Kate, A Mother From Iowa

Dirt road in Iowa going off into distance wtth green grasses and trees.

Kate is a mother from Iowa whose children have autism, anxiety, ADHD, sensory processing disorder and prosopagnosia. In this episode, she discusses what it was like when her son was first diagnosed, adjusting each year to new teachers, and what it is like to go through the ups and downs of parenting children who are ‘differently wired’.

Transcription

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Welcome to the Mothers on the Frontline Podcast, episode 28. Mothers on the Frontline is a nonprofit organization, founded and run by mothers of children with mental illness to promote caregiver healing and children’s mental health justice through storytelling. Our vision is a world in which mental health is destigmatized, respected, and prioritized as an integral part of the overall health of individuals, families, and communities. In this episode, we hear from Kate, a mother from Iowa whose children have autism, anxiety, ADHD, sensory processing disorder and prosopagnosia.

Tammy: So hello, tell us a little bit about yourself before or outside of mothering, who are you, what do you love, what do you love to do?

Kate: I love yoga. I’m a very fanatic yogi and what has happened with my son has really put me in touch with yoga and with mindfulness so I really like to do that. I like to walk, I like to do gardening and I just, overall, I’m a very positive person, and I like to just have fun.

Tammy: Well that’s wonderful, it’s wonderful. So I want you to pretend you’re talking to parents. What do you want them to know about your experiences? What can you share that may be helpful for them to know?

Kate: So in 2014, my son was officially diagnosed with ADHD, oppositional defiant disorder ODD and anxiety, and we have been going through a struggle which started actually with him in preschool. Where we had seen some of the signs but we weren’t quite sure. He also has allergies, and because of that, he had to be on steroids sometimes. So it was very hard to figure out what is normal two to three-year-old behavior, what is induced by being on steroids and what is behavior that is cause for concern. And at that time too when I would be talking to my parents-in-law, often they would say like, well, you know your husband was just the same when he was little. But then after a while, we were really starting to struggle. It was hard for us sometimes to enjoy weekends. Where you’re looking forward to Monday because it’s so draining, emotionally draining to be around your little guy. And there comes a huge guilt complex with that because you feel like it’s your fault, you’re not doing something right. And after a while, my husband and I, we were just like, we need help. And at the time he was in daycare which also had a preschool tied to it. They were very open to working with us, so we, they said like, we’ll have somebody from Grant Wood AEA come in, evaluate, and then we’ll just see what happens. We did that. There was some cause for concern and then we also, on our own reached out to psychologist and start working with her. And then in 2014, by the year before he went to kindergarten, he got officially diagnosed. So which was for us, a lot of things sort of all the puzzle pieces start to come together. And we were just relieved in a way. But then, on the other hand, it’s like there’s a huge learning curve. Because now it’s like, I know what it is, but what do I need to know? So…

Tammy: Right. So, for parents who are out there who are starting their journey, they haven’t had the diagnosis yet or ones that have just got it. Like what could you talk about in terms of barriers that you have faced that had been hard for you to get your child the help he needs?

Kate: Personally for myself, I think I was the biggest barrier because sometimes you’re in denial and you think like oh it’s just the age. It will be okay. This will, well, will resolve itself down the line but it’s not. So it just, once you come to that realization and also give yourself a break. I think sometimes as parents, we all try to do a really good job but we’re only humans too but we’re really hard on ourselves. And a lot with mental illness diagnosis, there’s a lot of shame I think sometimes connected to it as well.

Tammy: Absolutely.

Kate: So people or parents it holds them back at that shame but it’s okay to ask for help.

Tammy: Absolutely.

Kate: And I think that sometimes that was a barrier for myself. Like I’m always being very independent. I’m a go-getter. I just get things done myself. But there was a point that I reached that I was like I don’t want to live like this. This is not normal. If I’m doing something wrong I need help and I need somebody to let me know, how I need to adjust my parenting style because I want to enjoy the time I spent together with my little guy.

