Fetal Alcohol Spectrum Disorder


My name is Daniel Alan Bensemann and I’m 18 years old. I’ve been trying to get my life on track because it’s been on the streets for nearly a year. My family don’t really want much to do with me. They don’t like the way I have been over the years. I’ve been getting in trouble with the police and the system since I was about 8 or 9 years old. So that’s why I’m on my own really. Well this is a place where I used to sleep. This was one of my main spots cause it’s hidden. I used to be just back from where I am here but I would tuck right in against the wall. People really never even knew that I was here. The outside of my body would have been around here, so I was pretty well sheltered. Because I was small my feet only came to about here and I could tuck them right in here. I’ve slept in some pretty hard places to sleep. I’ve spent nights on the street where I just can’t be bothered sleeping so I’d be just walking around all night. My grandmother got me assessed when I was young and it came back as that I had supposedly according to them I had fetal alcohol syndrome. They’ve tested me again recently and it’s come back as not applicable, nothing. It’s really confusing. But my grandmother and all the rest of my family seem to say I have fetal alcohol syndrome. Well I know for a fact I’ve got ADD (attention deficit disorder). But this fetal alcohol stuff is… my mum can’t understand because she never touched alcohol when she was pregnant with me. So she can’t understand why everyone is saying that everything I’ve done says I’ve got fetal alcohol syndrome. The DHB (District Health Board) seem to go ‘Oh well you’re crazy, you’re schizophrenic’ and whatever they think, all because of my genes that I’ve been passed down through the family. My sister is very similar to what I am. I’m Kirsty-Lee Marie Sixtus and I’m Daniel’s older sister. I was adopted out and Daniel was adopted to my grandparents when he was born so we didn’t really live together. I was always the good girl. I was diagnosed with fetal alcohol syndrome and that does cause growth issues, learning difficulties and other issues, really bad. Daniel has fetal alcohol syndrome. I think he denies it because he doesn’t want people to know that he has a disability because he thinks he’ll, you know, lose his ego that he has and be picked on, like I was picked on at school too because of my condition. It is terrible but you learn to live with it and say “You know what, it could be worse”. Daniel is very clever, like he knows what’s right and wrong and at the end of the day it’s his decision so there’s nothing much we can do for him he just needs to go out there and get help. I got bullied since my very first days of school. Pretty much every single day of my life I still get picked on today, but now I know how to deal with it. Back then I’d take the bait and then it would just keep going, keep going and then I’d end up hurting them or I’d end up beating them up. I had a bit of counselling and I’d just turn my nose up and I walked out on some of them. I just don’t like the way that they do stuff. It just annoys me they treat me like a child exactly the same thing. I did have a lot of support when I was younger but I didn’t really like that support, I felt that they treated me childish and I just don’t like people treating me childish. I’ve been like that ever since I was a child. Daniel Bensemann, I met him a few years ago. I represented him in youth court. He comes across as a nice, young guy. He certainly has some difficulties. He’s got fetal alcohol spectrum disorder, my dealing with that is we are all learning about that. It’s not really recognised, it’s probably at the forefront of it at the moment. Because of the condition that he’s got, he does get victimised. He gets picked on, he’s easily led. We have all these assessments, we’ve got all the people to tell us what the problem is, but the reality is they don’t get the resources or the treatment that they need so they are treated as an adult. And the cause of his offending really is part and parcel of his condition. He ends up in a criminal system for a problem that he was born with really. This place is Crossroads. It’s basically for people who can’t really afford a lot of stuff so there’s breakfast here, there’s lunch. It’s good for me because I can come in and get a drink of juice for 50 cents. I can get apples, bread and all that for free. So basically I’m not going to be hungry during the whole day. If it wasn’t for this place we’d be scrounging on the street. How long have you been coming here for? Ever since I’ve been on the street which is around maybe half a year going on a year. It’s no good if you’ve got no where to stay. Winter’s coming up brother, what are you going to do for the rest of the year? Don’t know. Try and keep out of trouble. I’m just lucky that I’ve got a roof over my head. When the going gets tough, “Can you put us up for the night?” Not going to be able to feed them. It’s not good, not good. This is mostly what I eat, just bread and apples. I do like my apples. Do you have any smokes, dude? My lucky day. And what are you going to do for the rest of the day? Are you going to be hanging, stressing out again? Oh I will just be walking around, minding my own business, same old, same old. I normally come here every morning for breakfast. And I try and come in for lunch most days I’ve got