What's it like growing up with a sibling with a disability?
Airdate: 
Tuesday, July 11, 2017 - 20:30
Channel: 
SBS

Around 1.4 million Australians have a profound or severe disability. Siblings play a vital role in their early lives, but little is known about their experience. How do they view their relationship? What role do they expect to play in their brother’s or sister’s adult life?

Jodie Chambers, 47, says she and her brother Andrew, 50, were “like twins” growing up. They were completely inseparable. Andrew was born with Down syndrome, and today also uses a wheelchair.

As children Jodie understood his way of talking better than her mum, and was his protector in the schoolyard.

“One kid, I broke his nose once because he was bullying Andrew ... I was 6,” Jodie tells Jenny Brockie on this week’s episode of Insight.

Siblings of people with disabilities grow up with a complex mix of emotions – love, loyalty, care and compassion, but also guilt, resentment and grief.

Luke Thorne, 23, has a younger sister Olivia who has severe autism. He says when she is good she’s a beautiful person, adorable and super-cheeky, but in adolescence she could be violent.

The strain on families can be intense. Luke’s parents divorced and he ran away from home when he was 16. “My family is falling apart, my sister is so stressful and one day I just didn’t come back home.”

Some siblings take on caring responsibilities, willingly and otherwise.

Sarah McCarthy, 49, took over fulltime care of her sister Jo, 42, when her dad died in 2013. Jo was born with Arthrogryposis (joint contractures), epilepsy and brain damage.

Sarah and her husband were living in Canberra with their two children. They quit their jobs and sold their house to move into the family home in Sydney with Jo, a wheelchair user who needs 24/7 care.

Yvonne Whittaker-Rush, 24, also had a difficult childhood. Her only brother Ashleigh had severe Cerebral Palsy. He couldn’t talk, was nearly blind, and had to be fed with a stomach tube.

Yvonne’s brother died 3 years ago, when she was half-way through a law degree. She had more time to study, and her results went from average to exceptional.

“It feels like my success has come at the expense of my brother dying and that feels horrible,” Yvonne tells Insight.

This week on Insight, we hear how siblings deal with the many and varied experiences of growing up and growing older with brothers and sisters with disabilities. 

 

Credits 

 

Further resources

SIBLINGS AUSTRALIA

 

TEDx TALKS  

Recognising Glass Children — What It Means to Be a Sibling of a Child with Special Needs

Transcript

SIBLING CARERS.

 

VIDEO PLAYED. 

DEAYSHA:  Hey Cezanne, did you have a good day at school? 

DENYSA:  Yep, a good day today.  Okay, sit down. 

DEAYSHA: Good boy. 

DENYSA:  Yes, he did go swimming, I can smell the chlorine. 

DEAYSHA: He is sometimes really happy, makes me happy when he's happy because, because he's disabled and he can't really do anything. 

DAD:  Hold the ball. 

DEAYSHA: He loves when we play with him. 

DAD:  Yeah. 

DEAYSHA: This is my big brother and he's snoring, or breathing very heavily. He is eating his wafer biscuit, they're one of the only ones that he can eat.  We have to ask him yes or no questions so like oh, do you want lasagne for dinner?  If he either does nothing which is just no, or he says yes, which is yes. He can eat but he can't eat by himself, he has to have someone by his side, he can only eat certain foods. 

DAD:   Cezanne, want us to sing a song?

DEAYSHA: Yep, we'll sing a song. 

DENYSA:  What do you want? 

DEAYSHA: He's annoyed, it’s alright. 

DENYSA:  That means he'll tired, swimming day is tired day. Here you go handsome guy. 

DEAYSHA:  Good night Cezanne. 

 

JENNY BROCKIE:  Deaysha, that's you with your brother Cezanne who is sixteen. Tell me about him, what's he like? 

DEAYSHA:  Um, he can't walk, but he's, like he's usually very happy.

JENNY BROCKIE:  How do you get on with him? 

DEAYSHA: Um, really good, yeah.  When I annoy him and talk a lot, he gets very annoyed. 

JENNY BROCKIE:  What's sort of things do you do for him at home? 

DEAYSHA:   I make his biscuits, I make his afternoon tea and sometimes I make his porridge in the morning. 

JENNY BROCKIE:  What's he like when he's really cranky? 

DEAYSHA: Um, he is, um, it's, it's hard sometimes, yeah. 

JENNY BROCKIE:  Why, how is it hard? 

DEAYSHA: Um, because, because he's like usually banging his head or something like that, yeah, and it's scary to watch. 

JENNY BROCKIE:  How, how does he affect the rest of the family and what the rest of the family does? 

DEAYSHA: Sometimes when he's grumpy or cranky we can't go anywhere so we just have to stay home and do nothing. 

JENNY BROCKIE:  What are the things you find hardest? 

DEAYSHA: He, um, has, when he has seizures.

JENNY BROCKIE:  Is it scary when that happens? 

DEAYSHA: A little bit because it happens like nearly every day. 

JENNY BROCKIE:  Your mum Denysa is here.  Denysa, tell me about Cezanne's condition, what does he have? 

DENYSA:  So he's got something that's called Sturge Weber Syndrome, he was born with brain damage. 

JENNY BROCKIE:  And how does that affect him? 

DENYSA:  He has epilepsy so he has seizures most days, he is blind as well. He, well, around the age of ten he also had a stroke which affected the left side of his body.

JENNY BROCKIE:  Now he's the eldest? 

DENYSA:  Yes. 

JENNY BROCKIE:  So your other kids have only ever really known him like that? 

DENYSA:  Yes. 

