Every Child Deserves a Miss Honey

As a child one of my favorite books was Roald Dahl’s Matilda.  Having dyscalculia, I related to how Matilda was often misunderstood and looked at as “odd” by her family and classmates.  Like Matilda my mind would also wander, I imagined myself on grand adventures, solving problems, being a hero to my friends and defending myself against class bullies. 

In second grade I took my first standardized test. I remember flying through the reading comprehension and writing sections on the first day but once we got to the math portion on the second day, I hit a wall, I was not able to complete the test past the second page.  When we got the results, the discrepancy between reading/comprehension and math reasoning was so large that they made me retake the test three times, and three times I produced the same result.  Not knowing what to do with me, I was placed in the back of the class – with reading material and given worksheets for math so that I could “follow along with the class at my own pace.” Without remediation for math the worksheets made no sense, but I quickly learned that my teachers (grades 2-4) would not bother me if I read quietly.  I didn’t want to do math and when anyone – teacher or my mom – tried to force me to do math problems, I would become angry and resistive. This behavior garnered me the reputation of being oppositional and lazy.

It was not until the 5th grade that I met my Miss Honey.  As accidental luck would have it the fifth-grade class for Indianapolis School #43 was exceptionally small, so small in fact that the school decided to combine 4/5th and 5/6th grade classes.  For a child with undiagnosed dyscalculia this could have been the beginning of the end (children with learning disabilities are three times more likely to drop out of school than those without learning disabilities).  Luckily for me I had a teacher who, for the first time in my elementary school years, saw me.  Mrs. S  noticed that, although I did not and could not perform basic math tasks such as simple addition, fractions, and telling time, I WAS reading books of all varieties, science, non-fictions, history, and lots of them.  In the two years between testing and entering 5th grade my reading and comprehension skills had only increased. It was not uncommon for me to raid my mother’s bookshelf and I frequently asked her to check adult books from the library so that I could read.  Like Matilda’s Miss Honey, my 5th grade teacher began talking to me during break times, we often had lunch together where we would talk, I also stayed after to school with her where she would tutor me – quietly and painfully in math. When she noticed that I could complete some math tasks if I used my fingers to count (which was forbidden for 5th graders) she devised a “safe” way for me to count using my fingers and the shapes of the numbers.  (Safe in that the math teacher would not see me counting with my fingers and give me an “F”.) She gave me extra time for test and arranged for me to take my standardized test in the library un-timed instead of with my classmates.  When the school wanted to move me to a separate behavioral school because I was falling behind and acting out, Mrs. S called my mother and helped her to complete the appropriate steps so that I could attend RTI (Response to Intervention) classes twice a week for math but remain at my home school. This was 1982 a full 8 years before the Americans with Disabilities Act came into effect, so there was no 504 or IEP, there were no guidelines for teaching and accommodating children with learning disabilities. To this day I have no idea how they managed, but Mrs. S– with the help of my mother – managed to come up with a set of accommodations that would see me through middle school, high school and college. Like Miss Honey from Matilida, my Miss Honey became my biggest champion at school, my best interpreter, and my most important guide.  She helped me understand my disability and then helped me find ways to incorporate that knowledge so that I could better navigate through school and through life. It helped me navigate through graduate school, to a Ph.D. and to my current job as a professor. Every child deserves a Miss Honey and we at Mothers on the Frontline would like to give a heartfelt “thank you” to all the Miss Honey’s working to improve the experience of our children at school.

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

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

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

Mentioned on this episode:

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

Transcription

[music in background]

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

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

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

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

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

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

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

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

Diana: Every day.

[laughter]

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

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

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

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

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

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

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

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

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

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

Diana: Yes.

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

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

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

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

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

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

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

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

Tammy: That’s not easy in this situation.

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

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

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

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

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

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

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

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

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

Diana: Right.

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

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

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

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

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

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

Tammy: Wonderful.

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

Tammy: That’s great.

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

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

Diana: Yeah.

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

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

Tammy: Absolutely.

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

Tammy: Sounds like she’s awesome?

Diana: She is.

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

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

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

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

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

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

Tammy: You’re not alone there.

[laughter]

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

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

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

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

Diana: But you can feel very much like that.

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

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

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

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

Diana: Yes,

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

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

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

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

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

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

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

Diana: And that’s dangerous.

