My mum, my birth mum, she drank alcohol when she was pregnant with me, which she shouldn't have done. I don't think women understand totally that when you drink when you're pregnant, this is what you risk. because these people have the <br>disability forever, but so do you. We found that foetal alcohol is a very -- it's a bit of a taboo subject. Not a lot of people like to talk about it. I love my daughter and my grandchildren, but I can't fix them. Mums want to fix things. This is one Nana that can't fix it. Jaden Saunders is seven. He's surrounded by a loving family, parents, two sisters, and a grandmother. He's growing up in a real paradise. Yet none of these things can undo the damage that was done to him. as an unborn child. Jaden will always live with the effects of foetal alcohol syndrome. It's a lifelong disability. Jaden's birth mother was an alcoholic with <br>a long history of drug use and mental illness. The alcohol she drank during pregnancy damaged his brain development The moment he was born, he was put into State care. The Saunders family knew right from the start that the little boy, up for adoption was affected by Foetal Alcohol Spectrum Disorder. I was nervous because we've been told that <br> he's going to be quite severely handicapped. So I was a little bit nervous. <br>I didn't go in to see him to start with. Michael went in frist, and he said, "You know, he looks normal and he looks healthy, and he looks happy." So I went in to have a look, <br>and I picked him up and held him. He looked straight at me and that got me right from the moment. So I said to Michael, "You know, this is what we need to do. <br>He needs a good home." As a newborn, Jaden was given an APGAR, a measure of his physical responses. The news was bleak. You know I can remember being in the hospital when he did his first APGAR test, I think it was. And you know, I can just remember the nurse's face who did it. She was crestfallen and just really what limited opportunity she thought she's going to have. <br>And at that time, you know, driving home we both said, "Look, we're going to do our best to make him a functioning member of society as we can." You know, we're a great believer in nature, <br> and you just have to stick it in. On any given day he's abuzz, constantly moving. - And now I'm done. "Typical boy behavior," some might say. But the hyperactivity is a symptom of the alcohol damage. - Let me help. You still have to clean that up. - Calm down - Get this out please. Please. - You think I can get a little more of ... - That's not careful. That's a help. We have been told by a lot of people that it's just a boy thing. It's very difficult to explain to someone that it is not. He is really hyperactive when he's not on his medication. He actually shakes and buzz. You can actually feel he's buzzing. - Can I have some Play-Doh, Jaden? - No. [Laughs] Fine! - Oh, come one, Jaden. Can I have -- - Why don't you give Megan some of the scraps? - Wait. I know -- I'm done at making [inaudible] - That one. -Oh, good guess. - Oh, I guess. - Good job! - That's very slow process playing with Jaden, you've got to -- - Agh! - You've really got to negotiate and -- -- take it slowly and you know -- -- think about what you're doing and how it's going to make him react. - Done. - You got to be careful, buddy, they're only little. - Bong. I am the king [singing] ta ma la ta ma lalala. Whoo, whoo. Bonk. If he's feeling frustrated or agitated, I ask him how he's feeling, and he often say he feels like a stormy sea But we've had to encourage him to learn he's feeling so he can articulate it to people around him so that we can understand him as well. This is [inaudible], this is Sherlock, and this new meowie fowie is called Meopot. Come here all of you. Foetal alcohol spectrum disorder affects part of the brain that controls decision making and working out the consequences of actions. - Honey, it's going to be lunch time in a minute, <br>and I need you to wash your hands. - Can you go and do that please in the big bathroom? Kids with foetal alcohol effect are often first diagnosed with ADHD or labelled hyperactive. But that's just part of the picture. - Good job! You can go and put your magnet on your hand washing chart now. - I know and now you're right. Do it. Put that in there. Each child is affected differently. - So these are your crackers. - Thank you. - Do you want a little bit of tuna? - Eh, no. - No? Food's always been an issue for Jaden. Even now, he still doesn't have the appetite of a normal child. - Give your milkshake here, honey. - This is greater. We'd always going to have today. He likes crunchy textures. He doesn't eat anything that's too soft or mushy. So mostly his diet consists of <br>crackers and biscuits and -- - and hard lolly. He's got a very good sweet tooth, haven't you? So it's supplemented food. We have the PediaSure milkshakes which help him with nutrients that he's missing out on. He won't eat any meat at all, not even a sausage. - Don't forget your milkshake. Have some milkshake as well. We were told that stimulating his brain was a very big part of his development. And if we could do that early on, then, you know, we had a good chance of growing his brain a bit more. - Leee-gooo! Lego. - Okay, sit down. - All right. I can say his first few years were just stimulation. - I'm making the thing-a-ma-thingy. - And I'm -- we just spent hours-- I was just doing stuff just to get that brain working and just to reform as many of those bonds as we could. I guess the biggest thing is his impulsiveness. - Yeah. Or, his just ability not to be able to regulate, or not to be able to see the consequences of his actions. I think that's the biggest thing. Just don't hit the table. [Action, upbeat music] They're definitely getting better. I think a lot of it is that we're learning to deal with him better as well. And we've had instances where he's just<br>banged his head for over an hour. I've had to put helmets on him so that<br>he wouldn't damage his head anymore. He would try and hurt himself any way he could.