Episode 2 – Lean on Me

Speaker 1:                        Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Join presenters, Dr. Lisa Interligi and Kristine Christopoulos and their guests on sharing experiences, information and support ideas to help children with disabilities flourish. Loop Me In is brought to you weekly on platforms like Apple Podcast, Spotify and Stitcher, to name a few. You can learn more, connect with the Loop Me In community and listen to more episodes on our website loop-me-in.com.au.

Lisa Interligi:                    Okay. So I’d just like to welcome [Bindi 00:00:46] and Kate today to our podcast. And really, we’re very excited to have you here. And I know that you both, and also Kristine have got some friendships that go back some way and that you have children that have grown up together in some ways. And so really would like to understand today from you what the value of having those friendships and that network have been, through your journey with your children.

Kristine Christ…:             I think for me, ladies, we all met when our kids were five or at prep at Katandra. And now they’re-

Kate:                                 That’s right.

Kristine Christ…:             … 21, almost hitting 22. So it’s a huge amount of time that we’ve gone back and forth with each other and gone on the journey together.

Kate:                                 Yeah, I think that’s right. I think Amy and Alice and Matthew were all at the same school. So we’ve had many, many years of schooling, birthday parties, everything in between. Yeah.

Bindi:                                Yeah. And we’ve actually, if you think about it, we’ve had a similar path in some ways that they started at primary school together, we all selected the same primary school. They went to the same secondary school. That didn’t work out for all three of them.

Kristine Christ…:             Yeah, that’s true actually.

Bindi:                                And they moved to a different secondary setting. And so we actually, in terms of that, it was a similar sort of path that they undertook. And now they’ve obviously all left school, but we’ve kept in touch.

Kristine Christ…:             Can you tell us a little bit about Alice, talk to us a little bit about Alice and what her diagnoses?

Bindi:                                Sure. So Alice is 20. She is autistic, profoundly deaf with an intellectual disability. She sits in between two, I have two boys, who sit either side. One is 23 and one is 15. She’s a bubbly effervescent, busy girl. Doesn’t stop, has energy plus-plus, and very personable, loves people. And always wants to be out and about doing things.

Lisa Interligi:                    Does she give her brothers curry? Does she…

Bindi:                                She is the queen of the house and pretty much rules the roost and her brothers give into her daily. They’re very accommodating. They’ve learnt to be and they both have beautiful natures that deal with her beautifully. And doesn’t mean there aren’t many eruptions in the house and she tends to know exactly how to stir the pot, but they do know how to deal with her very, very well. Over the years, I think we’ve all become experts.

Lisa Interligi:                    How have you done that though, Bindi? I mean, it’s something that I’ve also tried with Remy, I guess, not in an overt way, but in a way that instills that sort of tolerance and the patience with Louis. I wonder how you went about it with your sons.

Bindi:                                I think, different probably for both because the older one, Sam has always had Alice in his life, so I think he… How have we done that? Look, I think it’s varied as she’s grown through the years. I think that, and it depends what’s going on at the time. I mean, Alice has had a lot of behavioral issues and has been incredibly challenging, particularly when she was younger. Lots of meltdowns and eruptions, so we had to find ways in which we could, well, keep everyone safe if she was really losing the plot, but also empower them to be able to deal with it without one of us coming running from the other end of the house. And so just talking and through talking and doing, and you learn so much. It’s really interesting, friendships were a big thing for them and always worried me, whether would they be able to keep having new people home?

Would they accept Alice? Would they not want to come back? How’s that going to play out socially for them? Because you ultimately want to create the most normal environment that you possibly can. So I was very, always on edge about that when new kids come into the house. And one day I mentioned it to one of the kids, I said, “Are you embarrassed to have friends over because of how she is?” And they both turned to me and they were like, “Embarrassed? No, not at all.” But if a friend can’t cope with how she behaves, then they shouldn’t be here.

Kristine Christ…:             Yeah.

Bindi:                                It was very, I think, we’ve been very lucky. I just, I think organically, they learned so much without actually having to teach them. I think it’s one of the bonuses. I think that I wouldn’t have said that when Alice was little and we were navigating ourselves through this world, but now I look back and I actually think we are one of the lucky ones because our boys get so much that they wouldn’t have got, if Alice wasn’t around.

Lisa Interligi:                    We feel the same way, I think.

Kristine Christ…:             Yeah. I often think about that too. And I remember us, Marilyn actually came to us a few months ago and said, someone actually asked her, they’ve just been diagnosed, their child’s got a disability. He’s four and the girl’s six. And they asked her, they said, “What was it like growing up with a brother with a disability?” And she said, “I actually didn’t really think about it until I was older. I just didn’t know any better.” They’ve only got two years apart, she said, “So I just thought it was normal.”