Tammy: It’s very dangerous.

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

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

Diana: Thank you.

[music background]

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

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

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

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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Raising Children with Both Visible and Invisible Disabilities, Ask the Advocate Episode 3

In this episode, we listen to an advocate with MomBiz Boss and a mother of children who experience developmental and mental health challenges. She speaks about being a mother of color and the experiences of raising children with both visible and invisible disabilities.

Advocacy organizations discussed in the Podcast:

National Federation of Families for Children’s Mental Health – A national family-run organization linking more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families. It was conceived in Arlington, Virginia in February, 1989 by a group of 18 people determined to make a difference in the way the system works. https://www.ffcmh.org/

Younger Years and Beyond – A local chapter of National Federation of Families for Children’s Mental Health that focuses on mental health and behavioral health challenges for children starting at pre-school through beyond. https://www.facebook.com/theyoungeryearsandbeyond/

Zaria’s Song – We Provide Support & Resources to Parents and Caregivers with Children Experiencing Physical, Cognitive, Behavioral and Mental Health Challenge http://ateducational.wixsite.com/zariassong

 

Transcription

[music background]

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

Dionne: Hello. Thank you very much for agreeing to do this. Would you like to introduce yourself?

Teresa: Sure. Thank you very much for having me. I’m Teresa Wright Johnson, and I will say that I’m a mother first and then an advocate. I believe motherhood is very challenging as a business, so I’m kind of known as an advocate and a MOMBiz Boss, and we’ll talk about that later. But I’m a mom of children that were born with developmental challenges as well as physical challenges and children that have mental health challenges, learning disabilities, and more. And I advocate for them.

Dionne: And you advocate for them. So Teresa, tell us a little bit about your advocacy journey.

Teresa: So my journey began– I’m the mother of four children. I bore four children. Unfortunately– but still, fortunately, have one living child. So I had several children that died very early on when they were born. And then my other two children were also preemies. In coming– you know this is November. This is National Pre-maturity Birth Month– Awareness Month. A lot of people don’t know that. And with premature children, sometimes you have greater risk factors. And some of the risk factors that happened and that were indicated with my first child who was Zaria– and I have do so much for Zaria in her name. She was born with various disabilities, more physical and cognitive. She had cerebral palsy as well as metabolic disorders like mitochondrial syndrome. She also had seizures, low-birth weight, feeding issues, mobility issues, just so many different issues. But guess what? That did not sway me. I wanted to be a mother. And once I found out I was going to be a mother to Zaria, I started to getting training at the hospital–

Dionne: Oh, wow,

Teresa: — so that I could be the best advocate for her. So over the years with Zaria, I started my own support group for mothers of color called Special Treasures, because I feel that our children are not just special-needs children. They are special treasures. They are treasures that open us up, expand us, push us way beyond our comfort zones, and stuff. And so I did that with Zaria. Zaria, unfortunately, passed away.

Dionne: I’m sorry.

