Episode 5 – Skills for Life
Hosts Dr Lisa Interligi and Kristine Christopoulos welcome guest Nicola Millar, Occupational Therapist, to talk about helping young people with disabilities develop skills for life.
Author of ‘Dancing with the Maternal Bond’ and mother of 33 year old Julian, Thea Calzoni shares her story of learning to accept her son’s disability to advocating for him to enjoy a full life.
Recorded: 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.
Kristine C: Welcome, Thea Calzoni. We’re very lucky to have you on. You’ve just written a book called Dancing With the Maternal Bond, which both Lisa and I have ordered, but read snippets of it. I’m very excited about reading it.
Thea Calzoni: Oh, that’s lovely to hear. It’s a real joy having got everything down on paper and just got that little bit of distance between me and what seems like a really long struggle. Sounds horrible, but my struggle.
Dr Lisa Interli…: This have been really cathartic, actually, all brought up some stuff, because I know that Kris and I have probably typed around 10 podcasts now and we, through that process have connected on different issues with our speakers and with each other and really brought back memories and feelings, sometimes just feelings, through those conversations. So I imagine writing a book was really cathartic and emotional.
Thea Calzoni: Yeah. At the time it was another difficult journey really. I think, like you’re saying, probably when you did your first podcast, it was a little bit nerve-wracking and maybe it got a little bit easier as you went along, you seem like professionals now, and you’ve only done eight or nine. So it’s been an experience that you’ve really grown through and I think that’s a good thing, but any effort brings up self doubt, doesn’t it? And you think why are you doing this? And people are going to ask you, why are you doing it? And there’s all those sorts of questions in your mind too. Yeah, I think that, for me, there were a few aspects to writing.
One of them was that it was a healing thing for me to do, a way of during the early days, it was a way of writing down things that I couldn’t share with other people. Isn’t it funny how we feel that we can’t share things that we really have so much in common with other people, but we don’t want to admit to them for some reason. Because especially in the early days, it seemed like you should be able to get this, but you’re not quite getting it as if you failed a motherhood test.
Dr Lisa Interli…: Yeah. I think that’s probably true of the way that at least I felt, it was, you felt guilt for something that I’m not a hundred percent sure why you felt guilt of having a child with a disability. But I carried that for a long time.
Thea Calzoni: Another thing that people say they feel is judgment. They feel the judgment of others, something that I experienced directly, but I think I was protecting myself from it. I was wanting to try and present everything in the worst, in the best possible light, so that to avoid any risk of being judged. Yeah. And I think I had my antenna out for it all the time, it’s a bit defensive.
Dr Lisa Interli…: But people were judgemental, I think particularly, it wasn’t evident that Louis had a disability physically, you wouldn’t know that only his behavior when he was little he couldn’t stand very busy or loud or bright environments and he’d scream. And I often got judged at supermarket or something or thought he was out of control and I was a bad mother, but actually he was really suffering in those environments.
Thea Calzoni: Yeah. And I think you saw so you don’t have time to be nice to people and to stop and explain because you have to be so focused on-
Kristine C: So focused, yeah.
Thea Calzoni: Regulating yourself and regulating your child. And you’re just in this little zone, aren’t you? With them, it’s as if the rest of the world falls away. Yeah.
Kristine C: So true.
Thea Calzoni: And so, wow. I think people are a little bit more understanding these days, perhaps in some situations, but you will always get people who will feel that you shouldn’t be out with your child if that’s the issue. That have this idea that somehow there are situations that you’re deliberately putting your child and yourself in this situation, when in many cases there’s no option. And even if there isn’t any option, your child needs to learn and to be acclimatized to different things. And so it has to come a little bit through that confrontation. And why do they have the lollies and all those things there and all the bright lights and all that stuff? What is it about this world that’s there to actually get to people’s nerves anyway? Notice that too, you have as a really sensitive child or you’re a very sensitive person yourself.
Kristine C: So true.
Thea Calzoni: Now I’m getting judgemental. Yeah. But I wanted to talk about why I wanted to write the book. And I think part of it was that I had spent so long trying to make Julian look and be good in the world. I really just invested all my creativity in that. And then once he got to being in adulthood and he was starting to get some positive feedback from people and I thought right, now, it’s my turn to shine. I thought I’ve got something to say. I’d always wanted to write about what an interesting life I’ve had apart from Julian, but just some of the really lovely and fascinating and bizarre people that I’ve met, who have been, actually able to help us in our journey in ways. And people sometimes who have you pick up along the way and they travel with you for some other way, and then they drop off but that you might not see them anymore, they might not be close to you anymore, physically close or even socially close, but they still have that part of your heart.