Lisa Interligi:                    Yeah.

Kristine Christ…:             And he was who he was. And I was the same, Bindi, when the girls changed school from primary school to high school, I was beside myself like, how are they going to make new friends? Do I just tell the parents straight away that, “Hey, when your daughter gets dropped off, she’s going to meet Matthew. And Matthew’s like this.” And it just happened. And the kids, I think, the parents tell me today that the kids were a little bit concerned when they first walked in the door, but within 10 minutes they were like, “Oh.” Yeah, he just said hi and went off and did his own thing. And yeah, it was normal.

Lisa Interligi:                    What about you, Kate?

Kate:                                 Yeah. Look in terms of the friends, very similar situation is we were definitely worried. I mean, Ethan’s friends from primary school, it was like, Amy’s just part of the furniture. She was just, in fact they loved her, there’re a lot of them still know exactly how to be with her. They’ve known her since they were, because Ethan’s the second one. So I we’ve got Ethan who’s 15 and Amy who’s 20, so he never knew anything else and his friends didn’t know anything else. With the high school ones, they don’t seem to mind. I mean, everyone, I think maybe times have changed as well. I mean, I remember when I was a kid and one of my mom’s really good friends from her childhood actually had a child with a disability or with an intellectual disability. And I remember myself, nobody explained anything and he was always kind of the odd one when we went to visit.

I don’t remember us not playing with him, but I definitely kind of… Nobody explained anything, whereas now it’s like, we say, “Oh yeah, Amy’s got an intellectual disability and this is Amy she’s Ethan’s sister,” and they’re all really good. So we also haven’t had that sense of pushback from his friends. I do think that there has been, I think Bindi and I were chatting about this yesterday, that it can be quite isolating as a family having a child with a disability because you don’t get those same kind of invitations to go camping as a family. Or we’ve got friends who absolutely love mountain biking, which we love as well, but you’ve got that awful choice. Do you go and leave Amy or do you not go or do something else or… Yeah. So that’s, I think where it gets tricky is when you are wanting to do things kind of a bit in a bigger circle.

But in terms of friends, Ethan’s friends accepting and his social life, it’s been fine. I mean, I always joke that Amy knows more people than any of us. I walk down the street and people say, “Oh hi, Amy.” And start talking to her. I’m like, “Who are you?” So she knows everybody and everybody loves her. So yeah, we’re very lucky. She’s very personable though, Amy, so I’m not surprised.

Lisa Interligi:                    Yeah. I think that helps doesn’t it when you’ve got a child that’s personable and can connect. I think that makes a difference.

Kate:                                 Yeah, absolutely. Yeah.

Lisa Interligi:                    So, through these challenges, and I think you alluded to some of them, Bindi, around behavioral issues. How have you got support from your parent network?

Bindi:                                Oh, for me, gosh, they’ve been priceless. You know, having people like Kris and Kate to talk to, we’ve all come up against challenges at different times and kids portraying something that just starts to happen and you immediately just get it, and you kind of know. I mean, I think we are very honest with each other and sometimes even when we’ve been a bit more private about issues, you kind of know when you need to give each other space and sort of work through things and then when to come forth and speak up. I think that the support is just so important. I mean, I couldn’t have done it without having people to talk to. And I actually, upon reflection, talking to different people, as having gone through this now for, she’s 20 years old and it is, it’s a journey.

We all use that word a lot, but it is, it’s a real journey. And looking back, you sort of go, “Oh gosh, we were in that space then, and that space then, and gosh, haven’t we come a long way since then.” And you can really try and make sense of it, but what was interesting is I was talking to someone the other day about how different it was for our husbands. And so we, as women, talk, I think, much more to each other openly. We have much more of, maybe the need isn’t more, but we just do it with so much more ease than our husbands. They traditionally, they’re working, well all three of us also work, but we being the homemakers and the bearing the brunt of the children, I guess, in many instances… Ross and I, we were at such different levels at different times.

And I felt that he just did not get the same benefits that I got from having friendships like this. There just wasn’t enough around. And even if there were sometimes little snippets of, we’re running a men’s group, to encourage them to go and step into that space was almost impossible. So having these connections was amazing because, I mean, I remember Kris’s husband, and John and Ross are great mates and we often meet as a family. And they connect with one another and just don’t stop talking, and we walk away from it. And I really feel that Kris and I get this much more often than they get it. So I think the importance is just, I mean, for me, I can speak for me, has just been insurmountable. I can’t imagine having done 20 years without, to be honest.

