Find Your Voice: Advocating for your kids

Dr. Jayne Singer: I remember Kendra, once a while ago, being at Children’s Hospital in a clinical situation, in an evaluation. And I met with the mom first before meeting with the little boy. But the little boy had come with a whole packet of referral information. And you know, and I let the mom know, I said thank you for, you know, sharing all of that information. I’ve read through everything else, I said, and rather than go through all of the history. I said to her, in your heart of hearts, what do you think is going on? And I’ll never forget this, cuz she just kind of like put her hands down in her lap. And she said, no one has asked me, no one has ever asked me that. And I remember thinking what is wrong with our system? Like, yeah, who is gonna know better what might be going on with their child than the child’s parent?

Kendra: There’s a lot to think about in that one small story from veteran clinical psychologist, Jayne Singer in one very important way. It’s a story about how difficult it is to speak up and advocate for your child in a system that more often, tells you to be quiet. This is A Little Easier. I’m Kendra Wilde. In this episode, Finding your Voice, renowned psychiatrist and neuroscientist. Dr. Bruce Perry says there are good reasons why it might seem impossible to deal with many of the systems we encounter. 

Dr. Bruce Perry: I think part of the dilemma is that there’s a pressure in systems to have a one- size-fits-all solution, that in their braids, sort of in the system;s thinking capability is manageable and exportable. And so it’s a little bit like being a parent, right? It’s very hard to parent your kids differentially, right? Because you have to be prepared to explain to the other kids why this child is getting a different, you know, set of opportunities or having different consequences… But imagine having 236 million people that you’re trying to come up with standardized rules and regulations and approaches. And you just can’t. And that’s the problem. Yeah. 

Kendra: Professionals might have all the right credentials, but you are the expert on your child. And so there’s often a clash between parents who are desperately seeking services, and a system that’s not set up to spend the time to see their individual needs. Pediatric neuropsychologist, Dr. Rita Eichenstein says this can lead to some really unfortunate attitudes. 

Dr. Rita Eichenstein: Those parents, that all the professionals love to blame. Frantic. Overprotective. Difficult. Argumentative. Uh, you know, I can’t tell you the amount of eye rolling that goes on. So wrong. Parents are frantic because they love their child and their Geiger counter says, something’s wrong, no one’s validating me.

Felimon: It’s not easy. Like no one tells you that, oh, all of a sudden you’re gonna have kids with special needs. And then you’re also gonna have to be able to speak up for them and speak up for yourself. 

Kendra: Felimon and his wife are raising twins who have complex physical disabilities along with developmental delays. He says at the most basic level, speaking up means making sure your kids’ medical and therapeutic needs are met. 

Felimon: That translates into going into a doctor’s office at any point in time and relaying your son or your daughter’s information, advocating for them or whatever their care needs are. I guess that was impetus to get me to here. Um, if I wanna call myself an advocate, I think I’m an advocate for my family and that’s how I think about it. 

Kendra: But over the years, advocating for his family has meant finding his voice in other places besides the doctor’s office. He says the first request came from his wife. 

Felimon: She said, can you please go to a PTO meeting and talk about bringing to attention generalized services for kids with special needs? And it was around that, you know, it wasn’t a very high pressure situation at all. It was just a PTO meeting at the high school. I played. I performed music when I was a kid, and I performed speech and debate, but I even then, you know, and I got in front of this PTO and I stood up and I was voice cracking. I was nervous. I was sweating. But I realized then, you know, that’s not a good place to be. If I’m trying to really get people to pay attention to me, or pay attention to things I have to say. It’s more about being kind of, um, not this emotional wreck where you kinda can talk to somebody clearly and concisely. And make your point. 

Kendra: After that first nervous PTO meeting, Felimon realized he had to find a balance between emotions and advocacy. 

