One In Five
Sunday 21 December 2014, with Katy Gosset & Carol Stiles
One In Five: Health Click
Teaching children about the birds and the bees is often challenging. But it can be tougher still for parents whose young people have learning difficulties. Katy Gosset meets a sexual health educator who is helping those families to navigate puberty and all it brings.
"Let's talk about sex, baby"
The song might be more than 20 years old but the topic is still just as important. Yet actually sitting down for the "Birds and Bees" talk isn't always easy and it can be even harder for the parents of children with intellectual disabilities. Now a Nelson sexual health educator, Annette Milligan, has put out a set of resources that explains sex and personal hygiene for people who have Down Syndrome or are on the Autism Spectrum.
The "Me" series of ebooks covers sexual intercourse, periods and masturbation as well as dating. Ms Milligan says, importantly, it also sets out some guidelines about the degree of intimacy that's appropriate within different types of relationships. She says some children with learning difficulties don't make distinctions between the people they know and the people they don't. "So running up and sometimes hugging someone who [is] a total stranger."
She says when the children grow into young people it makes it hard for them, both to integrate into their communities, but also to keep themselves safe. "It puts them at great risk of sexual assault or other violations so teaching children how to be safe is a pretty important issue."
Photo: Annette Milligan
Using Correct Terms
Annette Milligan says children with disabilities can often grow up in a "bubble", surrounded by adults and so they miss out on what she calls the "behind the bike sheds" talks that children usually engage in. She says this means that adults can't always be sure that their young people are using sexual terms correctly.
Ms Milligan says a recent example came from a residential care provider where a couple, both of whom had intellectual disabilities, had said they wanted to sleep together and have sex. But when the care giver asked them what that would entail, they said they intended to get into bed together with their pyjamas on and go to sleep together. "When the caregiver explained to them what sexual intercourse actually was the young couple were absolutely horrified."
Annette Milligan looks at the Me resources to Karen whose daughter has been using them.
Annette Milligan says the "Me" Resources also look at personal hygiene, explaining the different body parts that need to be washed, as well as basic functions like toileting. And she says designing the visuals and animation for the ebooks proved a learning curve for her too. "We started out with a picture of somebody sitting on a toilet." "Then I very quickly had feedback that a lot of people with autism wouldn't be able to understand that, that we had to show poos dropping in the loo and so we have."
Karen's teenage daughter, Karlee, has Down Syndrome and she says the books have proved useful when it comes to showering. "She's in and out of the shower within 5 seconds and so she reads through the book and she goes "OK, well, I haven't done under my arms, I haven't washed under my feet." Karen says her daughter keeps the books in her room and can refer back to them regularly. She says the resources have also helped to teach her that she should show affection towards her boyfriend in private rather than public places. Karlee herself says she's learnt from both the resources and the health programme at her school, Waimea College, about how to deal with unwanted attention by saying "Stop!"
Karlee is learning about sexual health at Waimea College.
Annette Milligan says she worked in the disability sector herself in 1980 and found there was negativity toward the idea of disabled people having intimate relationships.
"There was almost repulsion really about the idea that somebody with any disability could be a sexual being." "Sexual relationships were most certainly not encouraged in 1980."
She says society has come a long way and many parents now want their children to lead fuller lives.
"I find increasingly that people are going, 'Yes, yes, actually everybody's got the right to have a relationship.'"
The Me resources for young people with learning difficulties.
One in Five for 21 December 2014
Katy: Hello, welcome to One in Five. I’m Katy Gosset and today on the show we’re talking about the birds and the bees.
Recorded male voice: It is nice sitting holding hands with our special friend.
Recorded female voice: Remember to ask first, before you try kissing.
Recorded male voice: When a couple have been dating a long time, they might decide to have sex.