And they brought you, and that maybe you were able to give something to them too, by them being able to give something to you, that sharing. And I think that the guiding drive and I think the guiding, something that drives the book and something that drove me is this idea, not the idea, but the feeling of love. And it’s a feeling of needing love, of having love, needing love, experiencing love, and also wanting love. There’s so much of it so in a way that sets you up for having a page turner in a way, because there are always things that are going to stand in the way of the wanting. And sometimes you might block someone wanting to do the giving and yeah. So I hadn’t thought of it until I finished it, that that was such a big force in it, because you don’t really know what your emotional drivers are.
Dr Lisa Interli…: Love is kind of, I agree with you there, it’s protection to guarantee inclusion. So well, at least what I don’t want is for Louis to be excluded from society. And so in finding love in some way, through other people or his friendships with Matthew or with other people, it guarantees his inclusion.
Thea Calzoni: Yeah, it’s true. So if one person can see a spark of something that they like in a child, that means that that child is real to them, is not just a bundle of problems or someone that has to be kept clean or kept tidy or kept orderly, they’re an individual. I heard Clementine Ford who has been a bit of a political advocate and has written a lot of political things about feminism, talking about love actually. And she’s written a book, essays called Traces of Love, just recently published. And she said that everybody, that what love is about wanting to be accepted and recognized and known, known, accepted and recognized, I think were the three words.
I heard her being interviewed by Hillary Harper on Life Matters, which is a radio national program that I’ve listened to for many years on and off. Yeah. And I thought, oh, that’s so true, that’s really almost about what we want as advocates. Isn’t it? To have recognition and appreciation and to be known. And for so long, I think people or children with disability were not necessarily known as individuals. Yeah. Except by-
Dr Lisa Interli…: [inaudible 00:09:43].
Thea Calzoni: Yeah. Except maybe by some of the carers and the people who worked with them really closely, who had time to see that. But if they were just one in a big group of people, they might have been the one that got the attention for the wrong reasons and was a thorn in the side of the teacher. And otherwise, right up until the 70s, people were segregated and taken off and called tripled.
Kristine C: Yeah, I agree. And I lived next door to a down syndrome boy who, the blue bus came around every morning to pick him up. And it was so obvious that he was heading to a school with children with a disability. Whereas, now I feel like the bus comes past to pick Matthew up, but it’s just a regular bus, it’s not so obvious. And he feels like just one of anyone else. And that’s the biggest thing I think they do understand when they’re being treated differently.
Thea Calzoni: Yeah. And to some people, it really matters and to other people, it doesn’t matter. So, it’s, once again, that’s a different thing, but I think everybody has the right to be respected and to be regarded as an individual, but we all do need to be in groups for our survival and to enhance our lives. And yeah, there’s lots of different groups. I don’t believe there should be any shame in a person attending a specialist setting, I think that, but maybe it would be nicer if sometimes those settings were opened up so that people could… And sometimes they are, aren’t they? When there are fights or fairs or opportunities for people to be showcased, that does happen. Yeah. And especially now when things are online, but it’s probably more that could be done, we probably could do a little bit more positive marketing, couldn’t we? For people in specialist settings.
Dr Lisa Interli…: And tell us about Julian.
Thea Calzoni: Well, Julian problems were only apparent to me, in so far as he was a struggling baby, and I was a hopeless mother. But I think that his personality was evident right from the start. I remember the midwife saying as a poor little scraggy myope, struggle to take his first breath. She said, “Oh, he’s very determined.” Which was lovely, wasn’t it? And I think midwives are there to see the magic in people. And so, even though he had a lot of problems, he couldn’t feed properly, he was basically starving. He had some, I don’t know what problem he had, he had physiological problems that couldn’t really be defined. So he had pronounced little protuberances on his pelvis that people thought might have been some prolapse testes or something like that, which they weren’t, it was all, people didn’t really know what was going on. And he was a little bit floppy and little bit high tone.
If you know what those things mean, I think to people who have children with cerebral palsy, they know what they mean. And also, multiple undiagnosed disabilities and genetic disorders also come with these types of characteristics. But I didn’t know what those things were, I thought, wow, I’m really terrible at holding this child. And my husband who’s a very organized person, probably thought the same. And he could wrap him up, hold him and he’d be good for a bit until he spread his little arms wide and kicked his legs out and went, ah, yelled and yelled and yelled and cried for most of his first year, I think. Yeah. It was really most extraordinarily alarming experience.