JENNY BROCKIE:  Has it always seemed normal for you, Deaysha? 

DEAYSHA: Yep. 

JENNY BROCKIE:  Denysa what, from your point of view, what are Cezanne's most challenging behaviours at home? 

DENYSA:  So he's always sort of had self-harming type behaviour where he'll hit himself, like smack himself in the head.  So always hit into the wall, he's put numerous holes in our walls around every home of our house. Yeah, he's smashed his face so hard that he has a missing tooth, he chipped his tooth out, he has scars on his head from years and years of hitting his head on the ground.

JENNY BROCKIE:  How do you think all of it affects family life, your family life? 

DENYSA:  Affects it big time. I think one of the biggest things as a family is the isolation part. Not being able to just, I don't know, be that normal family, I suppose, that we can just go and do things. You know, if people invite us over for the weekend, you know, or come out for dinner tomorrow night, we're oh, yeah, got to let us know in advance.  We always feel like we have to be prepared.

JENNY BROCKIE:  And how would you describe his personality? 

DENYSA:  He's a cheeky guy, he's pretty cheeky. 

DEAYSHA: Yeah. 

DENYSA:  I think he's really, really smart and super active.  Even though he can't do much, like when he was younger he was very physically able.  He would climb six foot fences and get over fences and run away. One of the special schools he was at purposefully had fencing built because he was such an escape artist.  He's a cool little dude, I really like his personality, yeah. 

JENNY BROCKIE:  Deaysha, who gets the most attention in the family do you think of all the kids? 

DEAYSHA: Cezanne and my little sister. 

JENNY BROCKIE:  How old is your little sister? 

DEAYSHA: She's two. 

JENNY BROCKIE:  Is that fair mum do you think? 

DENYSA:  Yeah, probably I think so, yeah. 

JENNY BROCKIE:  Luke, you're 23, you have a severely autistic sister Olivia who's two years younger. What was your childhood like? 

LUKE:  Hectic would be a real good way to describe it. I didn't sort of realise there was anything wrong with her when I was younger and it's kind of going to school that you go oh, this isn't normal for everyone else.  You know, you don't get up in the morning and, you know, you've got to clean up your sister's room because she's smeared poo on the walls or you've got to clean up the nappy that she's ripped off in the middle of the night and ripped up and thrown everywhere and shoved under the door. You know, and like inviting friends across, it's like just so you know, she will run naked through the house at some point. This is not, this is not a negotiation, it's going to happen, you know, and they're like okay, yeah, sure. 

JENNY BROCKIE:  And how comfortable were you with saying that to your friends? 

LUKE:  I was actually really fine about it and I think it's got to do with my parents.  They never hid my sister, we're going to take her out, you know, we're going to take her to the shops and, you know, she's going to take food out of people's hands and eat it and we're going to apologise and we're going to move on with our lives, you know?  They've always been sort of very strong advocates like she is still a person and she's not going to be ignored. 

JENNY BROCKIE:  Tell me a bit more about her condition and how it affects her? 

LUKE:  So she has a mental disability, so she's completely physically able but she's got autism, so she has got a lot of autistic traits that are really difficult to manage, lots of really challenging behaviours. I really related to the self-harm. 

DENYSA:  Yeah. 

LUKE:  Because she has scars on her hand, really big like welts from she bites herself a lot and then she'll hit her head with her hand or she'll put holes in the wall too. 

JENNY BROCKIE:  And you're only two years older, I mean what was that like for you growing up with that? 

LUKE:  Ah, intense.  You know, you don't get a lot of sleep being someone, a sibling that has, you know, someone with severe autism. You know, she'd be up at one, two, three in the morning, you know, just making noise.

JENNY BROCKIE:  What's she like as a person? 

LUKE:  When she has a good day, she is the most beautiful person you've ever met. You know, she's adorable, she has the most brilliant smile and she'll look at you and she'll, you know, she'll give you the this big smile and she'll come and give you a kiss and a hug and she's also super cheeky. But then, yeah, the days when she's badder, you know, it's a completely different thing. 

JENNY BROCKIE:  Yeah, and she'd run away, she was an absconder again? 

LUKE:  Oh, yeah, big time. We have fences that are like ten feet high and they've got like an incline with like mesh that you can't get her fingers through because she could get out in the middle of night and you'd have a policeman come and knocking on the door but she stopped being quite as energy intense but the behaviours didn't go away but, you know, rather than absconding she would be violent instead which was really, you know, intense. She's, um, sent people to hospital with concussions before from head-butting them really powerfully, you know, and breaking glass in the back of the bus.

JENNY BROCKIE:  So quite violent? 

LUKE:  Yeah, and you know, there was one day where she, and this was towards the end before she stopped living with us, she was getting carers constantly coming through the house, new ones each day because we couldn't get consistent people, and one day she just lost it. She broke the coffee table, had the coffee table leg, was trying to, you know, attack the carer, broke a window and the carer locked herself in the study because she was so terrified.

JENNY BROCKIE:  How did all of that affect you as a family? 

LUKE:  It was hard, you know, it's stressful. You know, your parents are stressed the entire time and you can sense the tension all the time because everyone's so tired and everyone's on edge and there's never just a break, you know?

JENNY BROCKIE:  You ran away when you were sixteen, didn't you? 

LUKE:  Yeah. 

JENNY BROCKIE:  Tell us about that? 