no income at the moment so as far as I know I’ve got about 10 cents in my bank account (laughs). I do walk around a lot. With the ADD that I’ve got, I was always on edge I was always trying to get attention. I used to be very bad with my temper, but now I’m more mellow, more calm, more hypo than aggressive. Well this was before I was found with fetal alcohol syndrome, they thought that there was ADHD so they gave me ritalin. Well I wasn’t taking the ritalin I was selling them. That’s why I was getting angry all the time. What I find is with the fetal alcohol syndrome is that the anger looks bad at the courts, the police look at it bad, but the actual thing that I see with it is when people have fetal alcohol syndrome and they get angry it’s not because of the fetal alcohol syndrome, it’s because of what’s going on at the time. And it could because someone’s getting a bit picky, picking on someone, and they just turn around and bang, and they beat them up. FASD is one of the most prevalent forms of neuro-disability that we are seeing in the court. A common consequence of the disability that a person would be unable to regulate their emotions properly, so under stress, they often behave explosively. It’s very easy in the justice system to miss this issues altogether because some of the most clear indicators of the presence of a neuro-disability such as FASD are also what people think are the very signs of criminality and deviancy. It makes no sense at all to simply criminalise their behaviour and treat it as a purely criminal issue. It’s a combined justice, health, social issue and if you respond to it with a combined approach we should expect it would be a huge reduction in re-offending. Currently the conventional approach taken is a very primative one. The law hasn’t kept up with the science of how brain damage affects behaviour. I basically come to the library everyday, use the computers, use the internet. It’s basically where I hang out because there’s no where really else. It’s basically all I do. I’ve been coming here ever since I’ve been growing up in Blenheim. I don’t really read books. I more, talk to friends on Facebook and Youtube. Do whatever. Pretty everyone else who’s in the library is in here everyday. It’s more like a friendly, safe location where I feel that I’m part of a group. When the library closes I just hang around for a bit and then cruise off. So basically this is my day in the library. Fetal alcohol spectrum disorder which is brain impairment and causes disability is not accepted as a disability in New Zealand. If you have Down Syndrome then throughout your schooling you will get special funding, you will get a teacher aide, you will get… families will get respite care, and they will get special activities and those children thankfully grow up with very good quality lives and children with autism also get services, but children with FASD currently don’t, are not eligible for services because they don’t reach the Ministry of Health requirement for a disability and that’s ridiculous. FASD is most definitely a disability. I would not want to live the life of someone with FASD day-by-day having to struggle and fail and be set up to not do well because people don’t understand my disability and services need to be provided if we want to be a civilised, fair society. I just mainly walk around town because its what I do. Just something to do. Minding my own business. Catching up with a few people, trying to ask people if they’ve got any smokes or whatever. Just being myself. I slept here last night, it’s one of my favourite window spots because this doorway here is sheltered from the wind this way and I can get the sleeping bag positioned so that the wind can go straight over the top of it, rather than into the sleeping bag which is going to make me cold. It wasn’t too bad last night. It got a bit cold sort of in the early hours of the morning but then it warmed up a bit more. It’s not as warm as a bed, but it’s still warm. I mean I’ve slept in a couple of public toilets, there’s a 24-hour one in town which is warm. I’ve actually got no shame. I mean I’ve slept pretty much right on the footpath. I will sleep in some of the most obvious places, where people have seen me. But I’ve woken up and seen $100 next to me so I was happy (laughs). During the day I will stash my stuff in my stashing spot. It’s on the river itself, but it’s one of those obvious spots where people don’t expect. I’ve never had stuff taken. This is my spot right here, see it’s a perfect fit (laughs). I just keep my life positive. I’m a really strong believer in what 2 Pac said in a lot of his speeches. No matter what, you keep your head up through times when you’re feeling really low, you just keep your head up and just push through, perseverance, and I believe a lot of stuff that what he said is true. Like keeping your head up in situations that might not be the best situation to be in but, yeah. When I’m sleeping or I’m stressed all I think about is that my life is worth it. I’m not the type of person who’s going to think ‘Oh I’m down, my life’s not worth anything’. I know my life is worth for me to live. I don’t believe in suicide or nothing so I’m never going to go down that path, I’ve never had thoughts like that in my life because I’ve just been a positive thinker my whole life. Around about 25% of prison populations in Canada have FASD, about 25% of