Episode 10- What the Universe Throws at You

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 in 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 to the Loop Me In community and listen to more episodes on our website, loop-me-in.com.au.

Kristine Christ…:             Welcome to another podcast with Loop Me In. Today, we have Patricia McKenzie, mother of three, director of AGL Energy and many chair positions. Patricia, I might let you tell us all the different things you do through our podcast, but welcome to our podcast.

Patricia McKenz…:         Thank you, Kris. Delightful to be here.

Kristine Christ…:             So tell us a little bit about you, firstly.

Patricia McKenz…:         Okay. So, as you said, I’m a mother of three. Kate was my first child. Kate has Down syndrome. She’s 34 now. She has a sister, Sarah, who’s three years younger than her, and a brother, Tom, who is five years younger than her. So, of course, throughout the years, I’ve had some interesting experiences trying to juggle motherhood and a career, and there have been times when I’ve actually needed to walk away from my career in order to look after my children. Tom had leukemia, as well as Kate’s Down syndrome. She had holes in her heart, which required surgery when she was a baby. It’s been an interesting experience to put together a career and motherhood, but I’ve enjoyed both of those. Both have had their individual challenges and I think they informed each other in many ways in how to handle those challenges and how to move forward and how to enjoy the good times.

Dr. Lisa Interl…:              Tell us about how that’s helped you as a senior person. I know you’ve been a CEO in your life and you’ve been a chair of New South Wales Ports and your chair of the Desalination Plant in Sydney. Tell us how your experience has informed you as a senior executive and a director of company boards.

Patricia McKenz…:         How my experience is as a mother of a person with a disability?

Dr. Lisa Interl…:              Yeah.

Patricia McKenz…:         I don’t think I was ever known for my patience, and what I found with Kate was that patience was the key. My other children would say to me, “You never yell at her. You yell at us.” I’d say, “Well, if I yell at Kate, she hears the tone of my voice and nothing else. So I have to be patient. I have to explain things in a way that I know she’ll understand.” And that’s an interesting thing when you take it through into the corporate world. If you only yell at people, if you’re going to demonstrate with people in a way that they can’t accept it, then you lose. So, that was one of the things I took through.

I think the other big lesson was resilience. I found that there were many times with Kate where we thought we were going really well and then something would occur and I’d feel like my world would come crashing down again, but I learned that I had enough resilience to pick myself up, pick her up and find another route. And so, when it came to my corporate career, I’d planned that climb up the corporate ladder, that wasn’t to happen. I had Kate. Later, I had Tom. And so, I found within myself the ability to come back from whatever occurred to find a different route to the end goal. And so, I find myself now with a director career, which I probably never thought I would’ve been able to have once I’d had Kate and yet I’m there now through a different route, but nonetheless, I’ve got to the place I want to be. And so, I think they’ve been the real lessons and the real assistance that it’s given me to learn from Kate to move into that world, that corporate world.

Kristine Christ…:             And I guess that’s what it’s like when you have a disabled child, isn’t that? The first few years of where do we go from here is… It’s a different pathway with raising a child with a disability and we can say today that Kate has Down syndrome and it’s very different. You don’t get a manual to say, “Hey, this is what…” They go to a different school that you probably wanted them to go to. Tell us a little bit about Kate’s early years.

Patricia McKenz…:         Yeah. So when Kate was born, I guess like everybody else, I just assumed I’d have a normal pregnancy, I’d have a baby without any issues and I’d take it all in my stride because there I was, head of the corporate law department of a major listed company and I’d be fine and we’d all be great. It didn’t quite work out that way. And so, firstly, I had to come to terms with the fact that Kate had a very serious disability. She also had holes in her heart. So at five months old, her heart started to fail and she needed major surgery. So that first year was testing while I changed my view of motherhood and what that would mean for me moving forward and while I tried to get my head around what it meant for Kate to have a significant disability in her life.

At the time, I thought, “Well, okay, fine. She’s going to be the best person with Down syndrome you’ve ever seen. She’ll be up there. She’ll be fantastic and I’ll do everything I have to do to make that happen.” As it turns out, Kate didn’t quite have that capacity within her. As she moved through her life and we found that, no, she wasn’t going to learn to read or write, that at one point it didn’t look like she’d walk, but with massive amount of physiotherapy in the early years, we got her there, but she’s not great, I mean, she’s not going to run the marathon tomorrow, we found that we had to rejoice in the things that she could do and we had to change our expectations. She wasn’t going to be one of the highest performing people with Down syndrome you’ve ever seen. She’s probably at the other end of that spectrum, but she’s an extraordinary young woman and I’m so proud of what she’s achieved throughout her life with what she was given, which wasn’t a whole lot.