Kristine C: You talk in the book about the day your doctor read to yourself and your husband Julian’s results. And it brought so many memories back to me as well, because I think I said the same thing as you is, when they told you he had an intellectual disability in his age level, he wasn’t at the age level of a typical four year old. And I think you and your husband both looked at each other and said, “Oh, but he’ll catch up, won’t he?”
Thea Calzoni: Yeah. That’s how you felt too?
Kristine C: A hundred percent was the question, I’ll always remember asking the same question thinking, well, okay, so he is not standing up at two, but if he does it at three, what’s the difference? And I had the same feelings like you did.
Thea Calzoni: I think too, and I don’t know if this was the same for you, but for us, they didn’t use the intellectual disability word for a long time. It was just developmental delay.
Kristine C: [inaudible 00:14:48].
Thea Calzoni: So just that term saying, your child has a developmental delay. Well, implied in that is a delay. So you catch up, you don’t know that, and then slowly it comes to you and his gap of his delay behind others is getting wider. And then as that does become wider and more evident, then people will say, “Oh, it looks like he’s got a disability.” So that means it’s something that’s more fixed and that can’t be changed. Part of the reason that they say delay and they can’t answer questions like, will he catch up? Is because nobody knows. And I think it’s important not to take away hope from people whose children may well catch up or even surpass other people, because some children who have disabilities in some or delays in some area are really advanced in other areas.
And if I think about it, if I think about how Julian is today, I know that he has a really enhanced and highly developed capacity to read what people are doing, what they’re saying, when he doesn’t actually understand their language, but he’s a really good observer of body language. And so he’s very attuned to things and he can be supportive too in his own way and wants to bring people together when there’s conflict. I’ll give you a little example if I can, from very recent times, not in the book, but it’s foreshadowed in the book. And it’s one of the things that I write about quite a lot in the book about the differences of opinion that Ron and I have, my husband Ron, in bringing up Julian. And because we see the world differently and we see the world, perhaps in traditional male, female ways of looking at it, but also just as different individuals. So we used to disagree and I couldn’t write about every disagreement we had because there are just too many.
But we did disagree at times when Julian was young about how Julian wanted to take on the school bus, the special school bus, Julian wanted to take toys. He might want to take a big plastic bus because in that bus, he put lots of little people and one of them was a policeman and one of them was a bus driver. And they were characters that he would then show other people, but he couldn’t say why he wanted to, he couldn’t he just say, my ba me, yeah. Oh, ba, here, so just in these words and sounds, he would say it. So I would get some kind of agreement from the school that even though it wasn’t a special day, because on special show and tell days you can bring something in, and he saw that and he thought I’m going to run with that, I’m going to take things every day.
I used to say, “Look, please because he can’t talk as well as the other kids,” even though he was at a special school, his speech has always been very impeded, I’ve had agreement from them, but Ron would say, “This is bizarre, he can’t take this on the bus, it’s awkward, it’s difficult for other people.” That’s all right, it’s going to be okay. So we did that. So anyway, recently we’ve been preparing decluttering our house because we’re selling our house and moving into an apartment. And one of the things that we did use is a trailer, a covered trailer that we put a lot of things that we didn’t need and that nobody wanted. And we took them to the waste transport station, like old paint, kit tins and stuff like that nearby.
And Julian really loves this occasion of doing something with his dad, which is basically watching his dad try and remember how to lock the trailer into the car and saying, “Here, here that goes there. No, no, no it’s in there,” because it’s not been many times. And it also has happy memories because Julian remembers when we used to go camping, we’d take that trailer and that trailer would have all our food in it. And that would be a lot while we were camping and so we would open it up, it’s good, happy memories. So he said to me, and we were gradually filling out the trailer before we took it over a number of weeks before we took it to the waste transport station. And Julian had this idea that he would like Ron to take the trailer to his day program so everyone could see this.
And then Ron said, “Well, I’m not going to do that. It looks so heavy, it’s so full of things and that’ll be terrible and why would anyone want to see it anyway?” And so I had to say, “Well, we won’t take it when it’s full. We’ll wait until it’s emptied and then we’ll leave it hooked onto the car, we’ll park it out in the street so that it’s not… I know it’ll be hard to get in the driver, we’ll park it out in the street so it’ll be there, and so on.” Anyway, so talk her all through, use my best executive functioning skills and explained how it would all be done and got agreement. So we did that. And then come the day when it was time, the trailer was outside empty, parked in the street, behind the car, it was all going to happen and then dad said, “No, I’m not going to do that. It’s silly.