Tammy: You brought up several things that are really important. I mean one is it’s really confusing and you don’t get to have a control. You have a kid, you don’t get to have a scientific control and say okay what really is causing this. Let’s change some variables. No, and especially for those of us who, it’s our only or first child. It can even be, we don’t know what normal is and it’s such a wide range. So it’s hard to know if this is neurotypical development or it’s something we should pay attention to. Is it just quirky or is it something that’s problematic that they need help with. So that’s just hard to know. You also brought up another element which is the shame, right? And so asking for help and the third thing is if your child, there’s something going on, we often have to adapt. So it isn’t that our parenting is wrong, its our parenting is wrong for the child with this neurology.

Katie: Exactly.

Tammy: So there’s no one right way to parent. It depends on the child’s needs. I love that you brought up all that. I just wanted to go back. Oh, yes, I think that’s a really important for us trying to go through it. It gets all mingled up. So I love that. 

Kate: And then there was what I had to like I was going by how I was raised by my mom and dad, and I think they did a superb job, but I was a very easy kid. I will always, I listened, I didn’t fuss a lot and I was also raised and I think a lot of people of our generation are raised like that. If mom and dad ask you something, you do it and that was the hardest for me. Like why is my kid not listening to me? And because of his ODD diagnosis, he’s not as much defiant towards the dad but it’s more towards me. Which is weird too because they always say like they will be less defiant to the authoritative person in the relationship but that’s actually me [laughs] who’s the one that [inaudible]. He’s like yeah if go to mommy and asked her that, I’m not going to get away with that. I’ll just go to dad. [laughs]

Tammy: [laughs] You know but that’s another thing. Just like all kids and all human beings they are different with different people and it can be really, it can hurt our feelings. Like it can be really hard when we’re the ones seeing the symptoms, right? And so that can be really hard and often it could be because we’re the parent they feel safe with or the person they feel safe with in terms of they know they’re not going to not love me if I act up. As opposed to like a stranger, a teacher or something like that. They might hold it in more or something. Yeah. No. It’s really hard. So, same thing. Thinking about parents out there, what has worked really well in getting help for your child? What had been some successes or things you’re like, thank goodness that that happened or is available or–?

Kate: The number one thing for me was first, I had to change myself before I was able to help my son. I had to let go of control. I had to let go of worrying and that goes often with control because you want to know, oh, what’s going to happen then? Well, how is this journey going to be? Is it always going to be like this? And after a while, I just let go of all of that. I’d lived day by day. I take one day at a time. If we sometimes have a bad day, I always say, tomorrow is another day and we start with a clean slate. And I tell my son that as well. For myself too, I let go of emotions because I had such an emotional kid, and he still is but we’ve really worked hard with him on helping gauge his emotions better or that he’s just more aware of them and then he will be able to stop himself. And I think sometimes maturity helps with it as well. But at the time when we were struggling, I would always get like asking put your shoes on. It was like World War III. And it’s the battle you engage and you get worked up and you get upset and you start yelling, which I hate to do or you hear yourself the whole time just saying no, no, you can’t do this because he’s like all over the place. That for me was just letting go of that control and just being aware of that. Like I’m not going to go invest my emotions in that. I’m going to be very patient. I’m just going to take a step back and stay calm. And that has really helped like it’s not always successful.

Tammy: It’s not easy. 

Kate: Sometimes I have to dig really, really, really deep or I’m thinking like, oh, I really want to do this or this and this right now but no, I don’t look good in orange so I’m not going to do that. But then again, that helps me just sometimes to get through it because the sense of humor. Just being aware of like this is a very tough situation and I’m just trying to do my best. And sometimes I can’t do that and I walk away. And I give myself that break then I’m just like I can’t handle this. I just walk away and it’s okay. 

Tammy: It’s not only okay it’s great modeling for your son. 

Kate: I try to. Yeah.

Tammy: And it’s really important for you and me and all mothers and caregivers. It’s wonderful that you’re doing that. But it’s hard. 

Kate: It is hard. It is extremely hard and sometimes you feel like I am on top of the world, I got this down, I like my new parenting style, I become calmer, more patient, I don’t let my emotions get a hold of me that much anymore and other days you’re just like oh, I suck at this. 

Tammy: Right now, it sounds like you’re talking about when it was really rough, but even when things are going well, we recognize, they change from moment to moment and so we like to ask right now, do you feel like you’re swimming, drowning, treading water, where are you at right now?

