FARAI CHIDEYA, host:
This is NEWS AND NOTES. I'm Farai Chideya.
It's normal for children to run around, scream and sometimes play rough with other kids, crying and throwing temper tantrums are just part of being a kid. But how can you tell if your child's high energy levels or rambunctious nature is a problem? Is the behavior just part of growing up or is it a problem that you actually need to get professional help for? Joining us now to talk about dealing with mental health issues with children, is Cassandra Joubert. She is the author of "Losing Control: Loving a Black Child With Bipolar Disorder". She has a daughter who is now in her twenties with bipolar disorder. Also later in the conversation we're going to bring in Dr. Johnny Williamson, a child adolescent psychiatrist who works at the Community Mental Health Council in Chicago. Cassandra, thanks for coming on.
Ms. CASSANDRA JOUBERT (Author, "Losing Control: Loving a Black Child With Bipolar Disorder"): Hello Farai, thank you.
CHIDEYA: So tell us a little bit about your daughter Maya and what she was like as a baby and a toddler.
Ms. JOUBERT: Well from early on, it just seemed that she over reacted to very normal life events. Like if you know, a child stepped on her toes, she'd cry for 10 or 15 minutes. She really disliked loud noises. I couldn't have her in the snugly on my belly while I was cooking in the kitchen because she didn't like the clanging of the pots and pans. And those things didn't really seemed terribly unusual, you know, for a very young child. But as she got older, those very minor sort of aggravations really escalated for her.
CHIDEYA: When did you decide that you really had to make things happen in terms of actually getting treatment for her?
Ms. JOUBERT: Well when she got to first grade, her teacher basically said, you know, I think something is going on here and we need to have her evaluated. So a developmental psychologist came into the classroom and observed her over a couple of days and really couldn't come to any conclusions about what might be going on but thought, well maybe she has hyperactivity. Maybe we should try her on Ritalin. And so that was the first indication and the first step towards treatment. And then it wasn't until she got to middle school that she had been kicked out of her school for threatening a child. She had become very depressed and even suicidal, getting into a lot of conflicts and fights. And…
CHIDEYA: Let me ask you something though. I'm sorry to interrupt, but -
Ms. JOUBERT: Sure.
CHIDEYA: When you say suicidal, she was in middle school when she was suicidal?
Ms. JOUBERT: Yes. When she was in eight grade, she started talking about wanting to kill herself and just being very sad. And at that point, we had already started to try her on an antidepressant. She was on Zoloft. And that, in fact, we now know in retrospect, that may have actually made her worse.
CHIDEYA: From what I understand about the science, that giving anti-depressants to people who are bipolar can put them into dangerous highs and it's not the same medication that you would give if you knew that there was a diagnosis of bipolar. Is that the kind of thing that you had to find out, unfortunately, by trial and error?
Ms. JOUBERT: Absolutely because the doctors were so inconclusive. I mean they would say, well we could try her on a mood stabilizer and see how it works out. But what I was noticing is that she was on the phone all the time. She was talking all the time. She was revved up all the time. And that really happened both as she was on the Zoloft and as she reached puberty. Because apparently, you know, hormonal issues also complicate this whole picture.
CHIDEYA: We're going to bring in Dr. Williamson in a second. But if you had to describe her just - her likes, her wants you know, as a person, because we've been talking about some of the challenges she faced. But you know, I'm sure that you have so much love for her on so many levels…
Ms. JOUBERT: Right.
CHIDEYA: What do you find about her personality and her approach to life that makes her special?
Ms. JOUBERT: Well, I mean she is amazingly artistic. She is extremely bright. She has a real deep compassion for sort of the underdog. I mean from a very young age she really liked to work with kids that had developmental disabilities. I mean she just had, she loved animals. She's just got this amazing love for people that we may normally not, you know, maybe we might consider sometimes hard to love. I mean she is amazingly compassionate. And that made it easy for me to hang in with her and say we're going o get this fixed.
CHIDEYA: Now I want to talk to you a little bit more later about why you decided to write the book and of course more about your daughter. But I want to bring in Dr. Williamson. You are a psychiatrist who specifically deals with children in the African-American community in Chicago. When you're listening to Cassandra talk about her daughter, it sounds like Cassandra made some extremely strategic choices about the treatment that she got for her daughter. But nonetheless there were a lot of struggles. Not every parent is going to have those resources of being persistent. How do you intervene in the work that you do and try to find resources for parents and children?