Teresa: She had a seizure at school and passed away some years ago. However, the journey of her from birth to seven years old has got me to help hundreds of thousands of women and families to different organizations: speaking, training, coaching, learning, and advocating. And I would have never done that without that journey of Zaria. So, Zaria had all those special needs. And she also opened me up to stuff that I never knew of. I knew about special needs a little bit because my Mom when I was little worked in group homes. And I didn’t even know that was a group home I was going to because back in the day, I ended up having a single-Mom that was divorced. You could go about with your Mom. But that compassion that was instilled to me as a child, it really helped me with my child with special needs. Then the special needs group and different organizations– I’ve worked with Mocha Moms, which is a national organization for women of color that put their children and their families first with children with special needs. That was my goal when I was doing things for there. But then, Zaria had a little sister named Jade that was born. And Jade was a few years younger. But when Jade was born, again, she was another premature birth. So, I have to be on bed rest, all these different things to have children. And when Jade was born, she was typical. She was just a low-weight, birth-weight baby. But then, as she started getting older, she wasn’t crawling. She took a long time to walk. I learned about a lot of different things with Zaria that helped me with Jade. And so Jade ended up being very physically functioning. But emotionally, she was the baby that never stopped crying that I took to the hospital, and she didn’t have colic. She was the baby when I would leave with people – her godmother or whatever – they would say, “Um, call me. She’s still crying.” “Ah, okay.” She was the baby banging her crib up against the wall. Not just crying to get out. She was banging it. So, this led me from the journey with Zaria ended up getting all these certifications for special needs– being a Special Needs Trainor for the Department of Development and Disabilities or Babies Can’t Wait, The Early Intervention for Georgia for Zaria. But then, transitioning to Jade was solely different, because she didn’t have developmental disabilities. I wasn’t working with IEPs anymore. That’s when I learned about the 504 Plans and all that stuff. So, me getting educated to help my children, starting off with Zaria, helped me to educate other people, but they helped me even more for Jade. And so now I have Jade, and she doesn’t mind. Jade says– you know what I can always say is that Jade experiences ADHD and some behavioral challenges but highly functioning. Has been placed in AP classes, a very smart girl. But if I wouldn’t never had the experience of Zaria and all these training and support that we get from other mothers and organizations we just don’t know, I would never know how to function or help Jade. And that’s why I’m here today at the National Federation of Families for Children’s Mental Health Yearly Conference is because of Jade. She’s my ‘why’ for this. And so I’ve been able to advocate now for parents that have children with dual-diagnosis whether it’s developmentally or mental health. I definitely don’t want to be a therapist or anything of that nature. But I have so much training that I know that God, and whomever you want to call it, gave it to me to help my children and other people. And I just can’t imagine not sharing that. And I can’t imagine parents not understanding, once they learned how to advocate for their children, they are their child’s number one advocate, because nobody’s going to advocate for your baby – that part of you, like you.

Dionne: Yes. So as a Mom advocate, what would you say if you had to talk to– and you can fill in this blank with whoever you were addressing one group– and I know you’ve addressed a lot of groups. What would you want them to know about your experience as a mother of children with mental health challenges?

Teresa: Wow, so many things you want them to know. The one is that Mom– that guilt you might have, the, “So why is my child like this?” Or, “How are people going to look at my child,” and all those things. I want them to know that find the treasure in your child, because those hard days when– maybe you have a child that experiences some behaviors or disabilities and is a little bit slower, if you can have that treasure kind of in your head, those days when they don’t seem like a treasure [laughter], when they don’t seem like a treasure, you have something to refer back to because even though it may be hard the way that you have to deal with them, how they deal with you, as society looks at them, they’re your gift. And you have to find the gift that they are for you and the treasure in them.

Dionne: You talked about this because– and the days that they seem like that you are just questioning the universe. Can you tell us about one of those days? And then–

Teresa: Oh, I definitely can.

Dionne: — what and how you worked through?

Teresa: I definitely can. One, I worked through it because I have a great support system. I engaged with other mothers that may experience some of the same things, so that I have someone to vent to one that understands me. Learned that very early on with Zaria. When my friends with typical two-year-olds would talk to me about their two-year old but my two-year old Zaria was really still at three, four months, they couldn’t understand. So, go seek out those supports that are particularly going to be able to support you. So, even with Mocha Moms, it was not a special needs thing. But it was for a stay-at-home moms at that time, at one point for Black mothers. That is who I am. So, I’m going to go seek them out. So with the child that is especially– in a particular experience, one of my children is very– the emotional part is very hard. Sometimes, she has so many things going on that it is overwhelming for me. I was just sitting in a train and then I was sounding– though I’m trained to be– a Mental Health instructor, a Certified Panic Peer Specialist, a Suicide Prevention Gatekeeper, all that, when it’s my baby, it’s a total different thing. I remember those formats. I remember those structures. I remember those systems. But it’s not the same. So, you got to make sure you have support because there are days when I have to walk away sometimes crying from my child. I mean she hadn’t anything to me physically. But my heart is hurt because you see what they’re going through. And they might not even be able to see it. And you know the treasure you have. But right now, it looks more like the garbage truck. And I would say the amount of support you have is very important. And just being real. And remembering where is that sacred space, that treasure, where you have to think back about it, because sometimes you want to just throw in the towel, because we don’t show motherhood being difficult. We show motherhood with this pretty baby and the little kids outside playing. And when you have a child with a need, you have fewer days of that and more days of questioning, “Why me? Why my child?”