Kate: I feel like I’m swimming but I also know due to his ADHD and his ODD, especially at the beginning of the school year can be quite challenging. He knows the principal, he knows his special ed. teacher but it’s always like he has a new teacher. So he tries to kind of figure out like what can I get away with and this is where the behavioral issues like the defiance will come in. He doesn’t want to do his math which he’s really good at but he has a love-hate relationship with it. And he’s just trying to testing the waters so I know maybe by next week, the week after that, we’re going to hit that wall where they’re going to say well, he did this today and he did that today and then after a while, by October, November, he’ll be like, no, the teacher, she sticks to her guns. I can’t manipulate her. I’ll just comply. I’ll just do my math. I’m good but I always am aware of that. Like last year, we hit a wall again to where his medication that he was on for his anxiety was not working anymore. So we really saw, because he was older, so we had to switch medications.

Tammy: Which happens a lot when kids are developing. 

Kate: Yes, exactly because the current dose like what he was on was no longer working and we just saw certain behaviors reappear again that we were like, oh, we thought we were done with this. But then we were aware of that and then we informed the school about it. We said we’re going to go to the psychiatrist. We’re going to explain this and probably we’ll switch medications, which happened but then most of his medications, it takes about at least four to six weeks so we communicate that to the school. Then it was like “hang in there, we know it’s rough. We’re with you because what you’re experiencing in school, we’re experiencing at home,” but then the medication started to work and he’s been doing great. So I know down the line, we will always hit rough patches but I’m aware of that. It’s almost like an expectation that I know like, yeah, we’ll go there.

Tammy: Let’s talk about that a minute because I think that’s really important. It seems to me a common thing, I know in my own experience when I talk to other mothers and other caregivers. The first time is devastating, when you first have symptoms erupt and then things happen  – maybe a therapy, maybe a medication, things seem to do a little better and then things happen again and that seems to me the most devastating because you first thought we’ve knocked this like we have this imagination–

Kate: We got this down.

Tammy: — we solved it.

Kate: Yeah. We solved it. [laughs]

Tammy: Like it’s cured. No. And so but then there’s a kind of confidence that comes with going through a few cycles knowing you can do this. You got it. It’s hard but you got through in the past. You’ll get through again. Take it a day at a time. That’s how you do it so I think that’s a really important thing for people to hear who are just having the first time or what I think is even harder is that second time things start to get rough. To know it will ebb and flow and you’re okay, you’re gonna be okay. 

Kate: Yeah. Exactly. And it was how you described it. That’s exactly how it is because I think even if you get a diagnosis in a way you have the expectations. You’re like I know it’s really rough right now but later on, they will be okay and all of this is just magically going to go away. No, it’s not. It’s just going to be a day they become older. A lot of again, maturity helps a lot with some of the disabilities that my son has  – but my husband actually got diagnosed a year afterwards because he said, well, I’ve been having a lot of these struggles that I see in our little guy now. And a lot of the behaviors I was like that when I was little. So I think I’m going to get myself tested as well. So he has ADHD as well but it was a good thing. It was kind of knowing like and for him especially, going on medication, that helps so much.

Tammy: And this is another common thing. It happens for a lot of parents because there’s a lot of genetic passing down many of these conditions and our generation and generations before us didn’t have the knowledge and the outreach on this issues so I know many people who are getting diagnosed after their kids are do. It can help everybody so much. So that’s really wonderful that happened.

Kate: For us, it’s been a real, a real positive like you go through that, you sat on that journey and then you were like a lot of things and especially for my husband, a lot of things started to make sense in his world as well then. And then some of it was a little bit grief knowing that I remember when he went the first day on his medication, by noon, he said like I’ll never forget it. “Wow, is this what it feels like to be normal?” And then the second thing that he said was, ”I wish I would have had this medication when I was in college.” And that to me just showed how much of a struggle it can be and that explains also the stigma that is still on mental disabilities because often people, they will look at a person, they’re like, well, I don’t see anything wrong with them.

Tammy: Invisible disabilities are tough. 

Kate: It’s really tough and then there’s the behavioral issues and then kids start to act out but then if you don’t understand the disability like people are well, why are they doing this wrong? It’s okay. It’s normal because I always say, there’s a lady that actually wrote a book this year which I’m a big fan of and I would strongly recommend to parents, especially to moms to read it. It’s Differently Wired: Raising An Exceptional Child in a Conventional World. It’s by Deborah Reber. And she calls her kid ‘differently wired’.