Katy: Yes, having ‘the talk’ with your children can be a fraught business, as many people know. And the Ministry of Education is also updating its sexual education guidelines, which will include issues of consent, coercion and safety in intimate relationships. But, for children with learning disabilities, it can be even harder to get a grip both on puberty, but also issues such as personal hygiene and appropriate boundaries within relationships.
Sarah Kennedy: So, Karlee, this is question one, what does it say?
Karlee: Puberty …
Sarah Kennedy: Puberty is when … what are your choices?
Karlee: Feel sick … or … into adult …
Sarah Kennedy: My body begins to change into an adult … or
Karlee: I chose the adult one.
Sarah Kennedy: You did – you chose ‘my body begins to change into an adult’. Very good. The next one …
Katy: Karlee lives in Nelson and studies at Waimea College. She is a teenager who has siblings and friends and she’s beginning to learn about her body as it develops.
Karlee (reading with Sarah Kennedy): My body is my own … and I have the right to say ‘no’ if I don’t like what someone is doing to me …
Sarah Kennedy: Yeah, you have the right to say ‘no’ if I don’t like what someone is doing to me. Well done.
Katy: She also has Down Syndrome, and her mother Karen says talking about sex and puberty isn’t always easy.
Karen: It has been a struggle for us, because with Karlee, she became quite aware of boys at a very young age, say nine or ten, and she likes boys, always has liked boys. So it’s kind of like finding those fine lines between hugging and kissing and making it an appropriate place for her, I suppose. Well, now that she’s older, more that, but when she was younger it was more … she just had some really good friends, and she wanted to be close to them, so for us it was trying to find a book or anything that she would understand, the right and wrong behaviour, as in cuddling.
Katy: Did you have any situations where there was inappropriate touching that she experienced, or …
Karen: Not at a younger age, but there kind of is stuff going on at the moment, of … yeah, inappropriate touching and … in the taxi’s been one thing, so for us it’s been going back and looking at it again and saying, you know, this is your body, you have to keep yourself safe, and what you are doing … I mean, you can’t say to her ‘stop’ because all the other teenagers are doing it and experiencing it, but it’s a way of making her aware that there’s a right and a wrong place. So, in one of the books, it says ‘private and public’, showing affection in a private place rather than in a public place.
Katy: So this is a case of her and her boyfriend or friend touching in a public place?
Katy: The book she’s referring to is part of a series of health and sexuality resources developed by a Nelson-based company, Health Click.
Karen: One of the biggest ones for us has been the shower, ‘cause she’s in and out of the shower within five seconds and so she reads through the book and she goes ok, well I haven’t done under my arms, I haven’t washed under my feet. You know, those kinds of things. So she re-reads them and then she’ll go into the shower and go ok, I have to do this, this, this and this. ‘Cause she forgets. So it’s been good in that way, that she has got those resources there that she can go back and look at and read.
Katy: The resources were developed by Annette Milligan who has worked in the area of sexual health for many years.
Annette: One set of resources that we have is a series called ‘Me’, and that is to teach people with learning disabilities about hygiene and about relationships, about safety in relationships, and about those inter-personal boundaries in relationships which are often very hard to teach.
Katy: What are some of the anecdotal examples of those difficulties that have come up in the course of you developing these resources?
Annette: Well, the kinds of things that parents talk to me about were issues like their child not making any distinction between who was a friend and who was a stranger, and so running up and sometimes hugging somebody who was a total stranger, and that might be ok if that child is within your visual distance, when they’re quite young, but when that child grows into a young person then you start to get issues which make it very difficult for social integration of that person. And it puts them at great risk of sexual assault or other violations, so teaching children how to be safe is a pretty important issue and quite a difficult issue to teach those boundaries in relationships that most of us would just learn by osmosis, but people with learning needs really have to have that taught quite deliberately and quite specifically. So let’s just have a look at the first one here, on the friends, and you can see that it is very simple animations and very simple buttons to push. So, when to hug – let’s push the arrow.
Female recorded voice: A smile is a nice way to greet strangers.