children or youth in the youth prisons. So I’m guessing we’re way higher than that, that’s my guess. Maybe 30 or 40%, who knows. So it’s costing a lot of money to incarcerate people or to provide residential care in justice facilities that really needs to be provided within disability services. And it would be cheaper to address this at the younger age absolutely. FASD or foetal alcohol syndrome is really common in the world at this present time. There’s a lot of people out there that have got it. A lot of people that I know have got it. I even know some members from gangs that have got it. Just basically everyone that I know has traces of it. My mum was an alcoholic, my father was a heavy drinker who died when I was 7 years old. First time I got put in cuffs I was 13 years old and that was for drunk and disorderly behaviour. That was the first time I spent the night in the cells when I was 13 years old. I don’t really like places like prisons or in the cells I always wrack up in the cells or I end up getting beaten up by police. Well fair enough, because I do get smart to them, I do get rowdy, I wake all the others up in the cells and they get sick of it. The thing that I noticed with my temper most people have levels of temper like they will be a bit frustrated, then they’ll get a bit loud, then they’ll get a bit aggressive towards someone and then they’ll strike out. With me it’s from just a bit rowdy and getting a bit annoyed and then bang! I just hit straight to the top and that’s when I end up getting in trouble. I’ve even lost my temper in the court room in front of a judge and that wasn’t too good. He didn’t like that very well. Those with a neuro-disability like FASD are likely to come back again usually committing the same sort of offending because their impairment means that they’re under the sort of conventional responses the first time they appear they are not really able to derive the sorts of benefits that would protect them or the community from re-offending. So that’s one of the tell tale signs and I tend to see the same faces coming back and then after they’ve left the youth court see some of them in the adult court as well. What we know is if you’ve got a brain-based disability punishment is not going to make that go away. It’s probably going to make that worse rather than better. This is my sleep out. I was getting quite stressed out with my parents as teenagers do and I felt like I needed my own space. When I get really angry it’s like it’s not me it’s kind of like someone is controlling me and there’s like nothing I can do about it I just need to calm down because I’ll end up smashing stuff or something, so it’s quite good coming up here because it’s got no parents to annoy me. There are times that we really struggled. I sort of think you just got to hold on and ride it out a little bit and just continually be there. We became a family via an adoption firstly in Russia and then we were lucky enough to get our youngest son in New Zealand. They were both 18 months old when they came to us. So how was work this week? Yeah, nah it was good. Busy but steady. The early years of Jakob’s life with us was wonderful. I loved every minute of it. He was always a really full-on kid. But you know, he was kind of a likeable road really. He started having real trouble at school and I think it wasn’t really until intermediate that we started to see that. And at high school it was just a disaster. High school was where it really all happened. I was in trouble so much at school. I couldn’t focus on my work, I was real fidgety and just a real big distraction at school. Despite us trying to convince them that they needed to look at things differently, the education system I found was incredibly inflexible. He’s got a normal IQ but he struggled with learning because he’s dyslexic and he has poor working memory. His memory would not transfer from day-to-day so his learnings would not transfer from day-to-day. Unfortunately the education system viewed that as a wilful act on his part, that he was just being lazy, that he was just trying to get out of it, he could do it yesterday, why can’t he do it today. So the spiky learning pattern was never aknowledged or accommodated. We were getting a little bit desperate because he was starting to act out in a violent way as well so we were, you know, there were holes in every single wall of our house starting to pop up just from his sheer frustration. I wasn’t really good at following instructions. I kind of like doing my own thing. So that’s why I left school. I think he was labelled as a bad kid, he was treated like a bad kid, so he accommodated and became the bad kid. He would disappear on days on end and we didn’t know where he was. So just extremely stressful. There were many nights I was driving around the streets looking for him. There times when I thought there are two possible outcomes and that was prison or death. I’d get angry real fast like I’d just snap like that (clicks fingers) over little as things. Like “Jakob could you come and put the dishes away?” “Nah, F you. I’m going, I’m not doing that blah, blah, blah”. I was going down honestly, I was going down. Lots of pressure from school, lots of pressure from friends to be things and I think it’s just all too much. And he exploded. Given his history and where he was from, we started getting questions about alcohol consumption during