 I'm Cindy Sinclair and you are watching Finding Respect in the Chaos here on Think Tech Hawaii and I'm so glad that you've joined us today. Thank you very much for tuning in. I'm here with Ken Yabusaki and Ann Yabusaki. These guys are super amazing in working with people that are dealing with fetal alcohol syndrome disorders so there's a whole lot of stuff that needs to be unpacked and all that. But first if you wouldn't mind would you guys give us how about you Ann first. Give us a little bit of history about who you are and how you got involved in this. Sure, sure. I'm a psychologist and family therapist and I had I've been I worked a lot of years on the mainland but I am from Hawaii and I returned from Hawaii about 15 years ago, 15-20 years. 20 years. We returned together to take care of my parents and so but in coming back I was asked to create a clinical program and the clinical program had a the first contract was to work with juvenile drug court here in Oahu. So this this was a challenge and this was something that I'm passionately interested about anyway so we did take the contract and that back in early 2000 as the contract progressed and as I saw families from that program there were things that were not happening that were they were not I'm not used to having families not respond but this was challenging and I felt really pulled to find out well what what was I not doing wrong what was I missing and these families were great families so I began I heard about fetal alcohol spectrum disorder alcohol syndrome and I began to study it more so over the last maybe 15-20 years I've been looking at this phenomenon what is it how does it work what do we do about it and how can we give these families some hope that's always the key right to help people get further down the road and I understand you are a biochemical engineer is that right biochemical biochemists biochemists excuse me okay so tell us a little bit more about you Ken if you would please yeah I'm a retired biochemist and I became interested in FASD through Ann's involvement in her work with the juvenile drug court in which she kind of shared with me some of the problems she was have not problems but her observations of children even adults with FASD and so I said wow I'm wondering why she was having these the issues these people are having so I did my own research and tried to understand the biochemistry of what was going on in terms of FASD and to this day all the research that has been done with it with FASD is really no known mechanism but the one thing that is very prevalent is there is permanent brain damage permanent not you can't fix it it's done right so if you are damaged as a baby then it's for life you've got these issues in your brain for life correct when as the brain develops though you know you might be able to grasp more and do more things and so it there's always development along that line but but they will always be challenging you know and and we call it a spectrum disorder because those with the more severe disabilities are on one end you know alcohol syndrome all the way to those who are less impaired so each individual is different and that's the way it is with everything right yeah we react to trauma differently we react to chemicals differently that everybody's body is just a little bit different I think our first slide talks about the program that you guys have which is the Hawaii FASD action group and now tell us a little bit about that and how that got started well I got frustrated I'm sure this is I'm not alone in this and so I looked for other people who are dealing with this and I just sent out an email to friends and say hey and then parents that I knew that I was working with their children can we get together and let's look for resources let's the problem is there weren't any resources and I didn't know where to find resources for my family and so I said we got to create it let's let's let's work together and do this so now we have about 150 people who have joined and we have a listserv and we we're trying to do our best as volunteers we're all volunteers on how to get the word out how to create services and that's what the action group is about and I'm so glad you guys have come on the show today to sort of help get that word out thank you because it is such an important thing and it's something that can change I mean you can make a difference right when you I agree when you try to intervene in the early stages of these things is it possible to make a difference like if say someone drinks all the time and they find out they're pregnant and they quit would that make a difference in how much the baby would be affected you want to talk a little on that one well I don't think that any woman intentionally wants to harm a child in any way and unfortunately the stigma that's placed on women who drink and then end up with a baby with FAS or FAS there's a tremendous amount of guilt there so yeah we're trying to reach out to those who have this particular issue that it's really not their fault because they didn't know and these kids can function right yes of the if we make accommodations for them so so like you know if someone is blind we help them with a blind dog or a dog assisted living if they're if they can't walk we give them a wheelchair or cane or a crutches that's what we're talking about is making accommodations for these children and these adults they can function yeah what a difference that must make to them for them and for the guilt levels from the parent yes right yeah yeah that's huge difference when you did your research did you do like chemical research on how the brain is affected by alcohol or how can you give us a few more details on that sure when you think about what's happening with prenatal exposure to alcohol the developing fetus very is very vulnerable and and therefore you have to understand that when alcohol is broken down when when a woman say that is pregnant and just alcohol the alcohol is broken down into two chemicals the first chemical is very poisonous and then that poisonous