Kristine Christ…:             I agree. I remember when Matthew had an incident only, probably last year where he acted out on a carer and he’d obviously never done it before. He is not a violent kid by no means. And the first person I call, because Alice was there, was Bindi crying, going, “How do I fix this?” And she just calmed me down and said, “It’s just what happens sometimes.” And it kind of, I mean, if I rang another girlfriend that doesn’t have a special needs kid, she’d be like, “God, what…” Would not understand, and I probably wouldn’t have got anything out of it either. And I think it’s really important to have a network of friends around you that have similar… Even though our kids are so different in so many ways as well.

Kate:                                 I think it’s also to have kind of like eyes and the ears as well for each other, as well. I mean, I know that when you’re at the same programs or same school or different ones, it’s really so important to have someone you can talk to about also what’s working in a certain environment, and talk about the environment itself. I mean, I know I’ve had many conversations with what’s been working at a school or what hasn’t been working, or now, in day programs. And that’s really invaluable because the kind of the alignment between what’s happening at home and what’s happening wherever your kids, your children are, is so important and it’s different for everyone. And sometimes you don’t know if it’s just your perception, so having kind of friends to discuss that and really understand if they’re having the same thing. Just as an example, I know that Kris and I had a discussion about kind of new cultural elements that had come in, in a new place that our kids were at and how we felt it was rubbing off on them.

And it was very obvious, it had been a change since they’d left school. They were in school and then there were certainly new behaviors that came in, in the new place. There was that, I wasn’t sure if it was Amy, but then when I talked to Kris, it was like, “Ah, well maybe it’s actually the environment and they’re picking things up from the environment.” So I think having that kind of sounding board is really, really, really useful to know that you’re not the only one, because I think we can often think, it’s difficult to identify if you can’t compare and have a chat about it. So it’s been really, really useful.

Lisa Interligi:                    Yeah. And I think also that forecasting of what’s to come, when you have to make those really big decisions or you’re faced with an issue that you go, “I really just don’t know how to tackle that, to have that conversation.” I remember we were having that conversation over dinner about sex and what do you do about that? Our kids are all of that age when they’re in their twenties. It is something that, unless you’re in that position, that you wouldn’t really understand the risks or the concerns and the issues that you might have, and having that network to talk through things that are coming up is also really important.

Kate:                                 Absolutely.

Kristine Christ…:             We don’t want to go there though, do we?

Bindi:                                We need a glass of-

Kate:                                 It’s only, it’s the afternoon, we need to do that over dinner with a glass of wine. This is not a cup of tea conversation.

Lisa Interligi:                    No, but there’ll still be issues. And it is, they’re really hard to navigate. With any child, you don’t get a rule book. You certainly don’t get a rule book with somebody who’s got special needs. So, having one step ahead, having somebody out front or even who’s got a child who’s older with the same or similar conditions is really useful. And I think you’re in that position now, Kris, aren’t you? With trying to help other people who’ve got kids with similar syndrome as Matthew.

Kristine Christ…:             Yeah. And it kind of is difficult because Matthew got obviously diagnosed with his syndrome last year, so the children’s hospital now get the people to contact me. And we’ve got two girls at the moment with the same syndrome as Matthew. And it’s interesting how they’ll ring me and the kids are only two and four, and their questions are like, so what’s he doing now? Is he driving? Is he at high school? Can he read and write? And I kind of don’t want to tell them all the answers, because obviously it’s different for everyone, but there is still that grief that you get when you do know that your child’s got a disability and you kind of don’t want to know all the things they’re not going to be able to do until like… I wouldn’t have wanted to know that at 21, Matthew still needs me or someone 24 hours a day in his life. He can’t be on his own.

Bindi:                                Kris, different things stick in your mind for different parts of the journey, but Alice was one year old, she had just had her birthday and we went and saw a developmental psychologist who did a series of tests, and we had so many sessions with her. She basically came up with this report that she gave to us, that Ross and I went and listened to her deliver. And we sat there and we were speechless, we were absolutely speechless, because the report was about six pages long and contained six pages of what Alice couldn’t do and probably wouldn’t do in her life. And she was one. And we are looking at each other, and my husband doesn’t get angry at any, [crosstalk 00:20:49], he really doesn’t.

And he kind of leaned forward on his chair and he took a deep breath and he looked at this lady and he said, in these words, “Are you telling me my daughter of one, is not going to be able to write a check when she’s 18? Or are you telling me she’s not going to be able to do calculus?” And the lady across the desk said, “Ross, to be honest, she probably won’t be able to do either.” And he stood up and he goes, “This is bullshit and I’m not listening.” And he walked out. So, you talk about timing and, I understand. Kris, parents of two year old, probably don’t want to hear that or can’t.