Tammy: I like that.

Kate: And I call my kid ‘differently wired’ too or an ‘atypical kid’. It’s like they’re just a little bit differently wired. Their brains make a little bit, there’s different connections in there but overall, they’re still good kids. They’re fun kids. Because I think sometimes there are so much attention is being given to their negative behaviors and these kids so much need to positive reinforcement. They need it so much more than your regular wired kid. 

Tammy: Absolutely. Absolutely. And I think that’s true and also sometimes, the differently wired comes with benefits that we don’t talk about enough too. I think that’s one the things as well. So we’ve been talking a lot about your journey with your child but what is your self-care routine or if more appropriate ‘survival technique’? I know you mentioned yoga and mindfulness which are so key I’m sure. So do you want to talk a little bit more about that? How does that help you or are there things you do to sort of take care of you?

Kate: Sometimes it’s easier than other times. I feel sometimes when things are going really good, you’re very motivated to go to yoga class and being mindful, but I know there’s one year more like in the survival awareness or survival mode. It’s like I’m tired. I don’t want to go do this. No, I don’t feel happy right now. I don’t want to go to a yoga class  – but for me, if I’m aware of it and I can have that conversation with myself then I push myself to yes, you got to leave everything right now because you talking to yourself or having this little mind games going on, that means you need to get your butt to yoga and go relax for an hour and then usually, by the end of that class, I’m like, oh, I so needed this. [laughs]

Tammy: I’m me again. [laughs]

Kate: And for me also, I have great friends. They understand. They’re part of my gang. They don’t judge and sometimes when I’m struggling because at sometimes you don’t want to necessarily talk to your husband because their going through the same thing. You’re talking about it but you always need that perspective. You always need to talk to other people that have gone through the same experiences or understand and that really helps like when I’m sometimes struggling and I’m like, oh, what am I doing wrong? Or not just that. You just hit a rough spot again. I just I’m like okay, we’re going to have breakfast. Get together with my friends and then after a two-hour talk, I’m like, I got this. 

Tammy: That’s a really good point because as you said it changes and I know with my own sisterhood of friends, right? We’ve been lucky that we’re not all crashing at the exact same moment somehow. I don’t know how that works out. It’s only happened once where we’re all like oh, no, what do we do? We’re all drowning right now but so you’re right. Because if you’re talking to someone like a spouse, a partner, even a mother or father, if they’re helping you take care of your children, if they’re involved with it and they’re going through the same thing at the same moment, they’re going through it too. So having that outside group that understands is so helpful to have that support and I think that’s right. So we like to end with this question. And we feel like anyone raising kids, this has nothing to do with neurotypical or not. There are some funny things those kids have done or that have happened in our lives that make us smile. So we like to ask, what is your most laughable moment when you think about your experience with your son? Anything that makes you smile or–?

Kate: He just makes me, he’s got a great sense of humor. I’m always so surprised because sometimes you get so much negative feedback what goes on in school and the school he goes to, they’re really great about also they celebrate the good things and we tell them to please don’t only you tell us when things are going wrong. We need to hear it when he is doing great because at school, they make a big deal about it and we make a big deal about it at home too. And usually, it’s a sense of humor. He will say this, I can’t quite recall thing but he’s just funny. There’s one thing, yeah. When he was little, I have a friend and she’s called Mary and she would come and babysit him at times just when we wanted to go get a break or, and she was very understanding. She was unjudging or anything and he knew how to handle him. And then one time, I was like yeah, Mary is coming a later on and he’s like Mary? He’s like, my Mary? And I’m like, yeah, and he looked at me very seriously and he’s like well, you need to get your own Mary. 

Tammy: [laughs] I love it.

Kate: And I’m like, okay. 

Tammy: No sharing Mary. [laughs]

Kate: No. 

Tammy: That’s great. Well, I really want to thank you for taking the time to talk to us and share your story and really appreciate hearing about it and how you and your family are doing. So thank you.

Kate: Thank you for giving me the opportunity. 

Tammy: Thanks. 