He said to Julian, I can’t do that because the streets are too small, but we go along to go there and it’s school time, there’ll be people dropping off their kids, it’s really awkward, it can’t happen. Sorry.” And Julian went, “No.” And ran into his room and slammed the door. And then I stood there and I said, “It can be done, it has to be done. You can’t do this to him, it’s important for his communication.” He said, “Nobody asked me.” I said, “Well, yeah, we did talk about it. And yeah, we all did talk about it.” He said, “Well, I don’t remember. Well, if you think it’s a great idea, why don’t you do it?” I said, “Well, okay, I will. Okay.” And I’m hopeless at driving trailers, but I said, okay.
So then I had to go in and persuade Julian and he was all, no, no, no, no, no. He was just going to stay there and not do anything and slam doors and be stuck in this meltdown. I had subdued meltdown and so anyway, got him out there, had to pretend to be jolly, got in the car, went by roads that were not cluttered, went a different route. It was easy. Came back, all done, very happy people saw it, smiling, job done, explained to the coordinator of the center, why it was important to note to this and to see. Told the stories that Julian wanted to tell so that she could then tell other people, a bit of it had been written in the book and there was a picture in the communication book and then came home, hands on the key said, it was fine, you could have done it, but I was happy to do it. So we had a quiet, reflective day and things are back on even keel.
Dr Lisa Interli…: The role of the mother.
Thea Calzoni: Yeah. The role of the mother and I don’t know, I feel comfortable speaking about these things because they’re real, no one has to have any shame. They’re just emotions, it’s just strong. It’s not as if, maybe it seems like I’m the one that’s got all the power, but it’s not for myself, it’s power for, it’s not power to. I have the power to advocate for Julian to enable his life, to make it richer. And it’s not about trying to block other people, it’s about trying to open things up. And a great source of relief to me because I had been very open about some family issues, was when Ron read the book and he really liked it. So on balance, I treat him fairly and he comes out looking pretty good.
Dr Lisa Interli…: Well done.
Kristine C: I love where you wrote, when you did find out that Julian had a disability, you refused to mourn and you said Julian might be broken, but I couldn’t believe he was beyond repair. That really stuck to me because it’s the way I felt with Matthew. It’s what you said before with disability, you don’t really know to what extent the disability’s going to be when they’re that young. And yeah, that was quite powerful for me to read that because it’s how I felt. I’m sure you were like me, they said he might not walk. They said he probably won’t talk and yeah, he does those things really difficultly, but he is doing them, not like the way you and I do them. Is that what you meant when you wrote that?
Thea Calzoni: I think at the time I felt, and it was even more, probably not as generous as your way of looking at it is because I think at that stage I believed, okay, I am going to fix myself up and I’m going to fix him. I was still in that mindset of catching up. And I think that Ron was further down the road than me, because at one stage he said, “Maybe he won’t even be able to read a bus ticket,” which was like a shocking way of getting… Because I still thought that Julian was probably going to go to university, he just needed to be unlocked. He needed the speech therapist, he needed the psychologist, he needed the people to work their magic and I had to work magic as well.
And that he was going to be just like everyone else, I thought not even knowing really half the problems that everyone else has because they don’t show them, do they? They don’t always tell you, people hide them, when they can. But I did spend many years, I think really hoping and believing that improving myself and trying to improve Julian and getting the right therapist and everything would unlock the magic key. That would unlock this locked box and then out it would open something as close to perfection as possible. But since then, I think I realized that it’s not about the therapies and all those things are important and the things that I can do to enhance his life and to open up communication and give him opportunities for learning and opportunities to shine. All those things are still really important, but they’re about really about helping him to be who he is. Not about helping him to be who I wanted him to be.
Kristine C: So true.
Thea Calzoni: Yeah. And I don’t think, that’s something that you don’t know, it’s something that people say, “Oh yeah, I can relate to that,” when children are a bit earlier, but it’s not something you can say to people when their children are little. Because of course, every parent wants their child to do well, every parent wants their child to, it’s not just about repair or catch up, it’s get ahead, it’s the human race. And so in a funny way, even though I feel like I hid a little bit from my friends who didn’t have children with disability and didn’t talk so much about what the issues were for me, in time, I came to see that they had many of the same fears and anxieties that I had, that their children weren’t quite the child that they wanted them to be either, or that they had dreamed that they would be.