Male recorded voice: A handshake is often a good way to meet an acquaintance. Some people like to hug or kiss – others do not.
Female recorded voice: A hug or a kiss is a nice way to show we like our very best friends or our family. Thanks Mum!
Annette: Just a very simple way of articulating the boundaries of relationships and friendships.
Katy: Have the families you’ve worked with – have they reported more serious confusion over boundaries?
Annette: Yes, it’s become a big issue for adolescents who sometimes will go away with a stranger, or someone who is a relative stranger, and sometimes the parent doesn’t know even where the child is.
Katy: And what has happened in those circumstances, have there been incidences of abuse, or …
Annette: Sometimes there has been unwanted sexual activity during those interactions, so … and it’s a great anxiety for parents with children with special needs, that their child could be victimised, and the risks of that are quite high, and most parents understand that their children are particularly vulnerable to that, sort of predatory behaviour, really, so teaching their children that they have got to make a distinction between who is a friend and who is not a friend, and the things that you do with a stranger and the things that you don’t do with a stranger. That’s really crucial.
Katy: She was already producing a general resource called Sex Smart for use in mainstream secondary schools, when she was approached by the parent of a child with autism.
Annette: She said to me, you’ve got to make one for people with intellectual disabilities. So when I started to do the research and the development of the resources, I looked at what teachers and parents were using and I found – a lot of it looked like it had been produced by a public health nurse in 1955, and it was pretty dreadful line drawings and black and white, and on very fine paper …
Katy: She said she worked in the disability sector herself in 1980 and witnessed opposition to the idea of people with disabilities having intimate relationships.
Annette: It was almost repulsion, really, about the idea that somebody with any disability could be a sexual being. Sexual relationships were most certainly not encouraged in 1980. And we were just beginning, at the time there were a few people at the cutting edge who were saying – hang on a minute, just because you’ve got an intellectual disability it doesn’t mean to say that you haven’t got the right to have a loving, sexual relationship the same as anybody else. And I think we’ve come a long way in 2014, so there are many parents now who want their children to have the opportunity to have a full life and that includes a full sexual relationship if that is what they want, but they do need good education and they do need good support in order to stay safe.
Katy: Coming back to that idea of a revulsion – is it also putting it in the too hard basket, thinking well, for some parents who are probably very busy and very stressed as it is, is it a case of thinking that’s just too hard to go there?
Annette: I think it is. I really think it is. These are parents who are really struggling to teach their children even the basics – even how to wipe your bottom, even how to shower, and that’s why we included those in those resources. I can recall one parent saying, you know – look, it’s enough for me to do what I’ve got to do – this is just opening up a whole area and I can’t even find the energy to go there. I think even simple things like in that little book about periods, we talk about how to manage periods using pads and using tampons, and one parent said I don’t want my daughter to know about tampons, I actually don’t even want her to know that she has anything ‘down there’ because that could lead me to all sorts of discussions and areas, and what’s she going to do, and is anybody else going to put anything in there, and what’s going to go in there, and I thought that was quite interesting – I just got a sense of the enormous challenges that parents have in opening up any sort of sexual discussion, I mean even something as simple as using a tampon can open up an area of discussion that is huge for parents.
Katy: The difference there, is that whereas sexual activity is optional, your period is not.
Annette: That’s right. And this particular parent said I’m just going to teach my daughter how to use pads, I’m not going to teach her how to use tampons. And I don’t know that she was going to give any great explanation as to what a period was, or where it came from, or anything.
Katy: What do you think about that?
Annette: I’m very loathe to judge parents in their day to day life, because I think most of the parents … well, the parents I work with are doing so much good work … my own view is that everybody has got the right to have knowledge about their body and about how it works, and I think that can be reduced to quite simple terms that are quite understandable by someone who’s got an intellectual disability if we use the right words and language, so I’m a bit of a fan for trying to keep it as simple as you can. And I think we can do that, but I do think parents and teachers need a lot of support to do that.