Felimon: At the time Olympia, Washington, where I live didn’t have a dedicated father’s group, but I tried to run a father’s group myself at the time. And it was, I was not in a good place to even… I mean, luckily I did it for a few months, but I was not in a good place to continue it because our kids were so young. And we were just starting this process, especially with the epilepsy diagnosis and getting that figured out. I had no business leading a group. That was really my first experience. And then a couple of years later, I then I went to the father’s network conference. So I was actually a big ball of nerves. I was, I was really quiet. I was just watching everybody. I didn’t know any of the other dads, a lot of older men, they are talking and chatting and I just sat there and was like, what is going on? But it was a really insightful conference. It was really emotional, um, because there’s usually two or three men that tell their story. And you know, that’s before things really get going for the day. And then you go break out for your little breakout sessions or whatever. And when those first few stories happened, it was just, I mean, I think I, we were all gonna have lunch together. I went ahead and had lunch. I got in my car and had lunch that way. I just could not be there. And it was just that intense.

Kendra: The stories that Felimon heard the other dads telling, those are like training sessions in themselves. Like an elevator pitch for parents. When you move through the medical system or the school system, you find yourself having to sit with professionals and tell your story over and over and over again. And the way you tell it matters. You have to summon just enough emotion to be convincing and moving, but never so much that the therapist or doctor or teacher can dismiss you as crazy. That eye-rolling reaction that Dr. Rita Eichenstein was describing. Felimon says, even though that first father’s conference was an intense emotional experience, it became a turning point for him. He went again the following year.

Felimon: And now, you know, we have our own chapter, and that’s been something that, That just that’s been a year. We have our own like, kinda little chapter growing. And if anything else I’m kind of floored because I just realized that I needed to kind of change my life overall. I needed to slow down. I needed to meet and talk to more dads that are in my situation. I need to fold into my own family here in Washington, a little more. Maybe model some of the older dads. Because I was really impressed. That was the part that really impressed me, especially with the older fathers and it showed me that there was a kind of a light at the end of the tunnel.

Dr. Christopher Willard: There’s many paths to choose, that’s important, too. 

Kendra: Psychologist, Dr. Christopher Willard reminds us that there are a lot of different ways into advocacy and finding your own voice. 

Dr. Christopher Willard: You don’t have to be like the hero dad to the, you know, to the high needs kid, like in some kind of public way. It can be, you know, in much more quiet ways. And you can appreciate different things about him and not have it be the center of your life. But also not have it be something you pretend isn’t there either. It can, it can find its size in your life. 

Elizabeth Bostic: I grew up in a family where advocacy was a given. 

Kendra: For others, that high profile vocal route is the one they’ll take from the beginning. 

Elizabeth Bostic: And, and a lot of that has to do with being African-American, growing up with parents who were part of the civil rights movement. And so in many ways, even before I had a child with special needs, I already knew I was gonna have to advocate. They’re children of color.

Kendra: Elizabeth Bostic is a special education advocate and parent consultant. 

Elizabeth Bostic: We moved out to Medfield, Massachusetts. We were the only black family out there. We always knew when another one came, cause everyone was so excited. Like there’s another black family in our town. And I was like, see how long they last here. But I, we moved there when I was in second grade and the teacher assumed that I needed to be in the lowest reading group. And I remember my dad, who was six foot three, this tall black man who would show up at the school. And it was like, word got back to me. My dad was in the building again, you know, because he was like, she’s not stupid. Put her in the top reading class. 

Kendra: Those lessons in advocacy that she learned from her father were touchstones she held to as she had her own kids. 

Elizabeth Bostic: So I am the proud parent of two children. And, you know, I have a daughter Marisa and, after her seventh birthday and her many, many, many beggings for a younger brother or sister, we had James. James was born perfectly healthy. And then 10 days after, became severely disabled because of jaundice. And jaundice, few people know that if it’s not taken care of appropriately, can actually cause brain damage. And so as a result, his perfectly healthy little boy became nonverbal, non ambulatory, G-tube fed and hearing impaired. And it was a whole different world. We suddenly had to deal with 14 different specialists. We suddenly had to deal with medical equipment, and medications, and all of these different things and trying to figure out how in the world do we take care of this little boy?

Kendra: Because her son had a whole spectrum of needs, Beth faced advocating everywhere. In the medical world and in the educational system.

Elizabeth Bostic: When I had my son, I had some basic assumptions about how special education could work based on what I knew about education. And what I didn’t understand at the time, was I was actually completely accurate. Because special education law was built on civil rights law. It was very similar in the precedents. And so everything that I had learned was immediately applicable to what I did with my son. 

