 Hi, welcome to Family Affairs, coming to you live from the Think Tech Hawai'i Studios in Honolulu. I'm your host, Lisa Kimura, here to discuss the issues, policies and initiatives that affect families in Hawai'i and what we can do to help develop healthier communities. With me today are Anne and Ken Yabusaki, heads of the Hawai'i FASD Working Group, to talk about the challenges for families living with these disorders and how various coalitions are working to address the issues and impact. Welcome Anne and Ken. Thank you. Thanks for being here. So, to start out, why don't you tell me a little bit about the FASD Working Group and how you got involved with that? Okay, about three or four, well actually earlier in 2000 I was working with juvenile drug court in Hawai'i as a family therapist and we noticed that there were more and more kids that we couldn't quite understand because of our system, because of who they were I suppose. And it got me curious because usually we help a lot of kids through that court and when there was a few it started to increase and then I saw I started to look into the idea could there be a fetal exposure to alcohol as a possibility and that's why we're not getting the results that we had with the other kids. And so then I began to explore a little bit more about the behaviors that come with fetal alcohol exposure and decided well we need to do something about this because there are more and more kids that we're beginning to see and out there. I delved into some of the research and got to get a few friends and coworkers and colleagues and Ken got involved and we formed a group called the FASD, the Hawai'i FASD Action Group. They wanted action. They would call ourselves action and we that was three years ago and so that's how it got started. We all got together and we gave our first conference in 2017 we're going to give a second conference again in 2019. Excellent. Yeah. And so for those who don't know FASD, can you explain to me what that stands for and what types of spectrum disorders there are? Yes. Yeah. FASD stands for Fetal Alcohol Spectrum Disorders meaning that it's a spectrum of disorders and that's not a diagnostic category itself but there are several other diagnostics under it. For example, fetal alcohol syndrome has facial features. Children have facial features that are characteristic of the children and 10% of the children. So it can go misdiagnosed or not diagnosed. Undetected. Undetected for a long time. There are other features that are some with alcohol related neurological developmental disorders. ARND would call that that's all under FASD and that would be without facial features but with behavioral that seem challenging and possibly misdiagnosed. And what would be some examples of those behaviors? It could be impulsivity. It could be aggressiveness. It could be most of landmark type of behavior is not understanding cause and consequence. So whereas in parenting we might say, okay, I want to give you a time out and then come back and let's try again, it doesn't work. And so it's this disconnect that we're looking at. They're very friendly kids but because they don't have a sense of danger. So they can be oppositional and look as if they're misbehaving. Well because environmentally they might have what we call sensory disorders so they might have things like the set overstimulated by the environment and so they don't know how to control that. You have issues of memory so when they can do something one day and they can absolutely not be able to perform it the next day. So these are the behavioral, some of the behavioral indicators that hey, let's take a look at. So for families that may suspect that something is going on, what is a way that generally you can tell or what's the diagnosis or what's the process for being able to determine that? Well generally it comes in through the behaviors and just like kids came to our court because of their behaviors, therefore it was not diagnosed. And what we can do is when I take a history for example, I look at the school history, the birth history. Birth history meaning that how were they premature, you know, were there growth within the normal range, were they able to make the milestones and so on and so forth. Usually a pediatrician does that if you're going to go for a full assessment. And then other parts would be I take a history of the school when these difficulties first arose. And some of these difficulties can arise in not even kindergarten but preschool. For example, I had a grandmother and all of this is confidential, I'm kind of mixing up the facts here. But a grandmother came in and asked why is my four-year-old who's so lovable and so wonderful get expelled from nursery school, you know. Because one thing he bit the teacher who startled him. And I, knowing some of the family history of many of these families, I suspect, I wonder if there was some fetal alcohol exposure. His child got overwhelmed, didn't know what to do, so he bit. So these are the behaviors that begin to indicate multiple school expulsions, difficulty focusing and concentrating, really misbehaving. They often have diagnoses of ADHD, you know, attention deficit disorders. They have oppositional defiant disorder diagnoses. They have everything, even autism. But it might be a disease. Do you know what the incidence rate is for people being misdiagnosed? Yes, especially most of a lot of the children go into foster care, unfortunately. So about 99% they figure are misdiagnosed. And adopted, well, that's for most of the kids, about 99%, anybody with AAF, with FAST. But what they're finding in the foster care and adoptive populations, about 85% are misdiagnosed or missed at all. So it's pretty high, and about 70% of the kids in foster care have an aviage. That's a really high percent. It's pretty startling, yes. How do foster families get support to be able to address