Sarah Kennedy (talking to Karlee): … go up to number six, can you put your finger on that?
Karlee: … other private parts might feel nice but we must do it private places …
Sarah: Good girl. Touching our private parts might feel nice but we must do it in a …
Karlee: … private places.
Sarah: … private place. Good girl. Number seven …
Katy: Part of that support comes from school programmes. With the help of Sarah Kennedy, from Waimea College’s special education department, Karlee is learning practical information about male and female anatomy and also messages about how to deal with any inappropriate behaviour.
Karlee: … both people … ok both people in charge
Sarah: Good. We can only do this sort of touching in a private place, if it’s ok with both the people and with the people in charge.
Sarah: Good reading.
Katy: So how’s your day going today, Karlee? What have you been learning?
Karlee: I’ve been learning about health, about my body changing.
Katy: About your body changing.
Karlee: Yeah. And your breasts will get big.
Katy: Your breasts get big, yes …
Karlee: Yeah. And sometimes your body can … man wants to touch … or something like that?
Katy: You put your body by a man’s body and you might touch?
Katy: Ok. As your body develops, are you feeling good about it? How does it feel?
Karlee: It feels ok. Yeah.
Katy: And you’ve probably learnt I think, in both the class here but also through the ‘me’ books?
Katy: How often would you look at the books?
Karlee: I look at the books … they … I got a ‘me’ book about dating and stuff like that.
Katy: What do you think about the dating book?
Karlee: The dating one … about boyfriends and girlfriends and stuff.
Katy: Do you think much about that? About having a boyfriend?
Karlee: I don’t mind it … I think I have one now …
Katy: And how’s that going?
Katy: What sort of things do you enjoy doing with your boyfriend?
Karlee: … playing on the ipad …
Sarah: You’re playing on the ipad? Where do you do that?
Karlee: In the taxi.
Sarah: So you’re in the same taxi as your boyfriend?
Karlee: Yeah, I am.
Katy: What about situations where somebody might not be that nice, or maybe try and touch you when you don’t know them very well?
Sarah: What did you practice doing, you know you did some drama stuff? What word goes with that?
Katy: Right – and that’s what you’d say if someone was maybe touching you or …
Katy: Have you been in situations where you’ve felt uncomfortable in the past, when you haven’t been sure what to do?
Karlee: Sometimes, yeah.
Katy: And what sort of situations were those?
Karlee: People not to touch me and stuff. Yeah.
Katy: And so you feel now that you’d be able to say stop, don’t do that?
Katy: The Health Click resources have also proved useful, both for Karlee and her mother, Karen.
Recorded female voice: Sometimes, someone will touch you when you do not want them to. Say no and walk away. No. Tell someone that you trust that this has happened. Tell them that you want them to help you. Mum – someone touched my bottom today.
Katy: Did you initially feel quite daunted by …
Karen: Definitely. I suppose daunting and in not having anything out there for us to be able to access that was at an appropriate age level for her. And the understanding for her. Whereas these books and these other things have got good pictures, words that she understands, it’s all in good print that she can read.
Katy: She says TV programmes like Shortland Street can also throw up topics for discussion.
Karen: She likes to watch it, and she likes to have something that she can talk to her friends about, ‘cause one of her close friends has down syndrome too, so it’s something good for them to talk about it and they’ll talk about it amongst themselves, about stuff that’s going on there. They’re quite open about talking about things like gay relationships because they’ve seen that on Shortland Street, so all those kinds of things, you know, someone had a baby and … yeah. I suppose people always say to me there’s different degrees of kids with down syndrome and they’re right, there is, of understanding, whereas I’m quite lucky in a way that she does understand a bit more and it’s not so much work but I do feel for these parents out there that do struggle a lot more where the kids don’t understand as much.
Katy: That said, Karen says she can’t always be sure her daughter understands what terms mean.