LUKE:  Um, so my parents were splitting up at the time and I was about sixteen and, you know, fairly depressed and you know, it had gotten to this point where I couldn't handle all this stuff anymore. You know, my family is falling apart, my sister is so stressful and just one day I just didn't come back home and they were calling and, you know, I just wasn't answering and I was just like I can't do it anymore.  That was a really tough year for me in general because I skipped a lot of school that year too, it was kind of just, yeah, that point where I think my parents finally realised like he, you know, really needs help, we can't handle these things any more on our own. 

JENNY BROCKIE:  Yeah, Trudy, you're Luke's mum, what was it like? 

TRUDY:  In hindsight, you could see how much it took out of you but while you're in it you just have to manage. You don't have an option, you don't have a choice, you do it. It's, you know. 

JENNY BROCKIE:  What was it like for you juggling Olivia's needs and knowing what Luke was going through as well? 

TRUDY:  I always tried to make time for Luke. You can ask that but I was well aware of that. One of the silly things I did, I read to Luke at bed time until he was about sixteen years old or something. He enjoyed singing so we encouraged that.  You know, we enrolled him into scouts so that he could get some time away. He played tennis so that you could learn to give a separate space so Luke had his own space. You know, we encouraged him to have his friends over, you know, and he would say, I could see some of his friends were awkward with Olivia, I could see some of them couldn't handle it and I said to him okay, let's do this.  The friends that are, the people that visit with you, the ones who are comfortable and can accept Olivia, those are your friends. The ones who come, they tease her, they ignore her, those are your colleagues and your acquaintances and you don't need to bring them back any more.

JENNY BROCKIE:  Did you make decisions about friends like that? 

LUKE: Honestly I just didn't think anything of it. My perspective was, you know, there's my sister and if you don't like it, too bad.

JENNY BROCKIE:  Denysa, I noticed you were nodding when you were listening to some of that. Why, what did you relate to? 

DENYSA:  Just in terms of I've told my, I've got an older son who is thirteen and I can remember saying that to him with his friends. The ones that, you know, that accept Cezanne and are good around him, those are your real friends. The ones that may mock you or tease you or tease your brother, those aren't, you know, those aren't your friends so.

JENNY BROCKIE:  Jodie, your older brother is here, Andrew, hi Andrew? 

ANDREW:  Hello. 

JENNY BROCKIE:  Nice to meet you both. What was it like for you two growing up with Andrew with Downs Syndrome? 

JODIE:  We were like twins.  We were together all the time, all the time the two of us. We had our own secret little language so mum would go what does he want and I'd have to ask him and I'd tell her what he, and she goes what is he saying?  What is he saying now? You know, like yeah, so…

JENNY BROCKIE:  And what sort of things would you do together? 

JODIE:  Pretty much anything. I was really lucky.  When I was young a girl who was the same age as I was moved next door to us. We've been through school and everything, she also had a brother with a disability so we've been best friends forever, forever.  So we've been each other's support which has been really, really great as kids. 

JENNY BROCKIE:  And you and Andrew are very close, yeah? 

JODIE:  Very, very close, yeah. 

JENNY BROCKIE:  What's she like as a sister Andrew? 

ANDREW:  Oh, she's good 

JENNY BROCKIE:  What sort of things did you two do together growing up? 

ANDREW:  We go swimming, I was a little boy and, um…

JENNY BROCKIE:  Just lots of stuff, yeah? 

ANDREW:  Yeah, lots of stuff.

JENNY BROCKIE:  Jodie, you got into fights sometimes defending Andrew, didn't you? Can you tell us about that? 

JODIE:  Yeah, if kids started picking on him, you know, I used to have a couple of punch ups with the boys then. You know, because I was …

JENNY BROCKIE:  What sort of punch ups with the boys? 

JODIE:  Oh yeah, well we used to, yeah, one kid I broke his nose once because he was bullying Andrew so I just punched him in the face. 

JENNY BROCKIE:  He was bullying Andrew? 

JODIE:  I was six and I punched him in the face and broke his nose so. 

JENNY BROCKIE:  You wouldn't remember that right, because you would have been …

ANDREW:  Yeah I remember 

JENNY BROCKIE:  You remember that? 

ANDREW:  Yeah. 

JODIE:  Yeah. 

JENNY BROCKIE:  What did you think about Jodie sticking up for you like that? 

ANDREW:  Because she's my sister. 

JENNY BROCKIE:  She's your sister, yeah. 

ANDREW:  Yeah. 

JENNY BROCKIE:  That's what sisters do, right?  Jodie, what about your parents?  What was it like with them? 

JODIE:  Um, they were usually really busy with work and things like that. So a lot of the time I think Andrew got most of the attention.  I do have an older sister as well who doesn't have anything to do with Andrew's care now.

JENNY BROCKIE:  And do you think Andrew got support from your parents? 

JODIE:  Yeah, I think he got, well especially from my mum. 

JENNY BROCKIE:  What about your dad?  My dad didn't want to bring him home so mum had to fight to bring him home from the hospital. Dad would have preferred to put him straight into an institution which is I think what the doctors kind of suggested back then. 

  

VIDEO PLAYED.

 

SARAH:  Days are pretty tight. It's like having a child again, you know, forever. Good morning, time to wake up darling. When my father died of lung cancer I took over the role of caring for disabled sister. 

JO:  Morning. 

SARAH:  Morning. Life became very different from a mother of two children, working full time job.  Alright, you're ready? It's the longest glass of milk ever. Once she's finished her breakfast she heads off into her bathroom and brushes her teeth and then I'll give her a shower and arms up.

Pull out what she's going to wear for the day and help her get dressed. Trying to keep her as independent as possible so she does what she can on her own and I just help with the bits that she can't do.