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Thank you for listening to the Mothers on the Frontline Podcast, copyrighted in 2019. Today’s podcast host was Tammy Nyden. The music is “Olde English”, written and performed by Flame Emoji. For more podcasts related to children’s mental health go to MothersOnTheFrontline.com or subscribe to Mothers on the Frontline on ITunes, Android, Google Play, Stitcher, and Spotify. If you would like to support our work, please make a tax-deductible donation on our website – again, it is MothersOnTheFrontline.com – that is one word – MothersOnTheFrontline.

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Definitions of terms or acronyms used in this interview:

AEA – Area Education Agency – A regional education service agency created by Iowa Code to provide education services to public school districts and nonpublic schools within the AEA’s geographic boundaries. They provide many services, including special educations support.

Book recommendation in this interview:

It’s Differently Wired: Raising An Exceptional Child in a Conventional World.  by Deborah Reber.

The difficulty of getting the right diagnosis and juggling work and care giving, Just Ask Mom Episode 14

Lotus Flower Logo: Just Ask Mom Podcast Series Produced by Mothers on the Frontline. MothersOnTheFrontline.com

In this episode, we listen to Suzette Southfox, a Southern California parent of a 19 year-old son with depression, anxiety and Autism Spectrum Disorder. She tells us about her over ten-year journey with children’s mental health. She discusses the importance of honoring the strength of our children and others with depression who fight each day to get out of bed.

Transcription

Voice Over: Welcome to the Just Ask Mom podcast, where mother shared their experiences of raising children with mental illness. Just Ask Mom is a Mothers On The Frontline production. Today, we will listen to Suzette Southfox, a Southern California parent who lives with her 19-year-old son who has depression, anxiety, and autism spectrum disorder. She has been on the Children’s Mental Health journey for over ten years now. This interview took place at the 2017 National Federation of Families for Children’s Mental Health conference.

Tammy: Just tell us a bit about yourself.

Suzette : Sure. My name is Suzette. I am a tired mom. I work in the Behavioral Health Field in Southern California. I’m an artist and I’m a writer and a performer. I love to communicate and chat with folks and and create art when I can. Don’t get a lot of chance to do that these days but that’s really what brings me joy.

Tammy: Oh, that’s really great. That’s awesome. What kind of art you do?

Suzette: I do a lot of reflective art. I do a lot of spoken word poetry.

Tammy: Oh, wonderful. Yeah.

Suzette: I do spoken word but I don’t have a whole lot of time to do that. I recently did something for a friend of mine who was just ordained as a Unitarian Universalist minister and I was, I was honored to be part of the ordination and I got to do this, it was fun.

Tammy: That’s exciting. That’s awesome. I want you to pretend that you’re talking to parents who are just beginning the journey. They just received the diagnosis for their child of a mental  health condition or maybe they even haven’t discovered a name for what is going on yet, they’re just trying to figure out how to help their child. What would you say to people with that experience based on what you go through?

Suzette: That’s a wonderful question and out of all the people that I would like to talk to  – and there are  many, many that I would like to speak with – the family that’s really finding themselves newly in the world of childhood mental health and behavioral health issues, I would love to talk to them and I would love to tell them that they’re not alone even though they feel like they’re alone. They’re in a very special club which is one that not a lot of people want to join, but they find themselves in.

Tammy: Right.

Suzette: One of the things that I did not get early on and my son was diagnosed around nine or ten years old with ruled out pediatric bipolar disorder and things were very difficult. It wasn’t until he was 16 when the psychiatrist said, “Was he ever tested for autism?” We said, “Are you kidding me?” So, people, weren’t asking the right questions, but once we found ourselves in the world of IEP’s and special ed programs and all of this, we never met another parent. None of the programs ever had, “Here’s information for your parent,” or you would think that the psychiatrist or the psychologist would say, “Here’s your brochure. Welcome to the world of pediatric mental illness. Here is your road map.” They don’t give you one.

Tammy: Absolutely not.

Suzette: No, they don’t and if you’re lucky enough to have someone with lived experience, you may get a road map but it’s so challenging. Finding those other parents and finding what is available is so difficult when you’re dealing with just the stress and the crisis. I was shocked to learn in my area that there was a whole guide for all of the programs and services but it was for other providers. It wasn’t for families and it took me to get into working in the field to actually discover this.

Tammy: Is that what motivated to get into the field?