Karen: She said something the other day and I said well, what is sex? And she said I dunno … so I suppose she hears it on TV and sees different things but still doesn’t really get it. And that’s ok by me.
Recorded female voice: Dating is about being with someone you really like. They will smile when they are with you. They are a special friend.
Annette: We talk about puberty development, so we go through in quite specific terms what’s happening to a body during puberty, male and female, we talk about, as I said, wiping your bottom and having a shower, and we talk about masturbation very openly, very frankly and very respectfully. And again, it’s about keeping things simple and not overcomplicating things.
Katy: And what’s been the feedback about those sorts of topics?
Annette: The sorts of responses that I have are the responses that really keep me going, so one of the mothers who was at a conference I was at on the Gold Coast just looked at the CD rom that we’ve got and she looked at me and said this would be just perfect for my 12 year old son who has down syndrome. And I usually wear bright colours and I’m a reasonably flamboyant person, and our resources are all bright orange and bright yellow, so I was like the showman at the fair and sort of with a big wave of the hand said well, you madam could take one home for $56 Australian dollars today! And her eyes filled up with tears and she choked and she couldn’t talk for about a minute. And I’ll always remember that woman because she was so overwhelmed with how she was going to talk to her twelve year old son with down syndrome about sex and sexuality, and the sense of relief that was with that woman was quite … it was just the most humbling thing.
Katy: Annette Milligan says developing the resources was a learning curve for her too. She says she consulted widely amongst parents and the disability sector and made a number of changes based on feedback.
Annette: So when we did this sequence on wiping your bottom, we started out with a picture of somebody sitting on a toilet, and then I very quickly had feedback that a lot of people with autism wouldn’t be able to understand that, that we had to show poos dropping in the loo – and so we have. So we have got animation … it’s quite an interesting process to go back to the graphic designer to say I need to see poos dropping in the loo! [laughs] But he did a beautiful job with a cutaway toilet so you get the concept of someone sitting on the toilet and then you’ve actually got the visual of what is happening in the toilet, because even that’s complicated – particularly for somebody with autism. Often times they don’t understand what they’re supposed to do on the toilet, they’re sat there on this cold thing – it’s a bit freaky, it’s a bit noisy, it’s a scary little room and there’s something behind them that makes a scary noise – and even that, teaching people what the toilet is for, and how to use it, is complex. So we did a lot of work to make sure that every concept that was there was really clear.
Katy: The resources are the result of her 25 years’ experience in the sexual health sector. And, in that time, she says there have been changes in attitude towards people with disabilities.
Annette: I find that people are really challenged by the idea that someone with an intellectual disability would have a sexual relationship. That they might get married. That they might have a boyfriend or a girlfriend. And there’s a lot less resistance to that than there used to be, and I find increasingly that people are going – yes, yes, actually, everybody has got the right to have a relationship. So I think it’s really good that that’s being challenged in the mainstream, just in general society. And I think we have come a long way. But I just can’t wait to see, you know, a couple of characters on Shortland Street that have got intellectual disabilities, and rock up to the clinic wanting contraception or whatever – I mean I think that would just be absolutely fabulous. So that’s kind of like … I think it’s kind of one of the last barriers, actually, about disability.
Katy: And she admits it took her a while to realise that her own brother, Gordon, who had a disability, might also want an intimate relationship.
Annette: My older brother had muscular dystrophy. He lived all his life in a wheelchair. And my parents … I didn’t actually realise that he had a disability; he was in a wheelchair, I wore glasses, it was like that in my family home, and my parents never had barriers - whatever we were doing he did too. But you know, not one of us ever gave any consideration to whether or not he had sexual feelings or sexual interest. He died when he was 24, so we never got to have really adult discussions with him, sort of reflecting, but I know at the time that it never crossed my mind that he might want a girlfriend or a boyfriend or that one day he might be married. We expected that he would live a long time, we expected that he would have a job, we expected that he would get a degree and he was a law student when he died – we expected him to be independent, with support, but we expected all those things of him, but never relationships. It never crossed our minds. And I like to think that we’ve come a long way since then.
