In this episode, we listen to a mother of three children with mental health diagnoses who works as a Family Partner with North Carolina Families United. She discusses the barriers families face when trying to get their children services and her own experience of moving her family to another county in order to get mental health services for her child.

Transcription

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Female Speaker: Mothers On The Frontline is a non-profit organization, founded by mothers of children with mental illness. We are dedicated to storytelling as a method of both children’s mental health advocacy and caregiver healing. Our podcasts consist of interviews of caregivers by caregivers out in the community. This results in less polished production quality but more intimate conversations rarely available to the public.

Caregivers determine how they are introduced, and the stories they share. We bring these personal experiences to you with the aim of reducing stigma, increasing understanding, and helping policymakers recognize and solve the real unmet needs of families dealing with America’s current children’s mental health crisis.

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Welcome to the ‘Just Ask Mom’ Podcast, where mothers share their experiences of raising children with mental illness. ‘Just Ask Mom’ is a ‘Mothers On The Frontline’ production. Today, we will speak with a mother of three children with mental health diagnoses. She works as a family partner in North Carolina, with North Carolina Families United.

Tammy Nyden:  Well, hello. I’m just going to ask you to tell us a little bit about yourself, either before or outside of mothering, what are your passions? What do you love to do?

Mother:  Family time. I love family time. I like spending time with my immediate family, like my at home family and my extended family. So family values mean a lot. My husband race, so we do go to the race track a lot because he race motorcycles. And sports. Because my kids do basketball, and soccer, and volleyball. They compete each year, and I used to run, so sports activities is things that I like to do. 

Tammy:  Well, that sounds like fun. Like a lot of fun in the house.

Mother:  Yes. Staying busy. 

Tammy:  Staying really busy. That’s really cool.

Mother:  Stay very busy.

Tammy:  The racing would scare me a little bit.

Mother:  It does. I don’t like for him to race if I’m not there, but I’m used to the race track. My uncle used to own a race track. My cousins race cars, so that’s something that I grew up with.

Tammy:  So you’re used to it.

Mother:  So it’s kind of you know, the fact that we met, and that’s his thing, and I grew up with it, so it’s something that we had in common. But, yeah, it bothers me if I’m not there.

Tammy:  It sounds exciting too, though.

Mother:  Yeah. It is. It’s an adrenaline high, basically, yeah. 

Tammy:  Absolutely. Yeah. Cool. So, I want you to pretend that you’re talking to elected officials. What do you want them to know about your experience? What do you want them to understand?

Mother:  It would be the difficult things that families go through to get services. That when they choose to cut funding in certain areas, how it affect families, especially families in rural areas. How hard that families and children fight for services. How they can be overlooked and/or mistreated because the service that they need is not available to them. To probably take themselves out of the equation when they’re making these decisions because they may or may not have had to experience the things that we have had to experience. So how could you make a judgment or make a decision based off of data? Because data doesn’t tell it all. Stories can tell you some things but data can only give you numbers, and numbers is not a good way of determining whether or not it’s beneficial for one particular area.

Tammy:  Can you think about certain things that you’ve seen that have been cut or not cut or just programming that you could have used that weren’t available?

Mother:  I mean, no, ’cause so my son is now seventeen, and we started this journey back when he was five weeks, basically. And when his diagnosis came into play and I actually moved from county to county to get services. And so I’m from a smaller county in North Carolina but then I moved to an even smaller county in North Carolina to get better services.

Tammy:  Really? 

Mother:  But I feel like I should not have had to uproot my family to go somewhere else to get services. And I stayed there for a while, and I mean because of the problems he was having, I owned my business and couldn’t run my own business. I had to be a stay at home mom because there were not people that could take care of him. Or the doctors didn’t feel comfortable with him going to a daycare, not even to my own if I couldn’t be in the room the whole time.

Tammy:  That’s a lot of pressure on you too.

Mother:  Yes. It is. So I became a stay-at-home mom when I really wasn’t ready to be a stay-at-home mom. And then that fact that you have people, I mean like the agencies that I was working with in the smaller country, they told me, “When you go back home, you’re not going to get these services.” Now, not to say that the services are not available, but you’re not going to get these services. And it is because of the fact that these agencies/organizations or governmental agencies have to right to hold onto funds, and if those funds are not used within a certain time frame at the end of the book fiscal year, they can use it however they see fit.

So if it’s something, they won’t really get money for something else, then they can say it’s not available and/or needed for our children, and hold onto it, but then they can spend it somewhere else.

Tammy: So they’re motivated? There’s–

Mother:  You’re right. Right. So now in North Carolina, they are trying to pass a Bill where it’s going to prevent them from doing that, but that’s a process, but that’s now. So what’s going to say that when it’s time for this Bill to go through that the elected officials are still in play?