Jo goes to a day program at Marsfield and they are awesome at engaging her in different activities. So she goes five days a week, it's a six hour period of time through the day that she's there which allows me to work. 

I work from home so I work full time.  For me I need to try and be finished by the time she gets home which can be any time after 3.  Hello darling.

JO: Hello.

SARAH:  She'll often sit and play on her Wee, she plays tennis and a couple of games on the Wee which she loves. She does go through clothing so there's on average a load of washing a day, so again that's like having a very young child or a baby with nappies, cleaning up after her and sweeping the floors because she is messy and that's just the way of the disability. There's nothing you can do about that. I look after her all the time since our father died. I think as a sister, you have to do what you have to do for your family. 

You do love me? You do love me!

 

JENNY BROCKIE:  Sarah, that's a pretty typical day for you and your sister Jo, your younger sister.  How long has she been living with you? 

SARAH:  I’ve been living with her for four and a half years since our dad died.

JENNY BROCKIE:  So you moved in? 

SARAH:  I moved into her home. 

JENNY BROCKIE:  You have two older brothers.  Did you expect to be her carer once your dad died? 

SARAH:  Yeah, yeah, I think I've known since I was fifteen that that would be my job. 

JENNY BROCKIE:  How did you know that? 

SARAH:  My mother left when I was fifteen and over, it was fairly quickly obvious that she wasn't going to take on that role or do anything for Jo and didn't.  So dad did the job for thirty years and through that time it was just me saying to him I'll do it, so he made arrangements so we could make it work. 

JENNY BROCKIE:  So you just grew up with that expectation? 

SARAH:  I think so, yeah. 

JENNY BROCKIE:  Tell me about Jo's condition? 

SARAH:  Jo has an ailment called Arthrogryposis, which I understand is very rare. So that's physical deformity, club feet, she's got, she's twisted in the hip so she's very small and very unable to do things but she's also brain damaged so she's mentally like a four year old really I think, and she has epilepsy. 

JENNY BROCKIE:  You were eight when she was born? 

SARAH:  Yeah. 

JENNY BROCKIE:  What were you told when she arrived? 

SARAH:  Um, my parents brought her home and basically, well they told us they were bringing her home to die so she wasn't expected to live and she is still here.

JENNY BROCKIE:  So that was the expectation, how old is she? 

SARAH:  She's 42, so she's going to outlive us all I think, yeah. 

JENNY BROCKIE:  Yeah, so that was the expectation?  What effect did her arrival have on your life as an eight year old, do you remember? 

SARAH:  Yeah, pretty much everything stopped. There was no extracurricular stuff. 

JENNY BROCKIE:  Going out? 

SARAH:  Yeah, no, there was none, there was just none of that.

JENNY BROCKIE:  What was it like for you as a teenager having a disabled sibling? 

SARAH:  Um, I was expected to take her anywhere I went. So if I went to hang up at the shops on a Thursday night, as teenagers do, and got up to things like, you know, smoking when you weren't supposed to, I had to take her with me and so we had to teach her not to tell mum and dad that we were smoking, obviously.

JENNY BROCKIE:  And did she do that, did she…

SARAH:  She never, ever dobbed on any of us. 

JENNY BROCKIE:  She knew what was in her interests? 

SARAH:  Probably, yeah, yeah. 

JENNY BROCKIE:  So just going back to how your parents coped, what happened? 

SARAH:  I genuinely don't think my mother could cope. I think she, they were children of the '50's so I think she married the naval officer, she thought she was going to travel the world and do dinner parties and she ended up with four children, which I don't think she ever really wanted, and realised that the children muddied the waters, but then she had this child that wasn't a perfect child that dribbled and, you know, you had to feed her and she took up everything, I just don't think my mother could cope which is why she was really gone by the time my sister was about eight. 

JENNY BROCKIE:  Did you ever angry about it? 

SARAH:  Yeah, my mum died four years ago and it's only really in the last three years that I've actually gone, you know what, and she couldn't cope.  She did the best she could and that was all she could offer and I don't need to be angry any more.  But right up until then I was always angry with her.

JENNY BROCKIE:  Angry with your mum? 

SARAH:  Yeah. 

JENNY BROCKIE:  What about angry with Jo, were you ever angry with her? 

SARAH:  Oh no, no, it's not her fault. She can't, she’s born that way, it's not her fault, no, not at all. 

JENNY BROCKIE:  So you never got frustrated as a kid? 

SARAH:  Oh God yeah.  Frustrated with her? 

JENNY BROCKIE:   Yeah, yeah. 

SARAH:  Frustrated with her, yes, constantly. You get these levels of frustration and she doesn't stop, she can be relentless. 

JENNY BROCKIE:  What about you Luke?  I mean did you just get to a point where you were…

LUKE:  Oh yeah. It's, you know, sometimes you want to pull your hair out because you're like what do you want?  What am I doing wrong? What's this today?  What, what have we done to upset you? What do you want? What do you need and, you know, it's constant. It's this thing of constant like balancing act and trying to fit your needs with their needs and obviously you're like I want to do this and you can't.

JENNY BROCKIE:  Sarah, you had a separate life.  Once you left home you had a separate life for almost thirty years? 

SARAH:  I did. 

JENNY BROCKIE:  While your dad looked after Jo. How much has your life changed in the last four and a half years since you've moved, because you moved into the family home with her when your dad died with your husband? 

SARAH:  Husband and my son. 

JENNY BROCKIE:  And your son who is how old? 

SARAH:  18. 

JENNY BROCKIE:  Okay, so how much has your family's life changed in those four and a half years? 