Katy: And, as awareness of the issue grows, she hopes her resource will give people with learning disabilities a few more options too.
Recorded male voice: Dating can be fun. There are lots of things you can do together. It’s the way we find out about each other.
Recorded female voice: Watch TV or a DVD. You’re my best friend.
Recorded male voice: You’re my best friend.
Annette: The menu on dating is quite interesting because often people with disabilities, intellectual and physical, are brought up in a bit of a bubble, and they often miss out on what we used to call that ‘behind the bike sheds’ conversations that kids engage in. And so a lot of people with intellectual disabilities don’t actually know what these words mean. So I had an example recently that came from a residential care provider, they had a couple who wanted to be boyfriend and girlfriend and they wanted to sleep together. And they did actually say they wanted to have sex. And when the caregiver said what do you mean by having sex, what would you do? They really just meant that they would get into bed, both with their pyjamas, and sleep the night with their pyjamas. And when the caregiver explained to them what sexual intercourse actually was, the young couple were absolutely horrified – sort of in the way that a lot of 8, 9, 10 year olds might be, you know they go through that stage where they go oh, that’s so yucky, that’s so yucky – they were a little bit like that. But it taught the people in that facility that we can’t necessarily use words and terms and know that the person with the intellectual disability fully understands what those words and terms are. So, the section on dating, it says what you do when you’re dating.
Recorded male voice: Go for walks in the park.
Recorded female voice: Sit and talk about thoughts and feelings. It’s how we find out if we like each other.
Recorded male voice: I like you.
Recorded female voice: I like you.
Katy: She says that’s followed by a section that explains frankly what sex is, but gives some guidelines around consent.
Recorded male voice: When a couple have been dating a long time, they might decide to have sex.
Recorded female voice: Having sex is when your special friend touches your private parts like your vagina, breasts or penis, and it makes you feel happy and sexy.
Annette: Actually giving an accurate description of what sexual intercourse is about, so that’s important for the young person, but also those issues of asking permission and what to do if somebody is doing something to you that you haven’t invited. Because a lot of people with intellectual disabilities don’t have a good idea of what’s acceptable or non-acceptable touch, we have to teach all children what that is, don’t we, because we’re taught often to comply and often to do what people tell us, but all children have to be taught what’s appropriate and what’s inappropriate touching.
Recorded female voice: If you are having sex, it is important that you want to. If you are being forced to do it, say no loudly and walk away. No!
Katy: Annette Milligan says there’s a serious message behind the scenarios.
Annette: One of the reasons that drives me to keep on with this work is that the rates of sexual abuse of people who have intellectual disabilities is really high. And I find that just appalling. And we know that education can go some way to addressing that as an issue, so I think we all need to be informed and we all need to get the tools to protect the people who are most vulnerable around us.
Katy: And Karen says while it can be difficult to tackle issues like sexuality, it has to happen.
Karen: It’s going to come up and you have to deal with it. It’s just part of growing up. But it was thinking ok, well we’ve come to this situation, what’s the best way of her understanding, of how she’s going to be able to deal with it herself.
Katy: And she says knowing those books are available has made the process less daunting.
Karen: I’m not as scared as what I probably was before. Because I know that there’s resources out there now that weren’t there, you know, quite a few years ago. But I suppose in saying that, too, a lot of our kids were institutionalised so they weren’t out in the community as much, you know, like they are now. But it is good to have the resources there, and I do feel happy that they’re there now.
Katy: Well, that’s the programme for today and for the year. We’ll be taking a short break over the holiday season, and will be back with you again on February the 8th 2015. In the meantime, we at the One in Five team wish you a very Merry Christmas and a great New Year. Ka kite ano.