Those emotions, the disappointment and the worry about… And you’re thinking, well, what’s going to happen? What are they going to be like? What, if they’re not going to be like I thought, what if they’re not going to be a doctor or a scientist or a teacher or a lawyer, or a businessman? What if they’re not going to be like that? And people, we have to keep on dealing with that. I remember worrying about my daughter when she didn’t have a boyfriend and I thought maybe she’ll have a boyfriend.
Dr Lisa Interli…: How long did it take you to get to that point though? Where you just said, well, your job is actually to enrich rather than change.
Thea Calzoni: I don’t know. I can’t even say, I think it’s been a slowly dawning thing. I think perhaps you ladies are ahead of me, really. I think maybe when, I guess when Julian was in his late teens, that was when I realized that he should have the same opportunities that other people had because he was getting interested in girls and girls were showing an interest in him. And then I was thinking about, well, this is really challenging because he has an intellectual disability. And I mean, he’s nice looking, but really, and this is a whole other thing, the whole mating game is all about people enhancing their children’s genes. Isn’t it? So I mean what people are looking for in a mate is intelligence and symmetry of features and sports skills.
So there were quite a few disappointments along the line there. Then I realized that, hey, he’s not like that, but people do like him and people do respond to him. And he did want to have a girlfriend and he did. And so a large part of the, well, not a large part, but a significant part of the book is about how I went to a workshop on sexual rights and really entered in this quite a confronting world of seeing what, not just people with intellectual disability, like Julian, but people with physical disability who can’t really enjoy sex in the same way that able bodied people can, can be assisted through sexual facilitation, by sex workers or equipment to be able to enjoy sexual feelings. And so that was a really different way of looking at things.
I mean, thinking about sex as not necessarily part of a relationship, but just as a person’s right to be able to experience the pleasurable feelings of sex. And that’s not something that everybody agrees on, people have different ideas about that. And some families and some cultures, it’s not something that they really entertain. That’s a whole tin of worms that you have to open up. But I mean, I felt that it’s part of normal human experience and that Julian should be able to have that normal human experience to the best of his ability. And according to what his wants and needs and desires were in a way that wouldn’t really impinge on anyone else’s rights. Yeah, or offend anyone.
Dr Lisa Interli…: Yeah. We’ve been toying with that conversation for a little while yet, and we haven’t sorted it out, but you know what, we should invite you to a dinner with some other mothers and we can discuss it in detail.
Thea Calzoni: I’d be happy to do that. Yeah.
Dr Lisa Interli…: Well, I think that that’s a great opening conversation and we should put an opportunity, if you don’t mind, once we have your book delivered and we can read it, to come back to you and maybe next year, pursue another conversation and explore some of the topics that are fun of mind for us at the moment. Independent living, as you said, the issue of sex and relationships and our own mortality and what happens when we’re not here and all those things, it’s just like-
Thea Calzoni: Exactly. Every parent of a vulnerable person needs to think about. Yeah.
Dr Lisa Interli…: Yeah. So there’s a hundred issues that we are still tossing around and we’d love to have your insights. And as you’re 10 years ahead of us and your thinking is obviously really mature and you’ve been even able to put it into a book. So we really have appreciated your conversation today, but we look forward to more.
Thea Calzoni: Well, so great to be part of this podcast and really congratulations on what you’re doing. I love it. I think it’s a really great resource. And this is one of the things that so many of us remember from our early days, if only there was something like this, then. Well, here it is now for people out there now, and I hope they’re really accessing it and enjoying it.
Kristine C: So true. And can you tell us, has Julian found a partner yet?
Thea Calzoni: He hasn’t found a partner, but he has found there is a… Well, yes and no. And yes and no to, has he found a partner? But he does have, I mean, he may have found a partner, but currently there is a girl at his day program who really likes him and that’s really lovely. And so she texts me and sends me messages about, she saw Julian and how they took some photographs and how lovely that is. And isn’t that nice?
Kristine C: That’s lovely. That’s beautiful.
Dr Lisa Interli…: Okay. Well, thanks so much Thea, and have a lovely weekend and hopefully we’ll speak to you soon.
Thea Calzoni: Thank you so much.
Kristine C: Thank you.
Thea Calzoni: Bye.
Recorded: 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 email@example.com, 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.
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