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

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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