SARAH:  Oh, every aspect of it has changed.  I had two children, we were living in a home in Canberra, I had a full time job, my husband had a job, we were doing pretty well. You know, nice world.  I had to pack all up that and move to Sydney, we left our daughter behind, she's still in Canberra, you know, I lost my hair because I was so stressed about leaving my daughter behind so, yeah, everything changed.

JENNY BROCKIE:  So what's it like for you?  What has that been like for you and for your family? 

SARAH:  It's hard, it is hard. I know you're not supposed to say that, I know that's not the politically correct thing but it's a job and it's a hard job to do sometimes and …

JENNY BROCKIE:  And you've got a full time job that you do from home? 

SARAH:  And I have a full time job, yeah, which I'm very lucky that I can do that from home and my employer has been extremely supportive.  So I know how lucky I am, but yeah, it's hard. 

JENNY BROCKIE:  Jodie, tell us about your living arrangements with Andrew? 

JODIE:  Okay, so Andrew was living in a residential.  He moved out the same year as I moved out, the whole twin thing.  So mum was devastated but Andrew went and lived in the residential and as his mobility ended up being a problem they decided that they could only do the mental disability, not the physical, so they basically told mum that he had to come home. 

JENNY BROCKIE:  So what are the living arrangements now? 

JODIE:  So at that time dad had dementia, mum had multiple, she had just had breast cancer and other operations so we ended up selling both properties and moving out on to acreage and putting a second storey on a house so seven of us moved into a house. 

JENNY BROCKIE:  Seven of you? 

JODIE:  Seven all together. 

JENNY BROCKIE:  So who's there? 

JODIE:  I had my husband, my child and my niece that I've raised and then my mum and dad and Andrew.

JENNY BROCKIE:  And what's involved in caring for Andrew? 

JODIE:  Well, pretty much everything.   Andrew, he can shower himself, he can spend up to three hours in the shower at night and you can no longer have any hot water, which is very interesting in winter and he doesn't get the whole concept that you're angry him at because he just used all the water because he's saying but it's all cold, I'm only using the cold. 

JENNY BROCKIE:  Deaysha, did you say that happens with Cezanne as well? 

DEAYSHA: Yes, happens with Cezanne all the time. 

JODIE:  Yes, but there's only so much hot water in the world. 

JENNY BROCKIE:  Yes. 

JODIE:  Yeah. But Andrew can't wash clothes.  Like he'll say the basket's full, the basket's full, I don't have any singlets left, the basket's full.  And you go yes Andrew, we know, we know, you know?

JENNY BROCKIE:  How do you balance the rest of your life with this? 

JODIE:  Um, I've knocked back a job with the Police Service to start my own business at home so I can be there for Andrew. So I've changed my whole career plan around. 

JENNY BROCKIE:  Well you'd wanted to be a police officer since you were how old? 

JODIE:  Four, forever. 

JENNY BROCKIE:  What was that like for you though, having to give that up? 

JODIE:  Look, it was huge but, you know, it's kind of like well, that's what has to be done, it has to be done.

JENNY BROCKIE: Yvonne, what was it like for you growing up with your older brother Ashleigh? 

YVONNE:  So it was pretty rough in a lot of ways. My brother's disability was quite severe. He had spastic quadriplegia, he was non-verbal so he couldn't speak at all, he had severe cognitive issues and a range of kind of secondary issues that kind of spread off from that, so…

JENNY BROCKIE:  Well he had a gastric tube as well? 

YVONNE:  Yes, he had that put in when he was a child so he stopped eating at about the age of eight and everything from there on went straight into his stomach via the tube. 

JENNY BROCKIE:  And he was nearly blind as well? 

YVONNE:  Yes. 

JENNY BROCKIE:  So how did all of that affect you as a child growing up? 

YVONNE:  I suppose as a child growing up I really didn't get a lot of attention I think is the main thing. My parents were incredibly busy looking after my brother, his care needs were really severe, even from a very young age because he couldn't do anything for himself. So as a child, I very much kept to myself a lot.

JENNY BROCKIE:  There were lots of trips to hospital with your brother? 

YVONNE:  Yeah. 

JENNY BROCKIE:  That had an effect on you.  Tell us about those and what happened? 

YVONNE:  Yeah, so like I said there's a number of secondary issues that he had, one of the most common was that he would get pneumonia a lot because he couldn't control his breathing properly and so there would be a lot of rushing to the hospital in the middle of the night and I'd say he was hospitalised probably four to six times a year.

JENNY BROCKIE:  And you were often told to say goodbye to him in some of those situations? 

YVONNE:  Yeah, we'd get a call from the doctors saying something's taken a turn for the worse and we're not sure that he's going to make it so my parents would sometimes wake me up in the middle of the night and say look, we have to go to the hospital right now because essentially you need to say goodbye to your brother. This might be your last chance to ever see him and so that happened a lot. 

JENNY BROCKIE:  How old were you when that sort of thing was happening? 

YVONNE:  It's from as far back as I can remember almost.

JENNY BROCKIE:  Where did that leave you?

YVONNE:  I suppose it just, I ended up kind of numb to it because, you know, it was very distressing, you know, thinking he's going to die all the time so it kind of just got to the point where I couldn't take it on board any more. It was just too much and so I kind of became a bit numb to it.

JENNY BROCKIE:  Could you talk to your parents about how you felt? 

YVONNE:  So I did talk to my parents a bit, but the problem is of course they were quite stressed as well. I could see that my parents were just so overwhelmed with everything that I didn't want to add to what they were already suffering through and so I did keep it to myself quite a lot.  I really wanted to be a good child for them. I wanted to make their life that little bit easier, one less thing for them to worry about. I suppose I really wanted to do well in school and bring home good grades and you know, succeed in all my extra-curriculars and just be something they could be happy with when they came home.