Kendra: Some of the inequities in the system were brought home to her when James was a teenager. had a medical crisis after a routine surgery that went wrong. 

Elizabeth Bostic: So, uh, what started out as a procedure that was normally in and out in a day or two extended to 15 and a half consecutive months in three different hospitals, over two different states.

Kendra: She sought treatment for her son with a technique that’s called deep brain stimulation or DBS. 

Elizabeth Bostic: And it had been used for another child who had the same condition that he had. Was very successful. And I asked doctors here in Boston if we could do it. And they said, we don’t think he’s a good candidate because his condition was secondary to another. And so that was really frustrating. And so I started looking around and found Gillette Children’s specialty hospital in, um, St. Paul, Minnesota. And they literally, within a day said, yes, we’ll take him. 

Kendra: But then she had to fight with her insurance company. They considered Beth’s request to cover the procedure and denied it – twice.

Elizabeth Bostic: And I remember sitting at the second denial, cuz usually that’s the end of the road and I went, there’s got to be a way. And then thankfully, because of the Affordable Care Act, you can get an independent review organization, an IRO to look at your case. And there was the possibility that they could overturn the insurance company’s decision. So I worked with a doctor to do that, and it took us some time, but we were able to get the decision overturned. So James was med flighted out to, St. Paul, Minnesota. This is 10 months into our journey.

Kendra: The experience with the hospitals, the insurance company, and the medical complexity of her son’s case, had her thinking about what it would be like for other parents in the same situation without some of the advantages that she had. 

Elizabeth Bostic: Okay. I speak English. I had private insurance. Right. I mean, you couldn’t even use language barriers or immigration status or any of that with me. I know how to navigate. I know how to negotiate. I’m fairly, you know, articulate, and it took me so long to get that for my child. The other thing I learned along the way was there was another child also with this exact same condition, exact same age who, when they had this problem, was able to access the very surgery that I wanted in Boston within six weeks of their trauma. And James was not able to get it. And that was one of the first times where racial equity became an issue. In that moment, things changed for me. Cause I said, no, I need to focus more of my attention on healthcare advocacy and health equity, because this can’t happen to another child. 

Kendra: After James’s successful surgery, Beth was able to get him placed into a new school. 

Elizabeth Bostic: It was that, the new school, who had no pre-con conceived notions of James. And they said, Hey, you know, why don’t we try a communication device with him. And that’s when we discovered that the DBS not only controlled his spasming, but gave him the ability to use his eyes effectively. And for the first time he could use an eye gaze controlled device to communicat. Oh. Mind blowing. And suddenly everything changed for James. So for the first time at age 19, James was able to tell me he loved me.

Kendra: The systems we have to navigate can be truly Byzantine. And it’s hard enough to do when you have all the advantages in the world. I wanted to find out more about what it might be like if you were an immigrant, let’s say to this country, someone whose first language isn’t English.

Oanh: A big giant room with many specialists, all professional. I think at that time, could be like 10 of them. And I’m all by myself. 

Kendra: This is Oanh. She’s originally from Vietnam and came to the US as a grad student. She’s describing the very first school meeting she had about her daughter, Tiny, to sign off on her individualized education plan, or IEP.

Oanh: All right, this is the first IEP meeting. We’re going to talk about your child. We’re going to go over all the evaluation and blah, blah, blah, to determine whether or not your child is eligible and all of this, everything in English. So in my mind, like, alright, okay. I’m just trying to like, digest, and trying to like figure it out. Nobody told me at all about whether or not I can have access to all my materials in Vietnamese so I can read it. Because it’s all jargon, as you can imagine. I have no idea. 20 pages only in English in the IEP. 

Kendra: Well, I, yeah, I mean, I grew up, English is my primary language and I remember in my IEP meeting, not knowing what they were talking about either. They have all these, it’s not just acronyms, it’s terms that are used in a really weird way, even in English.

Oanh: Right, right. But believe it or not, the team asked me right there after IEP meeting with all of this experience that I’m trying to process, you need to sign off your IEP right there and then if you want your daughter to receive the services. 

Kendra: You didn’t know that you had the right to so much more before you had to put your signature on that paper. And now that you signed it, they’re done. 

Oanh: They done deal. Right. 