Suzette: Well, that was one reason. I work with the Faith community for a really long time and what I discovered was the needs and the stress of navigating my son’s challenges. They were taking a toll on my working life. Before we got the diagnosis either I would call in sick, my wife would call in sick. We would be having to leave work. We knew that one of us would probably going to lose our job. She took an early retirement to stay at home because at that time, my son couldn’t get out of the car in the morning. He missed 125 days of school because of anxiety. As we’re going through all of this, we have support of the school but we just didn’t know other families. I think it’s so important to not only tell folks that they’re not alone but there are networks. You just have to be told where to find them.

Tammy: Absolutely.

Suzette: Yes, and that’s the biggest challenge, I think.

Tammy: I think that’s so important because I know my own experience in talking to other people sometimes the most helpful information I’ve got are from other parents, you know, that have been through it. They all checked out this program or this and without that network, without some way to start, you do feel lost so I think that’s really good advice.

Suzette: Yes. There’s a lot of despair also. At least there is and there has been with me and one of the things that I have learned is there’s a whole continuum of what you go through and it’s not linear. It’s not like, “Okay, I’ve gone through crisis and now I’m balancing and I’m moving into advocacy and when I get into advocacy, boom, I’m done.” No, it depends on the day really.

Tammy: Absolutely.

Suzette:  You can go through that continually. I think one of the things that I would want new parents and new families to know is the despair and the concern is visceral, it’s real. It’s probably not going to go away but if you learn to kind of make some space for that and make some space for dealing with it, it gets a little bit easier.

Tammy: Right.

Suzette: I think the biggest problem that I have, and this is really funny, we’re talking about self-care earlier, is when people say, “Take care of yourself.” I know that but it is so difficult to hear because it’s like, “What do you think I’m doing?”

Tammy: Right.

Suzette: I’m trying really hard.

Tammy: Exactly.

Suzette: Sometimes, just getting up in the morning is like, “Whoa, it’s a win.”

Tammy: Exactly.

Suzette: So that’s important and I know self-care is really, really the key, but I think that we need to be a little careful how we talk about that.

Tammy: Absolutely.

Suzette: Yes, it can turn people off.

Tammy: And we don’t know of access to do the same things to care for ourselves. I think that’s another part of it is what does that mean and the context you’re in at the moment, what can that mean for you, right? I think that’s really important.

Suzette: True.

Tammy: Absolutely. As you’re thinking about people who are navigating this early on and it is hard and is lonely and I like the message you have. I do think we can get to a point where we feel like it’s a new normal. We’ve accepted it. We’re functioning. We don’t feel torn apart all the time but then something new will happen and you go through it again. I think it’s good to know that. It’s good to know you will actually function at this level. You might not feel like it when you first hit with it, but I don’t think you’re even done and I think that’s important to hear too. That’s not a bad thing.

Suzette: Yes.

Tammy: But knowing it’s important because if you don’t, the first time it happens again, it feels devastating.

Suzette: Yes.

Tammy: But if you don’t know, you’re going to keep going and having good days and bad days and it’s okay.

Suzette: Right. It’s a learning and then when our loved ones are youngsters, you have the whole developmental issue going on so they’re constantly changing. One of the first, kind of, desperate requests that I made once we had a psychiatrist and medication and treatment plan and psychiatric nurse, God love her, I remember the first call that I made to her was, “I don’t know. I have one child. I was an older mom so I have one child. I don’t have experience. I can’t tell the different what’s developmentally appropriate and what is a mental health condition.” And she said, “Oh, if you could figure that out, you’d make a lot of money,” because I couldn’t. I just couldn’t figure that out. Now, knowing that there’s always that change. There’s always new things happening, suddenly and it’s not suddenly, but now I have a young adult and so we hear about transition, transitioning youth, how do you do that? I have a 19-year-old but I’m not prepared for what to do next because just getting through middle school, getting through high school took everything that I could do. I know they said it’s coming. You have to start when he’s 14. I didn’t get that until he was 17 and so it’s hard. It still gets hard but being able to back up a little bit and figure out, what are the new resources that I need? I have to find maybe a new set of parents. We’re the parents of really young kids. We had an affinity.

Tammy: Right.

Suzette: I would look at parents of teenagers, I was scared of that.