<br>We had to take everything out of his room when he was younger because he<br>would just use anything he could. He would break things in order to<br>be able to use them to hurt himself. We've had an instance where he got frustrated<br>with one of his sisters. And he had -- he just went into the cutlery drawer and grabbed a knife and threw it at her. So we've had to get rid of all that sort of thing. We've had moments where we've actually had to hold<br>him very tightly for over an hour so that he doesn't hurt himself because if he gets away from us,<br>he will either run and hide, and we might find him or he will hurt himself a lot. He's had concussions a few times from just banging his head on the walls. He's even put dents on the walls by punching them. So we've had a lot of issues with self-harming and<br>hurting other people. But when he's, when he's calmed down,<br>he understand what he's done wrong. He just doesn't understand it in the moment.<br>It's like he's a different person in that moment. - I'm going. The Saunders have enrolled Jaden in a small private school. At first they got some funding for teacher aids, but that was limited to one year. <br>Now, they pay for one themselves. - You remember how to feed them? - I don't. Keep your hand flat or else he'll get fingers. - Whoops! I dropped it. He doesn't sit still at all very well. We probably get,<br> in a classroom environment; I can get him to sit still to begin with for maybe two minutes.<br> He would disrupt the class immensely, which would set the other kids off. It was difficult the first year he was there because <br>he would run away from school all the time. And as a teacher, they can't really leave their<br>classroom to run after one kid. So I would stay at the school for the first six months that he was at school. So I sat on the playground a lot. And when he ran away, I would have to come and take him back to his classroom and sit with him and calm him down and stuff. - Okay, I'm gone. The major difference is not being able to teach him something that you know he's not going to do again. - Jaden, come here buddy.<br> - Come back. You just constantly reiterate the same thing time after time, “Don't touch the stove, don't touch the stove, don't touch the stove.” - Jaden! The condition of is brain is that he just doesn't<br>-- it doesn't stick. - Jaden! - Did you find him? - Be there in house. - Be good. - I'm over here. - Just don't run off like that buddy. Valeire McGinn is a neuropsychologist and one of a <br>andful of people specializing in the diagnosis and treatment of foetal alcohol effects. No one collects stats on how many children are born affected by it, and few doctors are trained to recognize or treat the condition. - Come on through. I mean it's a disability. It is a medical condition. It is in the brain. It's only recognized in terms of being able to access disability services in New Zealand if the child's IQ is 70 or below. And we know that alcohol exposure prenatally knocks IQ back, about 10 to 20 points. So that means to actually come down into the retarded range. You know, a big number of children do, and before they can access disability services that may or may not be suitable for the condition. But we have a huge number of children who have higher IQs, have equal degrees of brain damage but who are not eligible to receive any disability services. And you know, until something's done about recognizing it as a disability that it is, those children are really slipping through the cracks. When Katherine Law was born 34 years ago, few people had even heard of foetal alcohol syndrome. It was 16 years before she was eventually diagnosed.<br>She has no contact with her birth mother. I don't know much about her or anything or to do with her because I was actually adopted. I only had to be taken away from her. - Hey, Deb. - Hi. Two years ago, Katherine finally left home. - You better get ahead to look at what<br>you're going to eat for dinner tonight. - Yes. Now she's in residential care with flatmates and live-in caregivers. She's never held down a job. She's happy here. But places like this are few and far between. - What kind of meal are you looking for? I'd go with ravioli with carbonara. - That sounds good, Deb. Making friends and keeping them<br>has been one of her challenges. - I want ... so we need ... ravioli and carbonara to the shopping list. People didn't really want to be my friend, and I never understood why because I like the same things, I had the same interests or something. I was just as -- well, I thought I was just as fun to be around as them but maybe it's because I'm short. I don't know why they didn't choose to be my friend. And