JENNY BROCKIE:  Anyone else feel that kind of pressure? Luke, hand up, yeah? 

LUKE:  Absolutely.  Like it's this thing where your parents are so concentrated on your sibling that you're like I've got to, I've got to, you know, be the good kid. I've got to be really good and I've got to make sure that I'm not being a pain for them because they don't have time for you to be a pain and to look after that and deal with that.

JENNY BROCKIE:  Anyone else feel that kind of pressure? Sarah? 

SARAH:  Yeah, it was more a sense of, you know, you can't complain because you've got nothing to complain about so don't complain.  And if you did, you know, you were worried that people would say well, you know, why would you worry about that when your sister's like this? So yeah, yeah, exactly, yeah. 

JENNY BROCKIE:  Yvonne, what were you like as a teenager? 

YVONNE:  I think my mother would describe it as moody, like all teenagers are, especially teenage girls, I was very emotionally volatile but I suppose the difference was that having this and also having a lot of stress at home and this desire to do well, I definitely, it definitely hit me very hard.

JENNY BROCKIE:  And how did that manifest itself?  What sort of things were you doing? 

YVONNE:  At a certain point I started self-harming as well as kind of a way to cope with it. 

JENNY BROCKIE:  How bad did all that get? 

YVONNE:  It got pretty bad. So yeah, it kind of just started off with kind of, what you might describe as lower end self-harm in the form of cutting, but as I got older I definitely started having a lot more difficulties and particularly when it came to year 11 and 12, you know, as a teenager you feel pressure to perform anyway but I had this internal pressure as well and it got overwhelming. It got to be far too much and then I just didn't know what I was doing or how I could cope and I started having suicidal thoughts at that stage and it was at that point that I realised it's just, it's too hard and effectively I broke down crying in front of my mother one time and just told her I can't do this anymore. I can't keep up with everything and you know, I'm just struggling, I can't do it.

JENNY BROCKIE:  How were your parents through all of that? 

YVONNE:  So my mum has found out that I was having, that I had depression when I was thirteen because she saw my self-harm, she saw cuts on my stomach when I was getting changed one day and confronted me about it. She was understandably horrified, you know, she hadn't really thought that I was having any problems because of course I'd done everything I could to hide it.

JENNY BROCKIE:  And how did you get through that stage? 

YVONNE:  My mother, she took me to the doctor and went to a psychologist, and that was tremendously effective. That was the first time that I really felt that the issue, that we were getting on top of the issue.  That I wasn't being talked down to any more, I was treated as an adult.

 

VIDEO PLAYED.

 

MUM:  Hi Jason, how are you?  Oh look at that, who's that? 

JESS: Mum and dad are here. 

MUM:  Hey, oh missed you Jason, give me a hug, give me a hug. Big hug. 

JESS: Jason moved out from home about seven years ago. 

MUM:  What have you been doing Jason? Want to go to the lounge room, the kitchen, yeah? 

JESS: Let Jason push himself dad. Wipe up your spill Jase, it's a bit wet. You dab it, like that. 

JASON:  Down there. 

JESS:  Dab it. At the moment I'm visiting Jason probably every, every three or four weeks, probably more, every month, just at the moment with work and my other commitments. Did he give you extra socks at night? 

DAD:  Yeah, keep yourself warm. 

JESS: Double socks? 

MUM: Did you snore? 

JASON:  I did. 

JESS:  Do you wake the whole house at night with your snoring? 

JASON: Yeah, want a KitKat. 

JESS:  He always talks about his KitKat but I never get them. All talk. Where's my KitKat? I think since Jason's been living out of home we've seen like progressive improvements in his communication, he has a bit more expressiveness in the way he speaks I think. 

Do you miss me when I'm not here? 

JASON:  Miss you. 

JESS:  He's stable where he lives and he seems to enjoy it and he seems well looked after. Today I've seen Jason as really lovely. He was really happy so that always make me happy.

Okay, Bye bye.  See you. 

JESS:  Yeah, but you always feel like a little bit guilty leaving him behind a bit.  

 

 

JENNY BROCKIE:  Jess, Jason has lived in supported accommodation for the past seven years, who does he live with? 

JESS:  So he lives with three other boys at the moment.

JENNY BROCKIE:  And they have a full time carer there? 

JESS:  Um, they, Jason is the one who needs the full time carer. 

JENNY BROCKIE:  What condition does Jason have? 

JESS:  He has a condition called Pelizaeus-Merzbacher Disease, so he can't communicate very well, he can't walk, he's always had to use a wheelchair. He's got good upper mobility, he's probably got the cognitive level of probably a four year old, five year old.

JENNY BROCKIE:  Now he's 32 which really surprised me, he doesn't like 32. He's six years older than you, how did your family react to him having a disability? 

JESS:  Um, so it's actually genetic disability so my uncle has the same condition, but they were in Malaysia.  So my parents migrated here in the '70's, and they sort of had a better idea of the disability and they realised it was more of a biological thing as opposed to sort of a cultural thing. So previously like with my uncle they would think of that was a curse, like it was more of a spiritual thing as opposed to being purely genetic. 

JENNY BROCKIE:  Your parents have run restaurants for more than twenty five years. You're their only other child so I'm putting those two things together and I'm thinking how much did you care for Jason when he was growing up? 

JESS:  Yeah, so probably the age of thirteen I started to take on a lot of the caring roles.