Tammy: Oh sometimes it’s terrifying, right? When your kids are little. You just want to focus on that one thing at a time, absolutely.

Suzette: Yes, and you look at parents of teenagers and young adults and it’s like, “Oh my God, how did you do that? I don’t want to go there ever,” and you’re going to get there.

Tammy: Right. Absolutely. As you’re thinking about your journey in helping your child, can you think of one particular thing that’s been really challenging, was really difficult, that just didn’t work and you wish could be different?

Suzette: This is going to sound really weird, but listening to him. What I mean by that is, sometimes, and this has been forever, he will tell me what he needs but I’m not hearing it and I’m not hearing it because, oh I don’t know, I’m focused on one thing or another. When I stopped and really listened to what he’s saying, we do better.

Tammy: Right.

Suzette: When he listens to what I’m saying, so it’s like communications piece there.

Tammy: Absolutely.

Suzette: Here’s the hardest part, I’m not very good at it. I communicate professionally but with my own family, I was like, “Wow.” I really have to take it down to basics and give myself permission to make mistakes. That’s the big one.

Tammy: That’s a good point. I think that’s true for any parent, right?

Suzette: Yes.

Tammy: Communicating especially with the teenage kids is hard. It’s challenging, I think, for all of us.

Suzette: Yes and you have to learn how to reset boundaries and you have conversations, and when and if they get a driver’s license, it’s a whole different world. It’s really exhausting.

Tammy: My stressor have just opened up when you said that because that’s what’s in the next couple of years for us, the whole driver’s licensing, yes.

Suzette: It has been an amazing journey and I’m just watching the young people that I know develop and grow, it’s just so exciting.

Tammy: In thinking about getting your child help, what’s worked well? What has been one thing that you’re just so glad things were aligned and worked out well?

Suzette: Well, we had an experience and it was a school related experience as a senior, a high school senior. His depression was so acute. He spent the last two or three months in bed and was not able to even shower or to mention anything and he failed. He wasn’t able to graduate and having that conversation with the school around that, I was empowered.  One of the vice principals basically said, “You know, you’re lazy.” I just took a breath and I said, “We need to talk,” because there’s something called lived experience and I have never used that word before but I heard it and  all of a sudden, “Oh my God, I have lived experience and I have a thing too,” so I’m coming and I have something. I was able to really put the context. We’re talking about behavioral health diagnosis. We’re talking about mental illness, brain chemistry. This is not being lazy. If you had any idea what he does to just survive, I don’t know that any of us could do that so it’s not lazy.

Tammy: Right.

Suzette: That was very, very helpful to me. Really clear in my own mind that we all need to be on the same page, so that was super helpful.

Tammy: Absolutely.

Suzette: Yes.

Tammy: So good for your son to hear that, “No, you’re not lazy and I know you’re not lazy,” I think it’s important. That’s great. We ask this of everyone because we recognize, as we were just saying, as you pointed out, this is different from moment to moment for all of us, but at this moment, are you swimming? Are you treading water? Are you drowning? Where do you feel at this moment?

Suzette: That’s really good question; all three of those, yeah, yeah.

Tammy: That’s a good answer.

Suzette: All three of those. All three at the same time and it’s so hard to manage that, but really I have kind of like a low grade. It’s not a panic but it’s a low grade like, “Help,” because it’s all really hard.

Tammy: Right.

Suzette: I feel like I have good resources and good support so I’m going along okay. I guess I’ve been doing this for so long that my new normal is not what anybody else’s normal is.

Tammy: Exactly and I think that’s what’s really important is you get to a point where this, I can function at this level, even though the average person would be falling apart and maybe we fell apart when that was first our experience. That’s why I love what you said about your child, because I think we often see someone who’s struggling to get out of bed or struggling to go to school and people will say things like they’re lazy or say that someone is anxious so they’re just scared all the time or what have you. The truth is with their condition, they are like super-power to do what they do every day. There are more courage than most people just to do what they’re doing or more strength on going, fortitude to go get something done. I think we just need to give people credit for what they’re doing and I’m in that for them. I love that you said that earlier too.

Suzette: I think it’s struggle that we constantly revisit. I don’t know if anybody else’s have this come out of their mouth, but I’ve done it on number of occasions; “What’s wrong with you?” I don’t mean to say it. Oh my God. I said it once and he turned to me, he says, “Do you really need to know? Would it be easier if I was on a wheelchair?” I thought, “Oh my God. I’ve even said this to other people and I myself am saying this now?”

