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

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

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

Transcription

[Music plays]

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

Dionne: I want to say thank you very much–

Shanta Hayes: Thank you for having me.

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

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

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

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

Dionne: This is the self-care advocacy.

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

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

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

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

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

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

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

Dionne: That’s important.

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

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

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

Dionne: Exactly.

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

Dionne: Yeah, that’s so true.

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

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

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

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

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

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

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

Dionne: Tell me more about floating.

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

Dionne: And my son is not.

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

Dionne: That’s a good point.

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

[Laughter]

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

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

Shanta: That was like [makes a sound].

Dionne: [Laughs]

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

Dionne: I like it. I love aromatherapy.

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

Dionne: Yes.

Shanta: [Laughs]

Dionne: On top of it you smell nice.

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

Dionne: I want to come to your house.

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

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

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

[Laughter]

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

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

Shanta: Thank you.

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

Shanta: Thank you.

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

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