Kendra: Oanh came to the US to study international development. Tiny has complex developmental differences. Oanh knew that one of the most crucial services she wanted for her daughter was a consultation with a speech pathologist. 

Oanh: Because by the time she started school, she’s already five years and a half. Zero words cannot communicate. Nothing at all.

Kendra: She believed that some of Tiny’s challenging behaviors were because of her frustration at trying to communicate.

Oanh: The speech pathologist, straight into my face and say, you need to stop speaking Vietnamese to her because first of all, she’s nonverbal. Secondly, you are now in the US. English should be her main language.

Kendra: Oanh could not believe what she was hearing. She knew Tiny’s problems weren’t related to language confusion. 

Oanh: I’m like really froze myself, like, alright, I just can’t. But I mean, I’m just, stay calm as much as possible. Because what I have in my head is I need her to share the resources so that I can teach her at home. And then my second question could be like, can you share with me like some materials, or can you teach me how I can teach Tiny so that she can communicate with me? If I don’t speak Vietnamese to her what do I do? How can I do? 

Kendra: But the pathologist’s response was not what she was hoping for. 

Oanh: You know what, it took me four years to become a speech pathologist. And now you want me to teach you to become a speech pathologist? What? Straight in front of me. It’s like, oh my God, what do I do? I’m just like, all right, that’s it. Finish the meeting, have no idea how to process, trying to write it all out, asking some of my friends, some of the other parents, like it’s not right. How does it happen? How could you like, like how could they treat you this way? 

Kendra: The experience launched Oanh on a journey, not just to find more support for Tiny, but also to figure out how to advocate for herself in this complicated system. 

Oanh: I learned so much like, oh my God, I have so many rights here that I’m not aware of.

I mean, all of that, and it’s a struggle for me to really kind of figure that out. But over time, I just feel that if I don’t stand up, if I don’t speak. up she would not be able to receive the services that she’s entitled to.

Kendra: I was just thinking, you did a film. And I feel almost like I’ve lived your life now because I watched it. 

Randi Silverman: Oh, thank you.  

Kendra: What drove you to make a film about your story? 

Randi Silverman: It’s so unusual. I mean, it’s such an, I think it’s an interesting story. Of course I, think it is. I always joke. I’m not a filmmaker, but apparently I am because I actually made a film. I pinch myself to be honest. So my film is called No Letting Go, which by the way, you can see on Amazon, it’s free if you have Prime. 

Kendra: We heard from Randi Silverman way back in our first episode, when we talked about the difficulty of deciding how much to disclose about your children’s struggles. The mental health issues started very young for her middle son.

Randi Silverman: We started to become aware that he had an anxiety disorder and we put him into treatment for his anxiety. And then he became very depressed. Um, and ultimately, I mean, he was suicidal when he was nine years old. So he got very ill. Um, he was ultimately diagnosed with bipolar disorder and, and it was a really painfully difficult journey. Um, and it was very isolating, very scary. We, you know, lost a lot of friends who didn’t understand. And when your child is in pain, I mean like any parent out there listening, there’s nothing worse than your child who’s in pain. 

Kendra: Did it have to escalate to that really desperate point before you really got a chance to, to learn what was going on?

Randi Silverman: You know, it was, it took us probably seven years from, in retrospect, from the time his symptoms began until he really got the proper diagnosis and we started heading down the right path for treatment. 

Kendra: Making a movie about such a difficult time in your life might be the last thing that most parents would consider. Randi came about it just by chance. And she grabbed it as an opportunity to reach out and help other parents. 

Randi Silverman: I was with a friend who’s a movie producer and she had this new director and wanted to make a movie. And I said, well, I have a story for you. And so I was in the right place at the right time. And I sat down and, and I just started just writing this story, the foundation of the movie was really this, this experience I had. And when I started to realize that there are millions of families out there struggling. One in five kids has a diagnosable mental health condition that they’re struggling with. It’s like 18 million children. Right. It’s huge. And it’s huge. And so I, you know, I really went on this mission to try to make other people’s lives easier. You know, everything that you saw in the movie in some fashion, either, either we, we experienced or, you know, I’ve seen other families just like mine experience. And it was meant to let people know they’re not alone. And to give people who haven’t struggled with this kind of thing a better understanding.