JENNY BROCKIE:  So what did that mean for you basically? 

JESS:  So pretty much everything, like feeding him, bathing him, taking him to the toilet, um, you know, putting on a game for him so he had something enjoyable to do. 

JENNY BROCKIE:  What was that like for you growing up in the family? 

JESS:  It was pretty stressful because I kind of went through a similar experience to Yvonne when I was in grade 10, I think. 

JENNY BROCKIE:  What, depression or…? 

JESS:  I developed an eating disorder so I actually dropped to 42 kilograms.  I'm normally 53, if I'm lucky. 

JENNY BROCKIE:  So you dropped how many kilograms? 

JESS:  I got to 42. I think it was just my way of dealing with things. Like because I don't think my parents know about this so they might know about it now, but yeah, I think I was just so stressed and I was internalising everything and putting on this face to go to school, to like care for my brother, for my parents to think that I was okay didn't think I had any control.  So the only thing I could control was my eating so I just, I don't know, I just stopped eating or I would…

JENNY BROCKIE:  How long did that go on for? 

JESS:  Um, probably, probably eighteen months.

JENNY BROCKIE:  How did you get out of that? 

JESS:  One summer I came back from school and a friend of mine just said like Jess, you don't look well, like what's going on? Yeah, and that was a bit of a wakeup call I think. I don't really know how my parents didn't notice, if it was baggy uniforms or something but …

JENNY BROCKIE:  Or that they were preoccupied? 

JESS:  Or they were preoccupied, yeah. 

JENNY BROCKIE:  Dealing with the situation? 

JESS:  Yeah, probably, like.

JENNY BROCKIE:  Do they know now? 

JESS:  Probably after they watch the show. 

JENNY BROCKIE:  Yes, well that's what I'm thinking, yeah, that's what I'm thinking. So you haven't spoken to them about it at all? 

JESS:  No. 

JENNY BROCKIE:  Why do you think that is? 

JESS:  Well because they already feel so much guilt, you know, with Jason, like the last thing they want is to know that it affected me that much.  

JENNY BROCKIE:  Who made the decision for Jason to go into the group home? Was that something he wanted? Was it something the family decided? 

JESS:  It was more of a family decision. So it was when I was nineteen, he would have been twenty six, if my maths is right, yeah, it was just getting too much. Like I think my mum and dad, they were still working in their restaurant, doing like 70 hour weeks, I was at uni, I'd have to do all the caring for him, go to uni, come back, do more caring and then at night I'd study. I didn't really see that I would be happy being a full time carer for him and stopping my career. So it was hard for the first probably three years, but I think now it's been a good decision for us. 

JENNY BROCKIE:  How did he react? 

JESS:  Um, he wasn't happy with it in the beginning. I think he, he didn't understand like why he was moving from home, but now he's happy.

JENNY BROCKIE:  And you, how's it been for you? 

JESS:  It's been good.  The last like five years I think I've been able to do all the things that I haven't really had time for growing up, you know, we've travelled heaps, it's sort of, it's shaped my career path as well, I'm an occupational therapist so kind of fits. 

JENNY BROCKIE:  Luke, where's Olivia living? 

LUKE:  So she lives in a full time accommodation as well in Mt Evelyn which is been half an hour away from where we live. And I have to say it was one of the best things that probably happened because I think from about the age of sixteen I started telling my parents she needs to go and it wasn't, you know, a spiteful thing, but it was a thing where I could see how much it was not only affecting me but it was affecting my parents and I kept saying to them this can't go on forever. Why are you denying this? This is exhausting and one of the things I made very clear early on was that I wasn't going to be her carer.

Just because I've seen older people that care for their siblings and their life ends in a way for some of them where they just, their sibling is the only thing that happens and I've watched that and I went I can't do that. It's, you know, it's just, I don't want that terror of being confined to this life forever. It's, it's terrifying and my parents were still going and you know, mum had had, what was it?  It was two things, it was like a stroke. 

TRUDY:  I had a couple of TI, I had two mini strokes and then what tipped it was we haven't slept for nineteen years.  We had a baby for nineteen years and I was driving one day and I fell asleep at the wheel and we drove off the road. Luckily for me I drove off a road that had an embankment and so the car went uphill as opposed to…

JENNY BROCKIE:  Down? 

TRUDY:  Down, and then I realised okay, you don't have a choice. I hadn't wanted to put her in because of all the horrific stories coming out about abuse in those homes and Olivia's a perfect target.  So she's non-verbal, because she can't control her physical things she's on medication to stop her periods, she is on the pill as well, she's a young female and so she was absolutely vulnerable and if anything happened to her, you wouldn't know except by her behaviour and the thought of her going in there and being abused, and yeah, I knew what Luke was saying but I was sort of like okay, I need to do everything I could do so that when I couldn't do it any more I knew I did everything.

JENNY BROCKIE:  Sarah, I just wonder how you react listening to what Luke was saying about not wanting to be the sibling that's looking, that's the carer, you know, going on into his adult life? 

SARAH:  Well partly he's not wrong so I mean…

LUKE:  Honestly, it's from your generation that I've seen that. 

SARAH:  Yeah, absolutely. 

LUKE:   And that's where I've gained my experiences from so I was like sitting there fully aware I'm blabbing about it right to your face. 

SARAH:  No, no, no, absolutely, because you know, there was I with, you know, growing children and thinking they're going to go and you know, that's what you expects to happen, but realistically that's never going to happen for me.  I've got a child that I will care for as long as I physically am able to do it for much the same reasons as you mentioned, just to protect her. My sister is extremely vulnerable, she trusts absolutely everybody, doesn't really understand. So it's that thing, I can't retire, I can't plan. 

