It does not go well. If I come home and I say, “Hey, I’m leaving in 30 minutes. Let’s get this, this and this done”. And then I’m going to go for a walk and I’ll be back. It’s ok.

Tammy: Because it’s all part of the plan.

Mother: Yes.

Tammy: So, spontaneity it’s sort of off the table.

Mother: Completely off the table. Whether it’s at any giving point, whether it’s changing– the beginning of the school year is always awful because the unknown in the schedule. The school year changing buildings was horrible. It took over a month to get squared away. And that was before the diagnosis, so we were clueless. And of course, I was extremely frustrated because I’m like, “Oh my goodness, man. It’s not that hard”. And now I’m like, “Oh, yeah it was”.

Tammy: It was that hard, yeah.

Mother: Because he’d smile, he’d go to school, he wouldn’t complain and now I’m thinking, “What was in his head? How is he getting through all this?” Because if that were me, I’d have been blown away. I would have been crawled up in a corner somewhere thinking, “I can’t do this”. And at his age, he went through it- I mean, yes, his behavior was a little rough. But all things considered, I was shocked.

Tammy: I think that’s something we don’t talk about enough is how incredible strong our kids are. They are managing and coping with so many things that other people can’t even see, including us, that are invisible to us.

Mother: Yes.

Tammy: And they are getting through it, and they are not getting kudos for that, right?

Mother: And that’s what I talked to a teacher about. You know, when we’ve talked about things- and kids in general-  when they are doing well, they need to know they are doing well. It’s not just that bad behavior. It can’t just be that because when they start to predict that they are that bad kid. And that their bad behavior  – no one wants to be around them. And nobody wants that.

Tammy: No, no.

Mother: You know, we’ve talked to our son about it– he has no friends.

Tammy: That’s one of the hardest parts, isn’t it? Just saying that, yeah, that’s very hard.

Mother: So in the meetings with the teachers, in the meeting with the family, I’m like, “Can you guys name who he hangs out with?”  They are usually like, “No, I guess we never paid attention.”  My family is like, “Well, I guess we’ve not really noticed that.”  Come birthday parties —  he doesn’t get invited. You know, come time for his birthday party, nobody shows up. Which…

Tammy: …it’s heartbreaking.

Mother: It is. And when it comes down to it, he doesn’t have that buddy that he wants have over on the weekend or someone who will hang out with and play video games or any of that. To see that and to talk to him about that is tough because he doesn’t see that other kids have this going on. In his mind, he’ll tell you he is friends with everyone because he’ll speak to everyone and everyone speaks to him. The response he gets may not be a friendly response, but in his mind, “Hey, they talk to me”.

Tammy: Does that worry you in terms of him being teased or bullied?

Mother: Yes, because it’s happened already.

Tammy: So, he thinks someone is being his friend but they are actually not treating him well?

Mother: Yes. Perfect example of that it would have been late fall. He was riding the bus. And he could tell the name of this other student that he walked to a corner with and the student went one way and he went another to come home. And it was just like casual talk about this person who were there. But then at one point I tried- I texted him, to see what was taking him so long to get home because I’ve got the alerts that it go off when he gets within so many feet of the house so that I know he’s home. So for my peace of mind I can rest a bit. You know? And he wasn’t getting home on time. And so, I texted his phone and I said, “Hey, can you tell me why you are running late?” And I got a really weird response back. Not a normal response from my child. So, I picked up the phone and I called. And someone answered it but there was no hello really quickly on the other end of the phone. And once he got on the phone I said, “What is going on?” And he’s like, Oh, well, so-and-so had my phone. And I said, “We’ll discuss this when you get home, but I’m going to keep talking to you until you walk the other way, and I know that you are home. And when I get home, we’ll talk”. When I got home that night, we talked about it. He said “when I got my phone out of my bag pack like I always do every day and I unlocked it and she reached over and took it from me.” And he is like, “Mom, I don’t understand why you are mad. She was just joking”. [I said] “No, that’s not a joking behavior”. I said, “What were you told at school?”. “Oh, yeah, we’re not supposed to touch other people’s property”. And I said, “Is your phone your property?”. “Yeah”. I said, “See? That is not acceptable behavior. What else has she done to you?” Feel free to tell me. I need to know these things so that we can take care of you. Of course she was shoving and picking on him. I said, “Can you explain to me how or why you think that she is your friend? He said, “But we talk”. “No buddy, that doesn’t make anyone your friend. A friend is going to stick up for you. A friend is going to be there when you are having a bad day to cheer you up. Shoving someone around, calling you names, taking your phone, that is not acceptable behavior”. But we are also talking about a child who got kicked in the groin in the kindergarten and has permanent damage from it.