if I tried to join in a conversation with them, just fit in, but then they always just give me horrible looks, making smart, mean comments saying, “Why are you talking to us or being near us.” Or, “You're a loser. We don't want anything to do you. We don't like you,” and stuff like that. And it was really hurtful. Once a month, she stays with her parents for the weekend. Katherine was the third child to be adopted by Bill and Pauline Law. - Hi, Mum. I'm home. - Hi. - Lovely to see you again. Oh, did you have a good week? - Yes, thank you. - Hungry? - Yes, I am. - Come on, let's go and get some lunch then. - Okay. They already had three sons of their own. When it came to this sixth child, Pauline knew there was definitely something different about Katherine. - Hi. Love it. - Can I make you a sandwich? - Yes, please. - Okay. You can see what cake there is in there. All right? - Yeah. The teacher would say, “We're going to go to the hall now, and you need to bring your bag and you need to bring your recorder” or whatever with them. And Katherine would only remember the last little bit and would stand there not knowing what to do. And of course, she'd get shouted at. “Haven't we told you … mmm?” And so they provided a buddy system, and she would -- another little girl would take her. But a couple of times, she walked home, and she'd turn up at home. And this little 5- or 6-year-old, you'd think, “What's she doing here?” Then I'd have to ring the school or they'd be looking for her because she didn't understand all the instructions and would just come home. - I've done some baking. - Yum. They were the early years where she was slow -- Well, that's pretty good. -- and delayed development that was. But as time went on and then she started to get older, she became slow, delayed development and naughty because other people believed that she should have achieved these milestones, that when she's told to do something, she'll do it. But with Katherine, it doesn't work like that. You have to tell her a hundred times patiently and not get angry. - Did you brought any washing home? - No. - No, you've done it all - I washed it all yesterday. - That's good to hear. Now that Katherine is living in her own flat,<br>her visits home are happy for everyone. But the past is still a painful memory. My behavior wasn't so good when I was younger, but a lot of that is mistreatment towards me. I think it could be since it was my disciplining as well.<br>But I think a lot of it is just all the hard times of being to, had to deal with on my own, didn't have much support or people to turn to or talk to. And it just got a bit much for me, and I didn't know how to deal with my feelings. And when I felt threatened by people or sometimes I'd fight back, and I'm not proud of myself for that. I'm quite ashamed, but I never hurt -- I never did anything too bad to anyone. Katherine showed the frustration she was feeling in massive tantrums two or three times a week. Too much stimulation in public places added to the mix. - But if they don't have the usual kind of ravioli? - We'll just have to get a different one. Shopping trips were hell. Things like we're on holiday once, and I said she could have $100 pocket money for the week, training her if she wanted an ice cream, she had to buy it. We're in the bank and she wanted more money. I said, “No, you can't have more money.” Next thing, she threw a tantrum saying, “You're stealing my money” in a bank. And of course, here's the tellers looking at us,<br>other people looking at us. And we try to push her out of the bank to think, “Just get away from here.” She's screaming and yelling and everybody's looking around and you're thinking, “Just let's go home.” - Thank you very much. Thank you. I used to think that only shouting will -- I'd get heard and swearing and stuff like that. But yeah, I don't do that so much now. - Thank you. Fortunately, my neighbors and friends knew we had a child with delayed development. So they understood. But when you're outside and you get people looking at you thinking, “What a terrible mother. She can't control her child,” you do begin to find it really wearing. And there were times when I did begin to wonder how long we could keep Katherine in our family because it was just -- it was hard work. - This is my room here. - Oh, it's lovely. - Thank you. -Very neat and tidy. - Yeah. I keep it tidy every day. - Uhm-hmm? During her teens, Katherine's trusting nature led her to become involved with a known pedophile. - Some of my dolls that I'm collecting. This is Hermione from Harry Potter. - Oh, yeah it is her. The police intervened and contacted her parents.<br>Katherine had a lucky escape. I ... - Different sizes. - All of these drawers are full of them. - I put tissues on them just to keep them in better condition. Through all this, getting help was Pauline's biggest nightmare. There didn't seem to be a recognition that there was something really seriously wrong with this child. Their interpretation was there's something seriously wrong in this family and with these parents. And it's very hard when you come<br>under scrutiny for what you do. There's a lot of pressure around parents, you know, to kind of use consequences to make their children better behaved. And we know that consequences are not effective with children with foetal alcohol spectrum disorder. They tend not to learn through their mistakes. They will repeat the same mistake over and over.