Tammy:  Right.

Mother:  If they’re gone, then we got to start all over again. So I mean, even though it’s uncomfortable, I mean, my daughter was in school so I had to uproot her to go somewhere else just so her little brother can get services. And then you know, you have families that they may make a dollar too much and they can’t get Medicaid. I feel like that these private sector insurance companies need to understand the importance of services. And I feel like if the government can make the insurance companies do so much as far as you know, the Affordable Care Act and all of that, then you need to have them to implement or demand that they do mental health services or IDD Services. Something, because these kids should not be without as well. The only way you can get services for your child like that if you deem your child a risk to society and then they would give them residential Medicaid for the time frame that they need to be put away to get the services to make them successful in the community. And they should be able to be successful in the community, in the community.

Tammy: Well here is the question. And we’re in different states, so I know it varies state to state, but even if they have residential and they come home if there are no community services…

Mother:  Then they go home.

Tammy:  …they’re starting all over again.

Mother:  They’re starting all over again.

Tammy: They’re starting over again

Mother: Uh-hmm. And I think that requires a lot of advocacy work. Like my job, I’m a family partner so I advocate for the families in North Carolina. So who I work for is the state chapter for North Carolina. The family-ran state chapter. So we take care of all of North Carolina. So I advocate for those services. I attend these school meetings and these DSS meetings, and everything to make sure that the families voice is heard and that the families get what they need. I sit on Care Review because I’m going to be that voice that’s going to keep that child out of residential. They try to implement those services in the community and we stress the importance of giving that family a wrap-around service. Give them a family partner, get that youth a youth partner. Somebody that has been there, done that. That could help guide them through the community to help them be successful because, in the end, the government’s going to say, “Money”. It’s just getting them there.

Tammy:  Exactly. Exactly.

Mother:  I mean, every time something goes wrong it falls back on mental health.

Tammy:  Yes it does.

Mother: But you take away our money. 

Tammy: What’s so hard too is kids, they’re like anyone else with mental health conditions, physical health conditions and ebbs and flows, and when the kid’s doing better, say, “Oh, you don’t need them anymore”

Mother:  And you know, I see that it’s not that you don’t need it. Maybe you need to be put on maintenance.

Tammy:  Yes. 

Mother:  Put on maintenance. So that means that if my child is doing good, then he or she should not have to go see somebody every week. Put them on maintenance, but don’t say that if he has a flare up thirty days later, that we have to go back through that assessment program all over again.

Tammy:  And start from the beginning.

Mother:  Yes. So to me, that’s not fair, because nobody wants to have to continue to have to tell their story to somebody strange, over and over again. And it’s pertinent if you get them young, put the money where your mouth is, that you don’t have to worry about these older people. So I really feel like … Sometimes when we’re voting or when we choose not to vote, there’s a consequence to everything. But just because they’re in your political party, read up on them.

Tammy:  Good point.

Mother:  Because just because they’re Democrat and you’re a Democrat, they’re Republican as you’re Republican, doesn’t mean that they are the perfect fit.

Tammy:  That’s right.

Mother:  Read up on their beliefs.

Tammy:  That’s right.

Mother:  Google them and see what’s been in their family.

Tammy: That’s key, isn’t it?

Mother:  That’s key. That’s how you would know who you need to have around that table.

Tammy:  Because when someone’s gone through this, all of a sudden they see everything so different.

Mother:  It hit close to home. And I’m like that with schools I love my kids to have a teacher that has had to deal with certain situations because then that means they’re going to have empathy when they see something flare up.

Tammy:  That’s right.

Mother:  So you need to think about that when you’re voting in these elected officials.

Tammy: Thank you so much and thank you for the work that you’re doing.

Mother:  Thank you.

Tammy:  It’s such a huge for us moms with… grateful.  So, what I’d like to ask you, is what has been difficult in the past in trying to get help for your child? What has been a stumbling block or challenge?

Mother:  So you know when I was asked that one time before I always thought it was the initial services because it was, but then you get at the same time insurance people don’t feel like, whether it’s Medicaid or private. They don’t feel like kids under a certain age have an issue because it can be age-related. I understand and I get that. I would probably say though, it would have been when my son was in elementary school, and when I first initiated trying to get him tested, as well as a five-o’ four put in place. I think that was really, really difficult and it made me realize how hard it was on families who wasn’t used to advocating for that stuff, because I went in without my own support, because, hey, that’s what I do. I didn’t need support, because I do this for a living, and I walked out of there in tears because I did not get it the first time.

Excuse me. And I was like, “Okay, so this makes no sense. I know this what he’s supposed to get. He is entitled to it. Where did I mess up at?” And I remember going back to work upset about it, and my boss was like, you know, “What’s wrong?” And I went to tell her exactly what had happened, and she said, “And you went by yourself because…?”  That’s what I do. I didn’t think I needed anybody. And she said, “Because as families we go in there with our heart, so we need somebody else to go in there with their mind.”