Tammy: Oh, poor guy.

Mother: When that happened, we weren’t told.

Tammy: Really?

Mother: Not at all. We brought him home. I brought him from home school that day. Nothing was said. There was nothing in the bag pack. No phone call, no email. I went to put him in the tub that night and his whole groin area was black and blue.

Tammy: Oh, the poor guy.

Mother: So, of course, that result in mom being, “what happened to you?” And by the way, dad needs to come check you out because that’s totally awkward for mom to do it.

Tammy: Was he able to explain what happened?

Mother: He told me that another child was holding the door open when they were walking in from recess and the other child decided to kick him.

Tammy: But he didn’t think to tell anyone?

Mother: He told the teacher who said, “You’ll be ok”, and told the other student to settle down. He wasn’t sent to the office and I said, “I understand you all can’t check his groin. I get that. But a phone call so that I could have come to check him out.

Tammy: Make sure he is ok.

Mother: Or the offer of an ice pack would have been nice, but instead we find it at 8 o’clock at night when we are putting him to bed.

Mother: He went to the doctor the next day. He has a testicle that’s lodged up inside from this.

Tammy: How old was he at the time?

Mother: Six.

Tammy: Oh goodness.

Mother: To make matters worse, for three months twice a day I had to try to manually move that.

Tammy: Oh, poor kid.

Mother: How awkward for him and I both, right?

Tammy: Oh, absolutely.

Mother: When the other child- they called that child’s parents. It was, “Well, I know that sounds bad but, he’s like, what did he do to deserve it?”. That’s what was said back to us. So he’d had issues and again. He thought that kid was his friend. I was just thinking, “Buddy, you deserve so much better than this”. You’re such a good kid.

Tammy: That’s hard. So, we ask everybody at this moment, right now, do you feel like you’re swimming, draining water, drowning, what do you feel like you are at?

Mother: Treading water. We’re- we’re getting there. Two weeks ago I would say we were sinking immensely. Um, we’ve come a little bit- we’re getting a little ground. So I can ease up a bit but as summer’s coming, I’ll be drowning here soon.

Tammy: Yeah. Summer is tough.

Mother: It is. And trying to figure it all out for them.

Tammy: What do you do then? Like, what’s your self-care routine or if more relevant, what do you to survive those tough times?

Mother: I turn a lot to my camera. Whether it’s loading up my son and we go to a sporting event and I know it’s something that he will want to watch, and I’ll take pictures. And then I can go home and be on the computer and edit those. Just kind of not really completely shut everything out but be in that bubble. And just focus on the task at hand and not have to worry quite as much. It helps immensely.

Tammy: That sounds great. So, through all of this, what do you think has been your most laughable moment?

Mother: I know this sounds really bad, but watching my son talk to his therapist and get a full idea on his diagnosis, because he himself grasps it now. And he laughs at what we see and so we can laugh with him over it. Because it was so stressful to even get him to go to the therapist. And now he’s comfortable there. He knows that what we are working on it’s not a life-threatening thing. And he can joke with us about things like that now which eases family tensions so much. I know that’s a tough thing to really have us a laughable moment. But come the end of the day it’s made things so much easier for all of us that he’s taking us with this with a grain of salt. He laughs, he jokes, and he understands what’s going on. Taking him to the doctor was another good one. The poor kid had four shots.I laugh as I’m holding him.

Tammy: Right. Every mom, every dad can relate to this. No one likes their shots.

Mother: No. And we’re- we’re strategizing right? Like, “Okay, don’t look. Look at mom. Mom is across the table. Don’t watch the nurse”. You know? And he’s screaming at the top of his lungs. We’re thinking, “Come on, it’s okay. You’ve got four of them, it won’t take long”. And he watched the first shot and he’s like, “Wow, what’s the big deal here?”. He’s like, “That didn’t hurt”. We could let go. And he laid there.

Tammy: And it was nothing.

Mother: No, it was nothing. He is like, “No big deal”.

Tammy: That’s great, that’s great.

Mother: So, he provides a lot of laughable moments for us.

Tammy: Yeah. Well, that’s awesome. Well, thank you so much for sharing your story with us.

Mother: Well, 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.