Kristine Christ…:             Right. No. And you don’t want to tell them that.

Bindi:                                No, that’s just devastating. And I think the biggest thing is always having hope and never saying never, like you said, Kris, our mantra at our house is, what Alice can do. Whenever anyone says, “Can she?” Or, “Can Alice not do that?” No, let’s turn that around, let’s talk about what Alice can do.

Kristine Christ…:             Very important, isn’t it?

Lisa Interligi:                    I think it’s a real mindset shift though, isn’t it? That you’re so kind of, you are conditioned into thinking what they can’t do. And actually, and that sets a behavior where you protect or underestimate and don’t allow them to do things. And actually, I have to say, Louis has never let me down and I’ve always been surprised. He pulls things, I actually think he’s a fox and he hides a lot of his behavior. When he was doing swimming, for years, at Port Phillip and they used to write in his diary, Louis can swim to the end of the pool with the aid of a flotation aid. And I go, “Dude, he swims in a pool underwater like a dugong. And he comes up for air, what do you do? Why is he swimming with you with a flotation aid?” So, he has always surprised us with his capability and it is a mindset. It’s a great mindset to have, isn’t it Bindi? That focus on what you can do, and it gives them the freedom and the space to do it.

Bindi:                                Very important.

Kate:                                 I think that’s one of the, you can get kind of fixed in your mind as well, about when you are used to, I don’t know, Amy might be able to do something and you kind of don’t realize you’ve pegged it. And you’re, because you’re so used to bridging the gap, to kind of between where you would be if you’re totally neuro normative to where Amy is, and then you don’t necessarily leave that growth. And then somebody else will come in and suddenly I’ll see Amy doing something with somebody else. I’m like, “Why am I doing that for her? She’s so capable of doing it.” Because her behavior is, and you get into kind of patterns where they know also how far they can get away.

I mean, Amy’s a sly fox as well, she’ll try and get away with stuff because she just can’t be bothered, if she can. So, would she really rather somebody else goes and does something. And, I know, it’s a silly example, but get a glass of water, she always says, “Can I have some water?” It’s like, “Amy, you can get water.” Every time I have to remind her, she can go to the tap and get water. She’s been capable of that for years, but she’ll still try and get away with it.

Bindi:                                Yeah. She can. Oh, that makes me laugh, Kate. Every night in this house, every morning, if he’s here for lunch, when she asks for a glass of water, the entire family, whoever’s around, at the same time will go, “Alice, get up yourself.”

Kristine Christ…:             Yeah.

Kate:                                 Yeah. [crosstalk 00:24:56]. I remember one time we realized if she’s cluey enough to play us, then she’s cluey enough to learn the solution.

Bindi:                                That’s right.

Kate:                                 I think we learned that when she was about, I don’t know, seven or eight and we suddenly realized that she was actually playing us.

Kristine Christ…:             Yeah.

Lisa Interligi:                    So what tips could you give other people if they were starting out the journey, looking back at this lovely network of support that you’ve developed? What tips would you give other mothers and parents about setting up those networks for support?

Bindi:                                Sometimes it’s hard to reach out, sometimes those networks don’t just organically happen. I mean, I think they did for us, but I think, the three of us, if we’re talking about our friendship for all these years has been, I think that we are similar personalities and we got along. We had common interests. I think, try and find your tribe, try and find people with common… And it doesn’t necessarily have to be the same syndrome to narrow it down, because often syndromes are so limited in terms of, and our kids share so many attributes with each other that I think it’s, be kind to yourself and be kind to the people around you. But really try and extend yourself to reach out in those times that you are probably feeling like crawling into a cave. Yeah, what do you think Kate? What would be your tips for…

Kate:                                 Look, I mean, I feel that I haven’t necessarily used my network enough over the years. I got so involved in kind of my life and so kind of my head spinning and busy that sometimes I don’t feel I did use it enough. And I have definitely had times where I thought, who could I call? Who should I call? And it doesn’t necessarily occur to me that I could have called one of you guys and I mean, I’ve known you guys for years and I’m sure I could have done that. So I think it is at the point, maybe it is even, because it’s like you said with the parents who’ve got a two year old, you don’t kind of know, it reveals itself as you go through the years.

You don’t realize that it’s going to be such a long journey or how long it’s going to go on or what you’re going to come up against. So yeah, maybe it would’ve been better for me to allow myself to be more vulnerable and reach out when I needed to. Yeah. Looking back at it now, there were times I should have, it just didn’t occur to me. It’s weird. It just didn’t occur to me.