<br>They need situations altered so that they're not led into making those mistakes. And so sometimes parents, you know, are accused of giving their child too much help and not making them independent. But in fact, the child with an AFSD disability needs a lot of help, and they need to be treated younger and allowed to grow up at their own rate. And from people looking in and don't understand why parents seem to be overcoddling these children, but in fact, there are appropriate ways in managing them. And it is quite an intensive hard work for parents. Shirley Winikerei adopted two daughters 35 years ago.<br>It took 15 years before her youngest daughter Newa, was given a diagnosis of foetal alcohol spectrum disorder. Mum, Newa. Robihana. He's about or just under a year I think Kahurangi, and my other two grandchildren. Thirty years ago, the disorder was almost unknown so Newa's tantrums and defiance were unexplained. She'd only been at intermediate school a month,<br>and they were ready to expel her. There was no help from social workers. Nothing. Nothing. We're just classed as bad parents. And the schools, the school councillor -- I said to the Fraser High, I said to them, “Please don't expel her. This is what she wants to be on the streets.” “Nah, she's on -- she's on a downhill spiral.”<br>Oh, “She's on a path to self-destruction and there's nothing you can do about knowing except you pick her and the baby off the streets.” And sure enough, by that stage I started to learn about foetal alcohol because when she was suspended from Fraser High, she went to the Youth Resource Center. It's for naughty kids. And the councillor there said,<br>“I think I know what's wrong with her.” By then Newa had started drinking as well. She had her first child at the age of 14. Since then, there have been nine more children. This is three of her ten. So they range from 19 down to four months. And they range from Whangarei, central North Island and as far as Wellington. They're all in foster care. Determined to do something, Shirley has become an advocate for parents raising children with foetal alcohol spectrum disorder. Her garage is headquarters for lobbying government and supporting families. She's in touch with dozens of families across the country, most have fostered or adopted children, sometimes unaware that the reason they are in care is so closely linked to the mother's drinking. Shirley has seen first-hand how the damage done to the child is repeated through the generations. Her own daughter at first kept the child she gave birth to at 14. CYFS supported Newa for two years with Kahurangi, and they got on the birth control. Then she was in a home in Rotorua for teenage mothers. But unfortunately, Newa would disappear. And by the time I found her seven weeks later,<br>Kahurangi was suffering malnutrition. That home was there to supervise, not tell Newa,<br>“Feed the baby.” They'd give her the food, but she'd wander off somewhere else. So CYFS took baby off in the end. So after two years of to-ing and fro-ing and between Tokoroa and me, four times I took her and four times CYFS made me give her back even -- Newa was a shocking mother, roaming around at night, 12 o'clock at night with Kahurangi just thrown over her shoulder. Didn't change. Never can feed her. Lived off fish and chips and Coca-cola for breakfast. Saw her the fifth time. I can't stand this. So I took her. Shirley raised her granddaughter who is now 20 years old. Powerless and exhausted, she has seen her other nine grandchildren age 19 to four months go into foster care, some also diagnosed with foetal alcohol effects. The snowball effect and the ripples are going on to society are huge from this one factor. - Where are we going to go today? - Uh, probably -- Mike and Paula Saunders are determined that Jaden will be given every opportunity to make the best of his talents. - Put your helmet on first. - Oh. Well, the biggest lesson I've learned in dealing with Jaden is that you have to be prepared to compromise. You know, you might have an idea in your head that you're going to go and do something, but on the way, you have to free to stop and smell the roses. And you actually might not get to do what you want to do, but you get to interact<br>and have fun on the way. - Can you hear me? And that's really the lesson is just be prepared to be flexible. Sometimes you'll spend a day and not get anything done because you spend a day playing and interacting with him and teaching him.<br>And that's more valuable anyway. You know, I'd rather the fences are falling down than have him just, you know, not learning. - There you got them tight? - Yup. Foetal alcohol spectrum disorder is a lifelong disability. The best parenting in the world cannot change the brain damage caused by alcohol. She is having a fuller life, but she'll never have her own life. And I just think this disability is totally preventable, but women don't believe it. What could change is the way we support families raising these children. Right now it's under diagnosed, and there is almost no funding for services. There's a lot of advice we've had but just doesn't work.<br>So, you know, we just have to take what we think will work and fit it into what we do and just play it by ear and see how it goes when we go in. - Okay, I have it done.