Dr. JOHNNY WILLIAMSON (Psychiatrist, Community Mental Health Council, Chicago): Well one of the most important things I think, are to educate the parent about the behavior that they are seeing from the child and what that may ultimately mean. You know, children when they are developing, their brains are developing, their bodies are changing. They are going through a lot of changes both internally and externally. And so it's not always very clear, initially, or even for a while, what the ultimate outcome will be for a child. And so you'll have a child with irritable behavior or aggressive behavior or acting out and that kind of things.
And three, four, maybe even five years later even with careful scrutiny, you know, some of those children will clearly have a bipolar disorder. Some of those kids will have ADHD or even other potential combinations. And so the symptom expression is not as clear-cut or at least we are not as clearly able to recognize them for what they are in children as we are with adults.
So what she describes sounds like that she was very, very careful about monitoring her daughter and participated in treatment and was able to with time, decipher with the help of the physicians and other treatment personnel to get a clear idea on what was happening.
CHIDEYA: So if you are a parent and you — I mean kids are almost by nature, irrationally exuberant and sometimes that's fun and sometimes when you're tired it's not so fun. What's the difference between a kid who's just had a little bit too much sugar and someone who has a serious issue that you need to deal with? How do you recognize those signs?
Dr. WILLIAMSON: You know on the surface, the description of them aren't different at all but it's not hard to tell, most of the time it has to do with how pervasive and how long. It's never ending. A good example or a good way to tell is to compare them to other children that are the same gender of that age and you'll see that these other children tire of them or other children you know, this is part of what the significant impact of it is on their social aspects. And so other children become angry or are unwilling to play with them, don't want to come over or spend time with them or interact with them at school because they find them difficult.
It's the behaviors that you'll see in any other child at that age, but they are there at such a level of severity and frequency that that's where it starts to stand out and negatively impact their functioning.
CHIDEYA: Now doctors started prescribing Ritalin in the 1960s for kids who were hyperactive. But there's so many different issues that potentially can affect children. What are a couple of the major ones and what are the most common medications that are now being used to treat them?
Dr. WILLIAMSON: Well Ritalin, actually the medication that's in Ritalin is one of the most commonly used medicine in children. It actually is largely effective. You know, we've got over seventy some years of experience in treating kids with that particular medication, so much so that the companies have actually gone to patenting long-acting versions of it and then stamping it with another name. So that's probably the actually most common medication.
And the other point of interest here is that you know, the stimulus, that category medication and even most of the anti-depressant medications, the wide majority of those are actually written by primary care doctors, largely because of the huge need and maybe some level under referral and lack of availability for mental health services.
CHIDEYA: In case you are just tuning in, we are talking about mental health issues in children. This is NPR's NEWS AND NOTES. I'm Farai Chideya. We are hearing from Dr. Johnny Williamson, a child and adolescent psychiatrist who works at the Community Mental Health Council in Chicago. We've also got Cassandra Joubert, the author of "Losing Control: Loving a Black Child With Bipolar Disorder." Cassandra, when did you decide that you had to write a book about this? Your daughter is now 20 or in her 20s. But when was it that you decided that because of the long road that you'd walk, you had to write a book?
Ms. JOUBERT: Well it didn't really start out as a book. It started out as just journaling to try to make sense of all the bizarre sort of things that I was having to deal with and then a colleague of mine actually said to me, you've got to get this out to the African-American community. You've got to do this, you've got to do this because this - it was all so new to me, even as a person that had - knew a little bit about child development. It was just so shocking, the issues I was facing.
So I was encouraged by her to get the book out there, and that's really how it happened.
CHIDEYA: What kind of responses do you get from parents who've read your book?
Ms. JOUBERT: I've gotten amazing responses. The biggest, I guess, satisfaction that I get is that they tell me that they have questions about their kids' behavior and they've not been sure how to address it, and now this gives them at least a way to have a conversation with a primary care physician or a psychologist about what might be going on, and it's also opened up conversation within my own family about other people in the family that have had signs of mental illness that we never talked about.
So it's been very rewarding just to hear people say, thanks for opening up this conversation, and now I feel like I have something that I can maybe use to get help.