that for them? Well, we often say that the best way to get support is to get an early diagnosis. Because when you get an early diagnosis and assessment and get diagnosed, then you'll be looking at the speech and language issues. Many times they have difficulty processing language. And so you might understand every third word. So if you can speak simply and concretely, you'll be given that type of suggestion on how to raise these kids. These children need support, special support, that deal with brain damage. And so that brain damage that occurs, occurs while they're in utero? Yes. What would, people often say that alcohol is the most damaging substance. Why is that? I'll have Ken answer. He's a biochemist. He has a better explanation than I do. To understand what happens in a person that has a prenatal exposure to alcohol, the pregnant woman, you have to understand what happens to the alcohol. When a person drinks alcohol, the alcohol is broken down by two enzymes, primarily in the liver, that converts one person's enzyme, converts the alcohol to what they call acetaldehyde. That's a very poisonous substance. And then that's further broken down by another enzyme that produces acetate, which is more or less harmless. When you think about the human brain and you agree that all behaviors begin in the brain, then you understand all the senses, everything, executive functioning, thinking, all starts with the brain. So essentially, when you have FASD versus a normal brain, you have two different type of brains. What's happening here is that when a person drinks alcohol, like I said, the poison, the acetaldehyde is formed, actually damages the construction of the neuron patterns or the nerve pathways in the brain. So the brain is made up of billions of neurons, and how they're connected can be kind of seen like train tracks. And so a normal brain, the train can run on the tracks easily. But for one that's been affected by alcohol exposure, the tracks are not formed properly, and therefore the train gets derailed. And so you see that in the specific behaviors. And is that more common among alcohol use, more extreme pregnancy than other drugs? People I think are very surprised and often want to say that you could have a drink, or my doctor said it's okay to have an occasional drink. Is that really true? It depends, because there's a genetic factor involved. As I mentioned, there are two enzymes that break down the alcohol. The second enzyme converts the acetaldehyde, which is the poison, and converts that to harmless acetate. Well, but then people have variations in that amount of enzyme and the activity of that enzyme within their livers, primarily. And so in Asia, for instance, there's a specific gene mutation in Asians. And approximately 600 million Asians have this particular mutation, which doesn't break down the acetaldehyde to the acetate, and causes, therefore, headaches and flushing and all that. And so they don't drink. But if you have that particular enzyme, then depending on how much you have, you could have women that claim to have drunk heavily during their pregnancies and have a perfectly normal child. But they have that particular enzyme that can clear or detoxify that acetaldehyde. I see. And does the child's individual genetic makeup also make a difference for that exposure to alcohol? Yeah, so when the developing fetus is developing, their liver is also going to be formed. And then that particular liver will start metabolizing the alcohol, too. So you've got two double, kind of like a double whammy, where the pregnant mother has metabolized the alcohol to the poison, acetaldehyde. They have a baby that also is metabolizing. So the concentration effect is very strong. So, like I say, fetus is very vulnerable, many, many. And not only does acetaldehyde affect the brain function, like I said, those neuronal pathways, it affects everything because the immune system is affected, the entire central nervous system. And therefore, many of these children with FASD have other problems, health problems besides just a damaged brain. I see. So does that kind of lend itself to the hyper sort of responsiveness or the sensory disorders? Yes. And then the impulsivity is with the executive function with the brain, for example, they can't control their emotions as well as most people can. And so they look aggressive, or could be. And I think they're just trying to, at some level, trying to deal with their environment. However, we do have to restrain them and help them learn what's best. And what kind of process is that for helping people to learn and self-regulate? I mean, is it that much harder for someone who has this, you know, alcohol exposure and what does that look like for them? Well, it's difficult because it really involves a village. You know, a parent, it has enough to do to think about what the child is exposing to school, their church, their communities on the playground. And so you have coaches and other people around them that need to learn about this so that they can help the child maintain within an environment. For example, in the classroom, we often say keep the classroom as clear as possible to avoid over-stimulation. If a child is, that you know, has FASD, or you suspect, they might be poking at other kids and irritating other children. But that means that they need, the way to learn is through some activity. So you are adjusting the environment to the needs of the brain and the child. And yes, you can have very successful kids. At our conference in September, we've invited someone who has FASD, was adopted, and she is going to present her story. And she's written two children's books. Yeah, and she says, were it not for the help of her parents, the help of the school, the help of a community, she could not do it. And she did go into drug and alcohol use. She did go into other, you know, she was bullied at