So I think to have that support system, to be able to vent with other women that understand or can listen to you, groups that understand you, and the same for your child is important. So my number one piece would be have a support system. Have somewhere you can go. And then of course remembering that treasure because even though it’s H-E Double Hockey Sticks or whatever you call it [laughter], we have to figure out a way to go back to the gift in it, because it’s so very hard especially with the mental health versus the developmental disability. Especially in certain cultures, being a mother of color myself when I had my daughter with cerebral palsy, it was easier for people to see, because she could walk sometimes. She can do stuff. But when they see my child over here having a meltdown, “You better get that baby get a beating. Get her shit. Got no manners,” or whatever. That invisible disability is so hard. So everything– I know all women can do it. But when you have a child with a need, sometimes you got to put on a tough skin, because people say things. So that support, that treasure, and that tough skin altogether.

Dionne: That brings up a good and important point because especially as mothers of color, so many of us, we are experiencing not just our own internal, what I call your internal voice. But then, you literally have the external voice telling you what you should be doing, what you should know. How do you advocate for yourself as a mother because you’re Fearless Mom advocate. I know you’re a fearless mom. How do you advocate for yourself?

Teresa: For taking care of myself?

Dionne: Yes, taking care– it could be taking care of yourself or standing up for you.

Teresa: Again, one, you have to make– write down your own rules. Who and what do you stand for? What’s important for you because I’m Teresa. I might not look like the other Teresa down the road that’s an African-American woman. What are my values? What’s important to me? And what’s important to me is that I live up to who I authentically am and who my family is. That’s one. And then, two, being able to really sit and think about what really is important, what’s not. You know the picture? Because we’re women. I don’t care what color you are. A lot of us fall into this picture thing. And guess what? How much do I really care about that picture or what it– I care more about reality and being happy. So that’s one. But as a fearless advocate, I really try to think about major– I don’t really care what anybody else thinks, because I know what’s going on inside of my house and inside of my mind and what I have to take care of. Like being here at the Federation of Families for Children’s Mental Health Event. A lot of people– they don’t understand that. But I don’t care. It’s about my need. So have put on that tough skin again the way that I, the Fearless advocate, that takes care of me as I think of myself. I put on a tough skin. I do take care of myself, self-care. One of the presentations I speak about sometimes is life beyond advocacy, because at some point you can’t just advocate for your child and do everything for your child as you want to sit over here, and you’re going to have a breakdown or something, too. So that tough skin and not worrying about what others think. And taking care of you and your family. But remembering yourself, too, because so many mothers forget about themselves.

Dionne: What’s your self-care pleasure?

Teresa: My self-care pleasure is– oh, I have so many [laughter] because I love that stuff. But my self-care pleasure really is just quiet space because I’m talker. And I’m always with people. So if I can go on a trip and be away or if I can go– I just recently started doing yoga and meditation. And that has been great, wonderful a way to do it. You might not have funds or something to do things or time– a quick hot shower with some music. And I think really music is one of my main things and ways of self-care, because you can get whatever mode you want. Dancing. I think we think about self-care as if it has to be the spa all the time. And it doesn’t. Or it has to be all these extra things. Just little things to take care of our self because to be able follow these advocacy and these children that experience various needs, they experience those. That’s not who they are. And that’s why I say remember that treasure. Remember who it is. As a matter of fact, my daughter’s name is Jade for a reason, because she’s a treasure. Let me remember. She’s a treasure [laughter]. So–

Dionne: I like that.

Teresa: So you have to figure it out.

Dionne: So I have two last questions. And then I want you to tell us a little bit about your organization and the shout out for your organization, where we can reach you, and everything. What’s your most laughable moment? Because a lot of these, for me, one of my self-care pleasures is just being able to sit back. And sometimes just laugh at what’s going on. What’s your most laughable moment?

Teresa: When your child that experiences a mental health challenge or behavioral challenges calls you on stuff, that’s the most laughable moment. They have to tell you to slow down or tell you to do something. And you hear them repeat back how you talk to them or deal with them. That is the most laughable moment, because I do really want to tell them, “No.” But really guess what, they got this somebody from somebody. And it might not be that you have a mental health diagnosis. But some of the stuff that we complain about our children or concerned about they are mirroring our personalities. And so that for me is the most laughable moment. So for me, I’m always moving and shaking. And my daughter, she’s a mover and shaker. But she’s a little slower. You have to prompt her like I do this or that. But she has to tell me, “Mommy, you need to slow down.” Surprised yesterday at the conference she said, “I’m surprised you didn’t lose your cellphone yet [laughter].” So that was like, “Oh, okay.” I said, “Oh, okay. Well, you know when I’m not with you…” because this is our first conference she’s been to as an attendee where she’s engaging by herself. So I said, “Well, Mommy try this all the time. I have my phone all the time.” She said, “Well, I’m surprised [laughter].”