CHIDEYA: Dr. Williamson, we've been talking - this is a month-long series we're doing on mental health in the African-American community, and one of the questions that comes up again and again is willingness and access, willingness to admit that there's a problem, whether it's with you, a friend, family, co-worker or just with your community; and then access to medical care that is top-notch.
How do you make sure, if you're not somebody of means, that you can both have the strength to go forward and get help for someone in your family and then also to find the right person?
Dr. WILLIAMSON: Well you know, I think that's a very important issue, I mean, the mental-health disparities for the ethnic minority populations, including African-Americans, is large.
You know, there's much less access to quality mental health care, whether it's under-insurance or under-utilization of services, not knowing where to go or not even recognizing that an illness is present, and I think, you know, writing a book, you know, such as this is a great way. I mean, it's a great way for people to get an understanding, get a perspective.
I think there are national organizations, you know, NAMI is an organization that is a pro-consumer organization that's very well-equipped to provide information for families. One of the most important ways is just personal referral.
I mean, that would require people to have an open-ended conversation, and then we start to talk about things regarding stigma and being concerned about how you'll be perceived, but it's often a conversation that once it's open, flourishes, and you can really get a clear idea of where you may be able to go.
CHIDEYA: What about over-medication. There have been a lot of critiques. We mentioned Ritalin specifically. There have been a lot of critiques that it's easier to dispense a pill than to deal with underlying issues, and of course it doesn't have to be either/or. You can deal with underlying issues in many ways and then also use medication, but at the same time, do you worry that some kids are being over-medicated?
Let me put it in a specific context. There's so much - there's a disproportionate number of black kids, particularly black boys, who get expelled from school or disciplined for their behavior, and sometimes there's a stipulation okay, well, if only your kid was on Ritalin, if only your kid was on medication, then everything would be okay. How do you enter into a conversation if you've been told that as a parent?
Dr. WILLIAMSON: Well that's a very difficult conversation to have, I'll say, because that's a misconception. Because a kid may have one particular behavior over another doesn't mean any particular medication or treatment is going to be the thing that they need. But I will also say that, you know, opposite of that is the truth that in the African-American population, ADHD is actually under-treated across the board.
Now sure, there are potential - there is potential for misuse, but the truth is that there are more children, untreated children, with these types of disorders in the African-American community than many others.
CHIDEYA: So when you say ADHD, it's one of the newer terms for, you know, what used to be called hyperactivity. I mean, it's hard sometimes to keep up with all the lingo because didn't ADHD used to be ADD?
Dr. WILLIAMSON: It did, it did. The nomenclature has changed, maybe about four or five major revisions, but ADHD is Attention Deficit Hyperactivity Disorder. But yes, hyperactivity.
CHIDEYA: Now Cassandra, how has your daughter fared as she's entered adulthood?
Ms. JOUBERT: Well, it's been more difficult since she left high school because she doesn't have the structure and the supports that she had in public school. She's had a rough couple of years.
She's now 20. She's had some run-ins with the criminal justice system. She had a significant substance-use problem, but we've now gotten her on I think a road to real health. She's working 27 hours a week. She is taking a class at community college. She's on a new medication as of December that seems to really be lifting her mood considerably, and she's been substance-free now for almost a year. So it's been a rough struggle, but she's doing pretty well right now.
CHIDEYA: It must make you feel great, but also I wonder if there's a sense of sadness that - do you ever think, well, I wish it was easier for her or I wish it was easier for all of us?
Ms. JOUBERT: You know, that is certainly true. I mean, I have grieved over this illness with my child since she reached puberty, and I really didn't understand what was going on. But I think she and I have both latched on to the idea that we can give something to society by sharing our story, and it's really been very healing for her to talk about this very openly. And I think it's made a huge difference in just her own self-esteem, just being able to share with others and hear them say wow, Mia, you know, you're doing a great job by sharing your story. You're going to help a lot of people. So that's the upside of it.
CHIDEYA: Well Cassandra, Dr. Williamson, really appreciate talking to you. Thank you.
Ms. JOUBERT: Thank you, Farai.
CHIDEYA: We've been speaking with Cassandra Joubert, the author of "Losing Control: Loving a Black Child with Bipolar Disorder," and Dr. Johnny Williamson, a child and adolescent psychiatrist who works at the Community Mental Health Council in Chicago.
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