school. She has her own history, but they can be successful with the right support. Yeah. Well, we will definitely get more into this and talk a lot more about the supports and what's available when we come back from this break. Stay with us, come back soon, and we'll have more here on Family Affairs. Aloha, I'm Cynthia Sinclair. I'm Tim Appachella. We are hosts here at Think Tech Hawaii, a digital media company serving the people of Hawaii. We provide a video platform for citizen journalists to raise public awareness in Hawaii. We are a Hawaii non-profit that depends on the generosity of its supporters to keep on going. We'd be grateful if you'd go to thinktechhawaii.com and make a donation to support us now. Thanks so much. Hello. I'm Karen Harris, the host here at Think Tech Hawaii, a digital media company serving the people of Hawaii. We provide a video platform for citizen journalists to raise public awareness in Hawaii. We are a Hawaii non-profit that depends on the generosity of the supporters to keep on going. We'd be grateful if you'd go to thinktechhawaii.com and make a donation to support us now. and make a donation to support us now. Thanks so much. Hi, welcome back to Family Affairs. I'm Lisa Kimura here at the Think Tech Hawaii Studios. With me today, Ken and Ann Yabusaki from the Hawaii FASD Working Group, Action Group. So we were just talking a little bit about the upcoming conference that you folks have in September. Why don't you tell me a little bit about when it's taking place and then any other highlights you'd like to share? Sure. One of the things that is gonna be held at the Halekoa Hotel in Waikiki on September 18, it's gonna be an all-day affair. And we're featuring speakers who have practical advice for the courts, for health issues, and for the school and home. So there'll be breakout rooms, breakout sessions for them to actually interact with the audience and talk about what we've been talking about earlier. We also are going to, we've had legislative issues and so we have some champions that we wanna honor from our Hawaii state legislature and recognize what work they have been doing to open it. Our keynote will be from Minnesota. Minnesota is one of the most progressive states on FASD. And so the executive director will be coming to share their experiences on how they got the services for their families. Excellent. And in what ways have they been so progressive, comparatively speaking? Well, they've been able to advocate for services and they are financially supported, not only privately, but through their legislature. And so they're able to have summer camps for families. You know, to learn about their children, how to work with their children and be with them and learn that there are a lot of other people like that. They have support groups. They have a legislative arm to help them educate legislators and move it. They have some research projects going on. So it's quite a, it's been 20 years in the making. So, you know, we have to keep that in mind because we get impatient sometimes. Yeah, and there's a lot to change and a lot of education that needs to take place. Exactly, exactly. What about with our educators and you know, Department of Education? Are they well informed or not informed enough? What else needs to happen there? That was what was a need. I think the Department of Education is concerned and they are trying to reach out. We are going to help and coordinate and all day training for those who work as counselors and they're supervisors, the supervisors of counselors, I should say, within the state. On September 19th, they'll have a special session, all day session on working with kids. Wonderful. So, I think they understand because it's been the long neglected and the kids need the help. And one of the things we'd like is to see the school psychologists, for example, who and the Department of Health come together and create assessments that are accurate for these children and keep the awareness going. I think that's what's the problem. Talk to me a little bit about the long-term prognosis. Can someone hope to recover or what can they possibly expect for their best possible quality of life? Yeah. Well, they'll always have brain damage, okay? It's a brain injury that is lifelong. However, with education and as they grow up, if we can catch them younger, they might be more amenable to help. And as they grow up, they might not like, you know, developmentally, teenagers wanna be like everybody else. Sorry. So, they might throw off any kind of support systems. But as they grow older and start to understand themselves better, then we can maybe put in employment supports. We can put in living supports. We can help them find mentors in the community to help them get through. One young lady said, were it not for her junior college instructor who also had a child with FASD? She would never have gotten as far as she did. And what they did was change the classroom so that, for example, her learning was through hands-on concrete learning. She had difficulty with abstraction. So, they made her do projects instead to demonstrate competency. And that's how she got through school. So, yeah. So, it takes a wide array of services. One of our people in the Action Group has a home in Wisconsin that she started up with people with FAS, poor people with FASD. Yeah. I think also to give the parents some respite about this. As I mentioned, it's very draining taking care of someone who is very high needs. Yes. Yeah. What has the Hawaii FASD Action Group been working on in regards to legislation this year? Well, this year we've been... This is our first year with experiencing legislation. Great. Yeah. It's been great. One of the areas that we tried to get in was to create an FASD category for developmental disabilities, just to name it, because we didn't feel like it was recognized next to autism, next to