chemical is cleared or detoxified further into a harmless chemical but the problem is is that that clearing or detoxification process is genetically determined so if you don't have a particular clearing mechanism and these are enzymes that do this in the liver that you're going to build up this toxic substance and then that is the one that will have the effects on the developing brain of the fetus so it's a kind of a thing in the liver then that determines how much you're going to be affected or not yes yes okay and so the child let's say a fetus that's developing brain is developing is exposed to this particular poison that I mentioned and that's converted from the first enzyme it actually involves inhibition of making whole tracks within the brain in other words the brain is made up of billions of neurons or nerve cells connected to each other and this particular sub toxic substance called acetalhyde actually interferes with the development of intact tracks big words wait see that I'm sorry my brain's all slow maybe we can go to that slide yeah I think we could but I don't know we have to go down to slide three or four if we can I don't even know if we can get there the next order once we start here we go the effects of pre prenatal alcohol exposure this is perfect this is exactly what we were just talking about anyway so it affects the entire body not just the brain yes because the brain is attached to the whole body yes when it says mostly invisible so it's not something you would see like you could talk to somebody you go to school with them you wouldn't even know right so it's not something that people need to be ashamed of right it's not like there's not everybody's gonna know about that that's kind I would think shame is is always a big thing isn't it kind of destroys people's ability to be resilient right shame just sort of inhibits all of that and so we can kind of maybe get rid of some of that shame to that help absolutely and only about 10% there are some facial features that can occur for women drinks between they found out day 19 and 21 of their pregnancy that some of the facial features when it's the facial features of the fetuses development and be affected and it's very specific in his time in that in I was read I was reading about that and I thought oh my goodness and so what happens that if it's only 10% then 90% of people have no facial features they interact like we do their IQs are more for the most part are okay it's the functioning level they have difficulty with a well we can talk about more about that later but they have difficulty that our masks that are invisible it's like having brain damage and you were perfectly functioning one day and the next day you know you're not you're not and you and you can't see it right and you know I've had a couple of severe head concussions in my life and same thing I had so I had concussive syndrome for almost a whole year after our accident that I was there nobody can see you right even the doctors while I was living in the south for one thing and the doctors aren't so swift down there but um these like there's nothing wrong there's nothing wrong with you I'm like there's something wrong with me I can't think straight I'm tired all the time I go dizzy and fuzzy headed and I'm not like this usually so what and finally I got to a doctor that said no what this is concussive syndrome that's exactly you have a classic case of it and I thought I saw five doctors and not one of them knew that oh my so it's like yeah you but you don't know you could look at like the doctors looked at me and said you're fine right like no there's something going on right and the kids they were born this way so sometimes it takes them it takes a knowledgeable person say have you had these symptoms do I notice you have difficulty with memory what's it like for you and and talks more slowly because it's harder to process information so I speak more slowly to them and and it's very much like that but they don't know it because they didn't know what it would be like oh right and think about that yeah that makes total sense to wow okay we've got another slide that we can show okay one last slide that we're just talking about this a little bit yeah and then we'll go to break right after we talk about this this is what you were just talking about how the brain it's off the track I like to say maybe that the brain is involved with all behavior all human behavior begins the brain all our senses executive functioning thinking reasoning all our feelings end up with specific behaviors now the behaviors are either ones that you can change and then some behavior you can't change so in the situation of FASD we're talking about a situation where as I mentioned the formation of these tracks through the nerve cells are either intact or either disrupted in some way or not incomplete or not complete and so you end up with a few specific behaviors a train that can go smoothly on the track to reach this destination or one in which it gets derailed because the tracks are incomplete and therefore you end up with behaviors that cannot be changed so that makes sense okay listen we got to take a break okay we'll be right back I hope you guys will stay with us don't go anywhere aloha my name is Victoria and I'm a host at the adventures in small business this is a collaboration between us small business administration Hawaii district office and its partners where we showcase the stories of local entrepreneurs and small businesses talk about how to start a business talk about great tips for small business owners please join us every Thursday 11 a.m. at think tech Hawaii you said my hello hey hello everyone and welcome to the think tech Hawaii studio my name is Andrew landing I'm the host of pretty matters Hawaii we air here every Tuesday at 10 a.m. Hawaii time trying to bring you issues about security that you may not know issues that can protect your family take yourself take our community protect our our companies the folks we work with please join us and I hope you can maybe get a little