JENNY BROCKIE:  So is it fear of that that's stopping you from…

SARAH:  No, it's more that it's what I told my father I would do so it's just that as a family…

JENNY BROCKIE:  Carrying out his wishes? 

SARAH:  As a family that's what we think is best for her for now. 

JENNY BROCKIE:  Trudy, what was it like for when you had to, when you finally did make that decision to put Olivia in care? 

TRUDY:  I mean there was a growing thought that I would have to do it, and I understood the impact it was having for Luke. I never wanted to make Luke the third parent, never did, and I tried to avoid that as much as possible. 

JENNY BROCKIE:  Yvonne, your only brother Ashleigh died three years ago, what's life been like for you since then? 

YVONNE:  So since my brother died life has been oddly normal. It's kind of this weird thing of, yeah, growing up in that situation, there are a lot of things I couldn't or didn't do.  So you know, actually going and travelling overseas has been a wonderful development and just time. It's so much free time that I've never had before in my life. My brother died when I was about halfway through my law degree and until that point I had had some caring responsibilities and that would eat up a lot of time, and so I was getting through university. Like I was doing okay, but after my brother died I actually didn't know what to do with all the free time and so I really did put it into my study. I've just finished my law degree and I've come out with an excellent GP A, excellent extra-curriculars, but it all came after my brother died just because I had so much more time that I couldn't have had otherwise. 

JENNY BROCKIE:  And how did you react to that? How have you reacted to that? 

YVONNE:  Yeah, so I mean obviously it's great to actually feel like I'm succeeding because you don't get anyone saying oh, yes, you've one best carer of the week you know, it's just the thing you do. And so on that level it was really gratifying but at the same time I couldn't help but feel a bit guilty about it because obviously my success, it feels like to me has come at the expense of my brother dying and that feels horrible. It feels horrible to say, you know, suddenly I can do so much and it's because he was holding me back in a way and because he's my brother it feels like a terrible thing to say but the reality is that it's true. 

JENNY BROCKIE:  How have you dealt with that?

YVONNE:  I do, you know, feel guilty.  But you know, I suppose it's this thing is an on-going process for me of trying to deal with that and I think it's that thing time heals all wounds. 

JENNY BROCKIE:  Luke, you work in the disability sector? 

LUKE I do. 

JENNY BROCKIE:  Part-time?

LUKE:  Yeah. 

JENNY BROCKIE:  Why did you choose that? 

LUKE:  I don't know that I'm ever going to fully escape that and I don't know that I want to because I'm like that's still such a part of my identity and it's a way of giving back to the community that gave stuff to my family as well. You know, we had carers come through and all I can think of is what better way to help out other people than to give back.

JENNY BROCKIE:  How do you see your future now? 

LUKE:  Well now that my sister's in care I feel a weight off my shoulders in terms of responsibility. Something that I now know I'm like if I want to pursue something, I can do that knowing that she will still be looked after and cared for and I know that eventually as I get older I will have to take over some responsibilities because we haven't relinquished her entirely to the government. You know, I will have to take some of those things on board and maybe some aspects of my life I can't necessarily pursue.  Like you know, I'm like alright if I'd like to live overseas I won't be able to do that forever.

JENNY BROCKIE:  Sarah, how do you see your future? 

SARAH:  Living in my sister's home until I can't do it any more, basically, yeah. We talk about retirement but it's a bit of a pipe dream and we know that but…

JENNY BROCKIE:  Why is it a pipe dream?

SARAH:  Well, I hate to say it but for us it's, she dies and then we can go on, or I physically can't do what I do any more and then we have to look at alternate accommodation, so both of those are pretty horrendous outcomes so it's a pipe dream, really. 

JENNY BROCKIE:  So you can't see any prospect of retirement? 

SARAH:  Doesn't stop us talking about it, doesn't stop us dreaming about it, but yeah. 

JENNY BROCKIE:  Jess, how do you feel about having kids of your own? 

JESS:  Um, not any time soon, um, maybe one day. 

JENNY BROCKIE:  Have you been tested? 

JESS:  Yes. 

JENNY BROCKIE:  So see if he carry this…? 

JESS:  I'm not a carrier which has been a giant weight off my shoulders.  I'll probably still get tested again just be sure.

JENNY BROCKIE:  Luke, do you think about having kids? 

LUKE:  I'm terrified of the possibility, seeing what it does to so many other people, it's that thing of could I do that? My mum had two strokes from caring for my sister and I'm like am I prepared to go through that? I don't know and once again I mean it's that guilt of are you that selfish? And I'm like is it selfish of me to think that way but you know, I just, it's scary.

JENNY BROCKIE:  Yvonne, what have you learnt do you think growing up with a sibling with a disability? 

YVONNE:   I think the main thing for me is that I was really living, you know, an alternative life to most people. I saw, you know, something that most people would never see and so for me it really taught me that you can't just judge people from looking at them. You have no idea what is going on in their lives and so you know, without wanting to, you know, talk too highly of myself, you know, I think it has made me more empathetic and non-judgmental of other people because any time I feel negatively towards someone, I just go I don't know what they're going through. Like they could be just like me and I would never have any idea and so I think that's something that has really carried through. 

JENNY BROCKIE:  Thanks so much for joining us, thank you everybody for joining us tonight, it's been a really interesting conversation, great to have you here and that is all we have time for here but let's keep talking on Twitter and on Facebook. Thanks so much for everyone, thank you, very good.