cerebral palsy, and others. That was, did not fly. Another area is that, and we're still working on that, we're still alive, is to create services through Medicaid for our people, for people with FASD, and any other disability, you know, developmental disability. And that would include things like community-based services. We need case management. We need people who can help our adults find a proper employment. We need people who can educate the public and create homes and living situations so they can stay within the community. You know, we consider the primary cause of FASD as a brain injury. That is the primary cause. What comes after that is called secondary characteristic. And that would be like isolation, depression, aggression. You know, the feelings that come in a world that they can't understand can't make a comment about being birthed into a world that's impossible for them. And we have to make the world possible. So that's one of the reasons why the last tertiary is that 60% of people with FASD end up in their criminal justice system. Many end up homeless. Many will, 90% have mental health issues, long-term mental health issues. And so you have a lot of comorbidity that occurs. And so we're trying to avoid that. And is there any kind of perpetuating the cycle? So if someone's growing up with issues and say that it leads to addiction, is that then contributing to the next generation of children with exposure? Yes, yes, that's why you should have a whole gamut of services, what we feel like right now the state is trying to implement what they called a brief intervention strategy where you screen women at their routine exams about drinking and caution them if they want to get pregnant to withhold alcohol, just to educate them. All the way to the gamut of, yes, a woman who is pregnant and it has an addiction issue or has difficulty controlling her drinking. Yes, there are facilities that can help. And there are, but it's not to punish the woman. That's the last thing we want to do. We want them to say, hey, we want a healthy kid. If we can create a good nutrition program for you, if we can decrease the stress on the pregnancy, have a supportive environment, a supportive spouse or supportive partner or family, we can hopefully mitigate some of the long-term effects of alcohol damage. And I do think a lot of times women with addiction are very much demonized or vilified when they're pregnant, but addiction is a disease and it's not well understood by maybe the majority of people. How do women get into treatment or how do they get services? Because we know that there's not enough. Right, there's not enough. And also how do we prevent this exposure from happening? Well, my hope is that they would seek help. And this help that we have is, for example, we have Women's Way, that is a residential program for women. We're dealing with a lot of the, some of the substance use treatment programs in the community and trying to educate them about FASD so that they know that some of the people they have already accepted into the residential or outpatient programs can be screened and then treatment plans tailored to those with FASD. And what would a plan look like for them? We'll be an example of that. Well, it would be like concrete learning, simple instructions. It would be like, sometimes often in treatment programs they said, oh, okay, it's all cognitive behavioral, okay, we're gonna teach you how to cope with anger. Well, maybe the way of coping with anger is not counting 10, one to 10, or try to deep breathe and all that. It might be, okay, that means you need to go out in peace. And I'll tell you when, because you might not have the insight to know when you're getting angry. I'll cue you and I'll teach you. And that's, if we can get that cooperation between us, the relationship between us, it's okay. And so that I had one kid in residential treatment and he was agitated for whatever reason when I came there to talk with him and he was pacing with a chair over his head. And he says, Dr. Anne, I can't control this. It's as if my brain is switched cheese and that's holding on to what he had learned and trying to exercise his side just. So we put it down and went outdoors. So those are the kinds of things that we can try to control for them. Those are treatment programs. And a clear background, less stimulating environment teach them about what they need, teach them routine, we give them routines, we give them close supervision and coaching. I call it coaching. We just have a couple of minutes left, but how long would you say it would take someone to kind of develop and really see results from following a plan like that? Well, I think it's gonna come and go. If we can keep it up. For example, in the elementary schools, we get a diagnosis and elementary schools are great because they're one classroom routine. We go to middle school, they have different classes. That transition is difficult for them. So if we can queue, find out how they can transition into middle school better. Each child is individual because we don't know what, how the brain has been affected. So if we can prepare them for each of the transitions in life and create supports for them, that would be the way to go. Excellent. We're just about out of time, but one more time just remind us when the conference is and the details for anybody interested in attending. Great, it's gonna be September 18 at Halecoa and it's an all day affair. And they can, I don't know, they can contact me and I can, or the program, and we can certainly send out the registration to them. Excellent. All right. Well, thank you so much for joining me today. Thanks for being part of the show and sharing all of your information with us. We really appreciate it. Thank you for having us. Thank you for having us. I'm Misa Kimura. I'm the host of Family Affairs and we'll see you next time. Hello.