different perspective on how to live a little safer aloha hi welcome back to finding respect in the chaos I'm Cynthia Lee Sinclair and I am here with Ann Yabuzaki and Ken Yabuzaki from the fetal alcohol syndrome disorders no it's the Hawaii FASD group right action group action group sorry I think even more all that names in my head sorry we've got another slide I'd like to show um that talks about how they the FASD is underestimated yes could you talk to us a little bit more about how and what happens with that when it's underestimated like that okay well first of all we talked a little bit about how you know you had a concussive syndrome you look fine and yet you knew that the brain was not quite functioning and you knew something was wrong well that's how it's presented often so they might take a symptom a diagnostician a doctor or psychologist might take some of that symptoms oh you must have ADHD meaning that attention deficit disorder that's why you're so impulsive okay so we'll treat you with a little bit of you know we'll send you to a psychiatrist and see if maybe some medication might help or someone might say I think you have autism because those symptoms are like autism so many of the symptoms of FASD embrace these other symptoms learning disabilities and if the clinician is not queued in to FASD I'm gonna miss the whole diagnosis many kids and many clinicians are not aware of this right and and it's not taught in graduate schools and it's not no oh dear you would think it would be that's kind of a common thing I mean it's not common but it's it's common enough to know you're gonna hit it at some point in your year your professional career yeah sure yeah so is there any link between and I know I was reading something this week about this is there a link between autism and FASD do they yes yes in fact studies have shown that FASD can produce symptoms or characteristics of autism just from the alcohol exposure prenatally so it's all about the developing brain exactly so they could treat autism and get it wrong and one thing I should mention is that in the developing fetus when the pregnant woman is drinking metabolized alcohol as I said creates a poison affects the developing brain in terms of making intact neurons connections the other thing is that baby is as it develops is gonna develop its own liver and the same alcohol is gonna be metabolized we're talking about the bulk blood volume of an adult is quite large and so the amount of alcohol in there or the toxin is quite dilute but baby and being a very small entity at the time as a fetus is going to be have a larger concentration effect oh I didn't even think about that and then we talk a little bit about binge drinking and and you know just drinking maybe two or three glasses of wine or whatever week what's the difference between the two binge drinking would be at least four drinks at a time and many women are beginning have some women have reported it gets the concentration during a binge drink is different from a concentration to just one glass of wine when we think about it yeah that's what Ken and I were thinking about is oh you know this is different well I can remember when I was pregnant with my kids yeah that I mean I went and this is you know 35 years ago now so um but you know and the doctor said to me as I said you know I drink wine I like to drink my wine with dinner and stuff should I stop drinking this you know before all these this research had come out and stuff right he's oh yeah no it's fine oh yeah and I'm like I didn't seem right to me somehow but you know and I okay because that's how that's how far though the mentality has changed yes 30 years ago to today yeah we really know the specific effects on that developing brain yes that's wild to think about between 1921 isn't it interesting day just those three days or two days time yeah making that huge difference in their lives a lot of the and I wanted to point out that you know a lot of the kids from foster care come from substance abusing families and so when you see foster care adopted children you wonder about their past and so 85% in one small sample was misdiagnosed 85% that's huge yeah and that's you know and and that's why we're hoping that CWS you know child welfare services and protective services will take a look at their population and try to educate their foster parents because it's going to be tough on foster parents sure it will and adoptive parents and you want to know what exactly your child's past so that you can understand how best to help them and exactly how best to you know give them a lot of normal sort of life then in in just last year it was a study across the United States with 6500 first 6500 first graders were assessed clinically assessed for FASB and one in 21st graders came out with that's one in every class yeah that's at least one in every yeah yeah yeah so we were we were startled by the assist districts and this was just done in 2018 so the United States is a little bit behind in getting their research out so we're we're behind it sorry to interrupt you we are you think we'd be ahead of everybody but no okay shoots that's crazy I don't like the idea that in America we are behind these things yeah when we have the best researchers the best biochemists the best all of this and yet we still are behind wow yeah Canada for example has made progression in their programming and policies and we're trying to copy them a little bit you know that can when I was on my trip around the world we were talking about yeah yeah right when I was studying the way different cultures do with domestic violence and all that Canada has that the lowest incidence of domestic violence and child abuse of any country in the world and so I went there to see why you know what are you guys doing and I was really surprised what it is is they don't have laws and it is my opinion anyways to why maybe but they don't have specific laws against domestic violence and child abuse it's just assault they have progressive things that are embedded into the law to help people that are