Kendra: One of Randi’s most important messages is that mental health problems need much more awareness and much earlier treatment. And that means dealing with the stigma. 

Randi Silverman: The earlier you intervene, the better. The better your chances are of success and recovery, the earlier you intervene. But if we’re, we as a society are always in crisis intervention. You know, we wait till the kids drop out of college or are addicted to drugs or are, you know, doing really dangerous things. And then we think, okay, now it’s crisis intervention time and, and it’s too late. It, you know, it’s not, hopefully it’s not always too late, but we’re losing our children. We’re losing our children to suicide. We’re losing our children to jail. I mean, you know, all because of untreated mental health conditions. And unrecognized, mental health conditions. Suicide’s the second leading cause of death in ages 10 to 24. We don’t understand it the way we need to understand it. 

Kendra: The movie is just one way that Randi learned to advocate around mental health. It started with screenings and discussions, and that led to her starting a nonprofit called the Youth Mental Health Project. We talked last time about the importance of finding your village. Sometimes advocacy can mean creating your own community. 

Randi Silverman: I think one of the most essential things that helped me actually was finding other parents to turn to. We learn the most from other parents. We learn everything from other parents, you know, what’s the best camp, the best babysitter, which orthopedist do you like? Um, but how do you find other parents who are willing to raise their hand and admit that their nine year old is suicidal? I mean, yeah, it’s hard to find those parents. We actually started a program called the parent support network. So you’re sitting in a room. It’s the most magical thing. And it, by far is the number one thing that helped me. Sitting in a room with other parents who get it, who are not judging you. The parents will come in and say, well, I’m so embarrassed to tell you this story. And they’re, my son, you know, punched a hole in the wall. And then, you know, half the room raises their hand, yeah, that happened in my house too. I mean, that’s, that’s just, I’m not saying every kid punches all in the wall. I’m just saying you’re like, yeah, nothing shocks you when you have a child who’s struggling, and you’re like, yeah okay. So it’s comforting to know you’re not alone and it’s not just you. And I tell parents, well, you are not alone. I used to think I know the statistics, but where are all these parents? 

Kendra: Right? There’s millions of us. Why aren’t you coming outta the closet? 

Randi Silverman: Where are they? We’re all hiding. We’re all hiding, which we’re hiding because of the stigma and the shame and the embarrassment and the blame and all of that stuff. But if we could get together, we empower each other. We provide each other with resources, with knowledge and, that’s how I think the best thing I ever did was finding other parents out there that I could talk to.

Kendra: Next time on A Little Easier in the last episode of the season, we’ll look into the future and talk about how the challenges around parenting can help us grow and change. 

Devon: I don’t think I’ll ever reach the end of the tunnel, but I feel like I have a flashlight, and I don’t feel lost in there.

Kendra: But let’s not forget our micro action moment. This time it comes from Dr. Nicole Beurkens, who reminds us to dwell on the positive moments.

Dr. Nicole Beurkens: If you’re feeling like you don’t have a lot of reasons to be hopeful. I wanna encourage you to find something within yourself that you can hold onto that helps you retain some hope, even if it’s just looking at your child, um, each night when they’re sleeping and they’re, and they’re calm, or when they’re doing something they really love, or you’re having a moment with them. Hold on to that. Encode that in your mind. Take a little mental snapshot of that and let that be the thing that continues to move you forward and fuels that sense of hope because there might be some amazing, you know, shift or opportunity or something right around the corner.

I’m Kendra Wilde. And this has been A Little Easier. The show that was created to help you find more joy and resilience when parenting is extra challenging. Thank you so much for being here. Make sure you’re subscribed to A Little Easier in your podcast app so you don’t miss an episode. And while you’re there, please take a moment to rate and review the podcast, share it with family and friends. 

We’re an independent show focused on elevating parents, because you’re the most important force behind your child’s wellbeing. Visit ALittleEasier.org for show notes and discussion questions. Plus resources on parental burnout and resilience building.

A Little Easier is written by Harriet Jones and co-produced by Harriet and Rae Kantrowitz. Sound design and original music by Rae. This podcast is brought to you by Wild Peace for Parents and me, Kendra Wilde.