Tammy:  I love that.

Mother:  So we need our own support

Tammy:  I love that.  

Mother:  She said, “Because you’re not thinking, because that’s your baby.” She says, “You’re not thinking in the professional manner of your scope of your work. You’re thinking about what’s going to help your child,” which they do go hand in hand, but we get a little blindsided, and we let them talk down to us because we’re a family member.” That was the biggest challenge for me and I got so frustrated, I was like, “You know what, I’m going to call this meeting one more time but I’m going to have all my ducks in a row.” And so, me and my husband took our son to the Epilepsy Institute in Winston-Salem, North Carolina and got him tested on our own.

We convinced our pediatrician that he needed it. We went there for like five visits, went through the whole process, and we were right. We went through the accommodations and he deserved it, and that place took us through the whole five-o-four process and had it written out for us, accommodations and all. And all we had to do was go back to school, presented it to them, and it made it so much easier. But it was a place that understood where we were coming from, took the time to listen to our concerns, took the time to work with us and found out what worked for him.

Tammy: What worked well? Think of something that just worked and really helped your kiddo?

Mother:  So he met a… He had a fifth-grade teacher. This was before we were able to get him tested, that called me in one day and she said, “Mother, I’ve noticed something with your son.” And I was like, “What is it?” And she said, “He raises his hand whenever we’re taking a test, and I call him up and I say, ‘Okay, read it to me’, and he’d read the question to me, then he said, ‘Never mind. I got it’, then he’d go back and sit down.” She said he did it over and over again. She said, “I got a little frustrated because I was like, is he playing games with me?” But then she said she thought about it after he went and sat down one last time, and she just looked at him, and she said, “Come here.” And he went back up to her, and she said, “What is it? What’s the difference with you doing it there than you coming to me and reading the questions to me?” He said, “When I read the questions to you, I hear the question, and I understand it.”

Tammy:  Oh.

Mother:  “And so I can actually do the work.” So she actually called the principal to come to her room. So the principal to view what was happening. They excused her to go to Lowe’s Home Improvement up the street. She went and bought a plumbing pipe shaped like a telephone for him, and she gave that to him and stayed at his desk and she told him that whenever he needed to read a question to pull that out and read it into that pipe. And he could hear it, and he never once had to ask her that question ever, ever again. And she told me, she said, “That made me think that something wasn’t clicking, he wasn’t comprehending something.” That’s what made me realize he needed to be tested, but she allowed him to take tests, she allowed him to do things that probably nobody else would have done. And she risked her job to make him at least successful and that was the first time he ever passed in the grade test.

Tammy:  How creative too.

Mother:  That was so creative. And he to this day, he loves her. I mean, he goes back, and like she has now retired, but then she comes back to sub. He’s goes back to see her, and he’s a senior now. He was like, he felt like, had it not been for her, he would have never been successful. And that’s part of his accommodation, is that he has to read his questions out loud to himself.  And so she actually had diagnosed him in her head, so he actually has dyslexia reading comprehension. So anything that he does, if he doesn’t read it out loud to where he can hear it, he doesn’t get it.

Tammy: Right.

Mother:  But that was like, she was like a blessing to us, and it made the process a whole lot easier and to have her to advocate for him, and to risk everything for him, showed me that she cared.

Tammy:  That’s wonderful.

Mother:  I mean, that was a timeframe when we had the problems with shootings in school, and you know… and my husband was like, “Do you ever get concerned?”

Tammy:  Oh yeah.

Mother:  … and I said, “No, because if she went that mile for that, then I know she would do everything in her hands, in her powers to keep him safe and those kids safe.”

Tammy:  That’s right.

Mother:  So she was like a blessing to us.

Tammy:  There’s nothing better than a good teacher, a good doctor. Right?

Mother:  Yes. Yes, yes, yes.

Tammy:  Wonderful. So we’d like to ask this question. Right now, in this moment, because we know it changes constantly in our lives, but in this moment, are you swimming, are you treading water, are you drowning? Where do you feel like you’re at?

Mother:  Not drowning. Maybe I’m swimming. Yeah. I mean, so I guess I would say I’m swimming. I mean, not that we’re probably not getting ready to hit another you know, moment,  because my son’s a senior, so we got to get ready for college, and he does a test wheel, so we have him to do individual face to face visits to get an understanding. He has the GPA but he may not have the test scores. But I mean now, things are a whole lot clearer than they probably have been in a while. So …

Tammy:  And that’s exciting too. Now that’s an exciting time. 

Mother  It is. I mean, too, the fact that he helped me get through the hard times, so now that my eleven-year-old, looks twelve-year-old now is going through her issues of anxiety and stuff, I’m prepared.