child abuse victims or domestic violence victims so that the you know the outcome is different for them to be more protected but it's still assault it's just assault there's no I mean it and I thought that was pretty cool I thought well maybe that's the that's just it's not something separate you know yeah it's not a different thing it is assault it's abuse right yeah so so how does this how does this compare with say like I know there's a lot of ice and methamphetamine that happens here in Hawaii well actually everywhere in the whole country nowadays right right but so how does what's the difference because I know I've worked with a few girls that have lost their babies because their babies were born addicted and so they take the babies away yes what what kind of affects are in with all of that too is that the same is it different is it I mean I know it affects the brain and yes how it's different yeah and has been looking at that a little bit more drugs like methamphetamine cocaine heroin affect the brain differently when as fetus is developing what happens in that case is the actual brain is receptors on the brain that receptive to those drugs but the tracks that as I mentioned that are formed like train tracks are normally developed the neuronal connections are there but the receptors on the brain through those drugs don't affect that particular making of the track so you're gonna have a baby who you've heard of crack babies come out right they're wired okay and that's because the the drug has affected the brain on the receptor but the tracks are there so therefore in terms of reasoning you can still reason but in the case where a baby that's been affected by prenatal exposure alcohol as I mentioned the tracks are derailed or not formed and therefore that's why you have the behaviors that can't be changed you can help a person that has been exposed baby that has been exposed to you know where some of the specific things that you can do I know there's a slide we've got about how it takes a village and stuff and some of the things that we can specifically do to try to help these kids and stuff so what as our medicines and well they come in from different different ways they could come in from mental health agency they could come in through substance abuse agencies they come through the criminal justice system you know the thing that that and they could be and they're largely at school so one of the things is to understand the disorder what what they're struggling with and try to accommodate I have for example one child that was having difficulty going from one classroom to another she would be bumping into people as everybody rushed through high school you know from one class to another what it was because sensitive to her she couldn't gauge her her people around her she had impaired ability to do that so what the teachers did was before the class changed to another class they would tell her to go to your next class she didn't have to go through the crowded hallways exactly exactly and then people didn't think she was trying to pick a fight because she was bumping into you right you know some we have little ones that might need more rest it might need their brain is being so stressed and so what I've seen some teachers do in the classroom you should just take those kids aside I said would you like to just lie down and and do your work in a prone position rather than at a desk making those accommodations if you want to teaching them distance and so one teacher did a straight line teaching them distant first graders and she would put sit now you stand on that line and then she'd put cross lines like a train track and this is where you stand just so that the children get a sense of distance and proportions right and then in juvenile drug court for example we would say okay you didn't do this or that come home at curfew you're gonna be we're gonna put you back in jail so to speak you know it's a detention right you know and it's a safe place but you didn't belong there you know and so what we did was to say maybe we don't need that what we need is to give them a time out but then they would come back and we we make accommodations that they wouldn't have to be at a certain place at a certain time but at least communicate with teach them communication right I think we've got one last slide and I know we're almost out of time yeah I'm like oh there's so much more to say you guys are gonna have to come back again another time and give us updates and stuff on how your program is going and what's going on with it and let's go back to that last slide though before we take it away too far so I'd like you to kind of point out some of the things that are out here this was some we have a monitoring system that is across the nation and what we found was pulling out the data that pregnancy and alcohol trends are high and they're increasing over 2000 and 2000 it was 4.8 in 2015 it's now 8.7% of the women who endorse that they have been drinking during pregnancy or during the third part of their pregnancy it doesn't mean that every pregnancy that everybody endorsed it so this might be an underestimated what we call a conservative right because people are always gonna want to admit it exactly I know what they did wrong and yeah yeah wow oh my gosh I'm so grateful that you guys came in I really am and I think this is such an important thing because we can make differences like these kids that are you know getting stamped with delinquent titles yeah they really aren't there's no they've got good hearts they just that's right I'm misunderstood yes and you know and so for the the parents out there for the kids out there reach out there is help for you the Hawaii FASD action group thank you I was gonna forget action again I'm like wait wait but definitely look them up find out get the information that you need to really make a difference for your life I'm Cynthia Sinclair and I'm really glad that you guys joined us today this is finding respect in the chaos on thinktecHawaii.com please come back next time thank you thank you