Kristine Christ…:             And I think the friendships are important too because it’s allowed our kids to still be friends, because obviously if they didn’t have us connecting, they’re not going to pick up the phone and ring Alice or Louis or Amy and say, “Hey, you want to catch up Saturday,” because they just can’t do that. So if we didn’t know each other as well as we do, they probably wouldn’t have the friendships that they have today.

Kate:                                 I think that’s really true. It hasn’t only been the kids, it’s definitely been our network that’s kind of… And what’s nice about that is that you do kind of grow. And I mean, for an example, that Amy’s been suffering with anxiety since COVID, and I had a conversation with Bindi about it and a possibility of putting her on medication. And Bindi said something which is, she’d seen Amy and she could really see how much more anxious she was. And that was so important to hear because it’s a bit like the frog thing where the water is going up and the temperature’s going up and you don’t realize the water’s going up if it’s happening gradually, but for Bindi who hadn’t seen Amy for a while and then suddenly saw her, she could see that difference.

So I think the benefit of having the longevity of friends who’ve known and seen her, seen each other’s children grow up, it really is like a village. So I think just, we do need to reach out more and make the effort to go out. And it is as much as just going out for coffee and just making, because everything needs nurturing, friendships as well as everything else.

Kristine Christ…:             Yeah. I agree with that. And I think for all of us now, when we’re talking about, they’re not even kids, but we call them kids, is what-

Kate:                                 They’re eternal kids, Kris, in some ways.

Kristine Christ…:             … what’s their future? And I think we’ve all talked about it with each other and kind of don’t want to go there, but we’re all getting older and what is the future for them? Where are they going to go? And what are they going to do? And we obviously have them all at home and we don’t want anything else, but there’s going to come a time when they are going to have to move on to something else, because we’re not going to be capable of looking after them. And I think we’re going to need it. So the friendship’s never going to go away because we’re always going to have these conversations about the future. Same as with the schools.

Bindi:                                That’s right. And I think also, us being friends as Kate, you were just saying, the kids have stayed friends because we are friends and they see each other because we are friends. And in some instances we’ve managed to construe, through good fortune, people who are carers, who connect with each other. And the kids catch up on a regular basis because of this. And I think just like us talking about needing a community of people to help us navigate the world that we live in, the kids need a community of people too. And so it’s just as important, but so much harder to do organically for the children. I know with my kids who don’t have special needs, they get to a point at grade five, grade six, they organize the stuff themselves.

They do everything themselves. They know who their friends are and what they want to do. And, “Oh mom, can Jim come over for a sleepover next weekend?” With Alice, it’s so different, she would ask to have people over and then you’d go and you invite them, it’d be a disaster. You’d be like, “Oh my God, I got two kids at the other end of the house, not talking to one another.” And so I think that they need so much help to be able to be friends, to stay friends. Their friendships are different, they can’t communicate with each other the same way, so they learn different ways to communicate. They have to be given different spaces to be able to do that. To throw Alice into a room of a hundred people where she can’t hear anybody, can’t think through, can’t…

She has no chance of making friends in that kind of space. It’s got to be quiet. You just have to allow for very different things. And you have to think about it. Kids without special needs, you don’t think about these sorts of things. There’s so much you have to think about, but it’s so important for them as well, I think, for their parents to be connected, and it helps them be connected.

Kate:                                 So true.

Lisa Interligi:                    Yeah. Well, I think that more power to you girls really, and I’ve been a beneficiary of your relationships, I think through Kris, so thank you so much. And thank you for joining us today, we really appreciate it and appreciate the honesty and obviously the love and the emotion that you have around your kids and our kids through that. So thanks very much.

Bindi:                                Thanks for having me on. It’s been, always a pleasure just to talk.

Kate:                                 Absolutely. Can we put our next coffee date in or dinner? Aren’t we due a dinner?

Kristine Christ…:             Yeah, let’s do a dinner.

Speaker 1:                        Thanks for being part of the Loop Me In community today and joining our conversation on raising children with disabilities. Join us for the next episode on some of your favorite platforms like Spotify and Apple Podcast. If you would like to support us, please recommend the Loop Me In podcast to your network of parents, carers, and providers. If you would like us to cover a topic or invite a guest to chat, please email us at contact@loop-me-in.com.au, or go to our website at loop-me-in.com.au. If you’ve got any feedback, please let us know so we can improve and cover issues you want.

And of course, if anything in the podcast today has raised concerns for you, you can contact Beyond Blue on 1300-22-4636 or Lifeline on 13-11-14.