Tammy:  Fantastic.

Mother:  So it’s kind of like, I think that’s what really keeps me afloat, is that that’s what’s going to keep me from drowning is the experience that I already have from the past.

Tammy:  It gives you confidence, right. 

Mother:  It does.

Tammy:  It does.

Mother:  It makes me know that…

Tammy:  It really does.

Mother:  …because he’s getting ready to graduate and he has close to a 3.0 GPA at a time when they may have said that he wouldn’t have made it that far. That he has it, that means that I did something right.

Tammy:  Absolutely.

Mother  That my advocacy works.

Tammy: That’s great.

Mother:  Yeah.

Tammy: That’s wonderful. So what is your self-care routine, or more appropriate, survival technique? What do you do to take care of you?

Mother:  I make sure for one, that I don’t take on, I follow the same step of no more than two appointments. If I can manage one I do one. And I never make appointments during school days. If I cannot get an appointment on an early release day or a teacher work day, then they don’t do an appointment. I make that perfectly clear when I start anything as far as my kids are concerned because I don’t feel like being stressed. I don’t want to be running from here to there, and them put in that same situation. And I share the load.

For a while, it was kind of hard for my husband to understand everything, but now he gets it, so we share it. So all the burden doesn’t follow me. So the fact that I have my husband, my partner to be as understanding, maybe not as knowledgeable, but I can send him to an appointment or to a meeting and he’s heard me talk about the things that I do for my job, that he knows what questions to ask. He knows how to take the right notes and what to question them about. Things like that. And that’s probably the easiest survival technique that I have, and I take time too for myself.

At eight o’ clock I shut down. My kids know that’s my time and they know that that’s when they need to be on their own for a couple of hours. So…

Tammy: That’s great. So, we end with this question: What ‘s your most laughable moment? Looking back and your experiences, what makes you smile? What makes you laugh?

Mother: So like my son was the baby in the bubble, from the time he was five weeks with his diagnosis, up until going to kindergarten, he could never go outside and play.

Tammy: Really?

Mother:  So he doesn’t have the experience of playing in the dirt, just going outside to be that rough little boy. He would never play football a day in his life. He’s not allowed to do that. And I remember one day he… we took because my husband used to play great Softball and so we took him to a Softball game and he just wanted to play in the dirt. And I was like you know, and I’ll let him get down behind the pitch because I could see he wants to cheer daddy on.  And he would stand by the fence and he’d be like, “Dad. Dad, I know you hear me”, and he will make everybody start laughing because he just wanted his daddy to just recognize that he was standing there at the fence. And so he sat down behind the fence at the dugout and he just played and played and played, getting dirt all over him.

So it was happy for us because he was never able to do that. but the next day, we get a call, because he was staying with my mom,  and she was like, “You got to come and get Jason and take him to the doctor.”

Tammy:  Oh no.

Mother:  I was like, “What happened?” And she was like, “He looks like Baby New Year.” So I come and get him and his ears literally was the size of Baby New Year.

Tammy:  Oh no.

Mother:  So we get him to the doctor and they did all these tests, and my son’s allergic to everything but the kitten and the dog. Literally. Everything in the world, but a kitten and a dog. That’s the only two things that he can roll up against and it don’t break him out. And so, you know they gave him medicine or whatever and it didn’t really scare me after a while. To me, it was funny because we wanted him to experience that so bad, and he has such a ball out there playing that he didn’t care that his ears was that. When we showed him in the mirror how big his ears had gotten and stuff, and to this day, he still laughs about it. We talk about it and he laughs about it, and he can play sports now. So it’s like, you know, him just getting him out in the world and being able to experience being a kid. He plays basketball, he tried track and softball, but he was just never being able to play football. He gets that, but the fact that he’s becoming. He went from the baby in the bubble to being a regular kid now…

Tammy:  That’s great.

Mother:  He got to experience some tragedies along with some fun times. That’s like my laughable, and probably the most memorable moment was his ears looking like Baby New Year. And then just him being able to play in sports, because it was just so hard getting doctor releases to let him do those things. It was so hard, but the fact that he does it now, and he enjoys it and you know, we get to have the fun with him.

Tammy:  Thank you so much for sharing your story, and especially the last story. Those things help us, moms, because we’re in the middle of it.  Sometimes we never think where we see the other side

Mother:  No, we don’t.

Tammy: So thank you so much.

Mother:  You’re welcome.

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Female Speaker: You have been listening to Just Ask Mom, recorded and copyrighted in 2017 by Mothers On The Frontline. Today’s podcast host was Tammy Nyden. The music is Old English, written and performed and recorded by Flame Emoji.

For more Podcast on this and other series relating to children’s mental health, go to mothersonthefrontline.com 

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