pregnancy. Him and I went and got the documents and I could see in the court reports that clearly he was from a home where his mother had drunk alcohol. All the literature talked about was the facial features, he doesn’t have any facial features. So I thought he would be fine. They think only 10% have the facial features and 90% don’t so they look normal and we expect them to behave normal. I only got diagnosed like a couple of years ago so I was living with it and I didn’t know I had it and I felt I was struggling at school and then when I got diagnosed with FASD I got all this help which honestly helped me so much. After the diagnosis you actually start thinking about what the diagnosis is, is your brain damaged? So they are not thinking along the lines as you would as a normal person would be. You just got to try handling things differently and approaching everything differently. It sort of makes you think about putting people into a basket and calling them a nut or a badly behaved person. And you think, well there’s probably a reason for it so it does make you look at the whole concept rather than just an individual area which is quite enlightening. There are hundreds of children that are born with FASD that are undiagnosed. If you look normal, then they expect you to behave normal and when you have FASD and you can’t see it, people still expect that. And then it looks like it’s wilful bad behaviour when they don’t. Because of my FASD no one really knows like honestly, I’m like way different to other people. I think differently, people can’t tell me what to do they need to show me and I’ll get it. These are my pets, these are my babies. I work at Tegal and I actually bag whole chickens so I watch them come in on a truck and I think of my own little chickens and it kind of hurts me inside that chickens just like these ones are getting killed for food. The biggest thing is in what they call adaptive functioning so it’s how they function in everyday life. We take for granted being able to plan and predict the future so if we can plan our future we can see the goals in front of us you know, he’s living moment-to-moment. It took me a while to find strategies, like different ways to cope with things. Like when I got angry I used to just go crazy, but now I’ll just go somewhere by myself and just relax, you know just be by myself for a bit, calm down and then go and approach the situation. It is about routine and it is about structure and I think it’s about love. I’m a normal person but I just have these hurdles that other people don’t have Like that things I find difficult, that other people might find easy. I don’t find it me having FASD like a curse, like I kind of see it as a benefit. Like sure I’m different, but I’m still human. I took these photos and they’re from my backyard. I get a kind of buzz from taking a really good photo. I could go out there all day and just take photos of random things and there’s not really any right or wrong in photography there’s just photos. There was no support for parents anywhere. I started FASD CAN, it’s a care action network that’s designed to support parents and educate about FASD across our communities. I have parents from all over the country ringing me and emailing me most evenings. I just see the pain in the parents, there’s just so much pain. And it’s a loss of dreams and a loss of hope for their kids to have a normal life. And it’s just heart-wrenching. Parents get exhausted and they need a break. There are some parents that are just at the end of their rope and there’s no support for them. (dogs barking) This is my backyard, my river that I’ve got. It’s kind where I go just to get away. Every single day I come down here if I can. I was quite depressed about a couple of years ago. Yeah I came down here to sit down, just take photos and stuff and it was just real relaxing. Like it was real peaceful. Kind of my place to get away from everything. My little piece of paradise. If I could have one wish it would be that FASD is in the professional curricular of education, justice, health. They all need to learn about it and know about it and breathe it really because they are going to come across it. I’m on a ‘see food’ diet. I see food, and I eat it. Obviously if there’s a pizza or something on a park bench I’ll pick it up and eat it. Won’t bother me. Food is energy and energy is life. I’ve gone for weeks without food. Like I’ve gone for about two and a half weeks without food. Well, that was with a couple of biscuits a day. So there was still a bit of food there, but I was drinking just a lot of water. I’m the type that doesn’t like wasting, I love food, alcohol, cigarettes. I’ll go and buy a box to drink the whole box. Because I don’t believe in drinking to stay sober. If I keep it up, I’m going to go into the same sort of state that my father was in. Bugger all money, addictions to drugs and addictions to alcohol. My future is to starting life basically. Starting a family, getting a job. People keep on saying nah, nah, which really annoys me. It doesn’t have to be full-time, but as long as there’s a bit of money there, sweet as. We know how to reduce this problem. They need training and services that will lead them to being more successful. If they’re left to their own devices they will slip to the bottom of society and that’s just not good enough.

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