Tammy: Right.

Suzette: So it’s constantly guarding and learning and checking and remembering.

Tammy: I think that’s a really good point because most of the people we’re interviewing here, they have a child with a life-long condition, right? If you have a child in a wheelchair with a life-long condition we don’t say, “Well, why is it we don’t get up today?” After ten years of being in a wheelchair, right? But we do that.

Suzette: Yes.

Tammy: We do that all the time and I know I’ve done it and actually, when my child’s teachers or family members have to say, “Why is he doing this now?” I’m like, “You know this has been a condition all this time.”

Suzette: Yes.

Tammy: I think that when we’re asking that, what we have to do is sit back and go, “What is it about this moment that I can’t handle?” Because this is our normal, this is our situation.

Suzette: Yes.

Tammy: I’ve imagined that if you do have a  child in a wheelchair for ten years, there might be some days you can’t take it, but you would recognize, “My child’s circumstance hasn’t changed. I’m just having hard time handling it today.” We need to be able to do with mental health and say, “My child’s has the same condition but today it’s really hard for me to deal with.” Did that make sense?

Suzette: Absolutely.

Tammy: I love the comparison that you make there. I think it’s important.

Suzette: Absolutely, it is. You’re absolutely right. Then to give our kids the language to know that, and when he checked me on that as he often does with words that have come out of my mouth, he responds and like and I’m learning constantly from him especially when it’s difficult. He has a sleeping disorder and he goes nocturnal. He also has separation anxiety so when I’m away from him as I am now, he gets very tense.

Tammy: Right.

Suzette: He called me at 7 o’clock this morning which was four and I just checked him 15 minutes before we started and he hasn’t slept yet. I’m very concerned about that and what the household is like and what the stress is like, but you know, it’s just a day.

Tammy: It’s just a day.

Suzette: It’s just a day.

Tammy: Yes, absolutely. What is your self-care routine or as we say with more appropriate, survival technique, because sometime that’s what it comes down to too, right? How do you take care of you when you’re in the middle of all of this because as we’re saying, it’s not always possible to do what we’d like to do so what do you do?

Suzette: You know what? My go-to place is the bathroom.

Tammy: Yes.

Suzette: Sometimes it’s not real safe if there’s pounding or screaming on the other side of the door but if I can get to a place where I can just be isolated and I usually turn the lights off and I just breathe. Just for a minute.

Tammy: Right.

Suzette: Just for a minute and then go back out and I can do that at work. I can do that at church. I can do that at lunch[?], so you can do it anywhere. That’s one thing if it’s a crisis and I just need to step back. I swim and when I’m lucky, I swim in the ocean. I do that regularly.

Tammy: Oh, I’m jealous.

Suzette: I swim with mom.

Tammy: That’s sounds wonderful.

Suzette: She’s a good swimmer. She’s been swimming for years. When I have a chance I get in the water and it’s really wonderful.

Tammy: That is wonderful. That is great. Another question I’d like to ask, because any parents has some of this, right? Kids keep us laughing. What’s your most laughable moment? What makes you laugh or smile when you think back to your experience with your child?

Suzette: Oh my gosh. My son is a professional magician and when I watch him engaged with other people, I mean it’s amazing when you see grown adults going, “What happened? How did that happen? Oh, my God.” It’s just makes me chuckle because he has such a gift to be able to do that, but he does it because he likes to bring joy to people, right?

Tammy: That’s wonderful.

Suzette: So he’s a champion. He’s a knight in shining armor and he loves to bring joy to people and that makes me smile.

Tammy: That has to be fun. You get to enjoy the magic but you also get to be proud of this amazing kid.

Suzette: Yes.

Tammy: Or adult now but always a kid, right?

Suzette: Yes, always a kid. Yes, definitely.

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

Suzette: You’re welcome. Thank you for asking.

Voice Over: You have been listening to Just Ask Mom. Copyrighted in 2018 by Mothers On The Frontline. Today’s podcast host is Tammy Nyden. The music is Old English, written, performed, and recorded by Flame Emoji. For more podcast 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 or Stitcher.

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