Dionne: She’s little part of you.

Teresa: Yes, she’s watch me, because she see me put things down and do different things. So that’s my most laughable moment.

Dionne She’s just seeing you. reflecting you back at [laughter].

Teresa: Which is really good because that not caring what people think has been a little bit better for her with dealing with some of her challenges. But she’s learned that from me.

Dionne: Oh, that’s good. That’s important. That’s important. So is there one particular organization, group that you want to do a shout out, you want to talk about right now?

Teresa: So, since I’m at the Federation of Families for Children’s Mental Health Conference, I’m going to talk about my organization. It’s Younger Years and Beyond. We are a local chapter of the Federation of Families for Children’s Mental Health. You will find us on Facebook right now. And just type in The Younger Years and Beyond or Younger Years and Beyond. And we are a local chapter that focuses on mental health and behavioral health challenges for children starting at pre-school through beyond. I started this chapter when Jade was four or five years old when I realized something was going on. And I wanted it to grow with her. And that’s why it’s called The Younger Years and Beyond. We offer support, free and sliding fee scale, because we’re a family-ran organization. We have a fiscal agent, so we do have a non-profit status that we’re under right now. And we provide services for IEPs, 504 Plans. But most of our training to parents as well. So I’m a former trainer for several organizations in Georgia as well as a university for parents with children with special needs as well as some of my Board Members, meaning my Board Members also are very, very strong mental health professionals and staff. So we just do very– what we can. But we mostly have a lot of events. We are a family-ran organization meaning we are family funded and take grants here and there. We’re trying to decide one, going after more. But pretty much we have three events each year. One is a Mental Health Awareness event for children. Then we have a business one like Connecting Organizations. And then this year, we’re going to have a Virtual Mental Health Awareness event for children and families. So we’re going to have a family track, and we’re going to have a children’s track. And I’ve actually been at this conference, and I have booked like two or three ladies–

Dionne: Oh, good.

Teresa: — to already speak. So we definitely are going to talk your agency about all that you do, because we know we are about the motherhood thing here. So that’s we do. You’ll find us on Facebook, The Younger Years and Beyond. And if you can’t find us there, you can always look to Zaria’s Song, and that’s Z-A-R-I-A-S-S-O-N-G like Zaria’s Song because Zaria’s Song and The Younger Years and Beyond are kind of connected because development disabilities and mental health, because the money is separated. People always separate it, but you need you have to do diagnosis.

Dionne: We call it the pathway.

Teresa: Right.

Dionne: There’s many pathways, and a lot of them go through mental health or lead to. We will be sure to provide links to both of those. Or in our sites we have a resource link, and we also– once we put up your podcast, we will provide links. So anybody who listens to this can link. One more? Go ahead. One more.

Teresa: The one other thing that I wanted to say is we also offer training for Mental Health First Aid. We are mental health– I’m a certified Mental Health National First Aid Instructor. And we are adding on. We do it for adults right now. But we are adding on the Children Mental Health First Aid. And we know where our community and our society and our world is right now. So very important that we get that information out there to communities, families, organizations, schools, etc.

Dionne: That is very true. Mental Health First Aid. We can use that training everywhere: teachers, coaches, other parents. Well, thank you very much. I mean this has been a pleasure. This has been– and I hope to continue to talk to you, and work with you in the future. So–

Teresa: I’m so excited.

Dionne: — thanks for joining us.

Teresa: Thank you for the opportunity. I’m so excited. I love your dream. You all can see what she’s dreamed out all for mental health awareness. Thank you so much.

Dionne: Thank you. Thank you.

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Narrator: You have been listening to Ask the Advocate. Copyrighted in 2018 by Mothers on the Frontline. Today’s podcast host was Dionne Bensonsmith. The music is Old English, written, performed, and recorded by Flame Emoji. For more podcasts in this and other series relating to children’s mental health, go to mothersonthefrontline.com or subscribe on iTunes, Android, Google Play, or Stitcher.

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