Dr. Lisa Interl…:              It is you adjusting your own expectations-

Patricia McKenz…:         Yeah, absolutely.

Dr. Lisa Interl…:              … and in some ways your own ego around being a parent and I think that’s the same for fathers or no matter who you are in that parental relationship, and then to accept people for their difference and what they bring. I certainly know that Louis brings us joy beyond. Also, similar to you, Patricia, I was not known for my tolerance of things. I have a very short tolerance, but I have turned out to be actually a very tolerant person and very patient with people and particularly with Louis. And so, that’s a great gift that he’s given me.

Patricia McKenz…:         Yeah. It’s amazing, isn’t it? People have said to me when they’ve seen me working with Kate, “Oh my God, you’ve got so much patience with her.” I think, “Hmm, I bet my other two kids don’t think that.” But yes, you have to work with people in the way that works best for them. So yeah, I’ve developed patients.

Kristine Christ…:             Talking about your other two children, how has it been for them along the journey of having… Because both Lisa and I have other children. I have two myself. What was their journey like growing up with a sister with Down syndrome?

Patricia McKenz…:         I think they both always just accepted Kate. She was there when they arrived. She was there first so she’d staked out her territory. They are wonderful with her and really have been throughout their lives. As they got older and could see that she couldn’t do things, they’d do things for her, help her. They adore her. As she got older, I used to think, well, as you do, “Well, what’s going to happen to Kate when I can’t look after her?” But I always knew that Sarah and Tom would always make sure she had a happy life. Whatever I asked of them in relation to Kate, they’ll do. So when I got COVID earlier this year, as you do, as everybody does, every second person at the moment, both of them called and said immediately, “Okay. I’ll take her. Send home to me. I’ll look after her until you are well.” And so, she went and stayed with her sister.

Kate had been exposed to me so she was taking a risk of Kate getting COVID, but that’s exactly what I expect. I know I don’t have to ask of them. I know they would just always act in her best interests. Really, they grew up with people with disabilities around them. So every year, Kate would have a big birthday party. It was the hottest ticket to her school to get an invite to her birthday parties because she’d planned them for six months. We just finished one, start the next. Her brother and sister were wonderful with all of her friends as well and would get into that party and get everybody up dancing or onto the trampoline or whatever it was we were doing. So, I’ve always felt that they just had a natural acceptance.

Dr. Lisa Interl…:              I think we’re the same, Kris, isn’t it?

Kristine Christ…:             Yeah.

Dr. Lisa Interl…:              Your parties for Matthew is the hottest ticket in town, I think. Yeah, pretty special. Everybody dances, regardless of disability, ability, whether they’re good dancers or bad dancers, doesn’t really matter.

Patricia McKenz…:         No. People used to say to me, “Oh, you’re so brave having a party for 20 kids with a disability.” I’d say, “Compared to 20 seven-year-old boys, oh my God, these kids are so easy.” When you say line up to go to the piñata, they line up, because they were used to being you had to do what you had to do. They followed instructions. Seven-year-old boys would just look at you and go, “Yeah. Right, lady,” and off they go. So I found her parties were an absolute joy to run.

Kristine Christ…:             How difficult was it, Patricia, working, I would imagine, a lot of hours, and then also trying to find things for Kate to do? Because it’s not as easy as sending them to a school and knowing they’re getting that education. There’s so many therapists you have to see to get them to where they are.

Patricia McKenz…:         Yeah. Before she went to school, there was a lot of running around from one therapist to another. I can remember when my second child was born, Kate’s speech therapist was up two flights of stairs and neither of them walked, so I’m running up and downstairs carrying children up and down. What a nightmare. But I think you just need to do what you need to do. You think, “Well, okay. If she’s going to speak, she needs therapy,” so you just got to fit it in.

I think it’s also a question of ask a busy person. Once she got to school, I was always running programs and chair of the PNC and all those things because I wanted it to be as good as it could be for her. She started off in a class in one of the local schools. Unfortunately, when Tom got leukemia and we had two years of treatment, bone marrow transplant and whole lot, the wheels fell off for her. She couldn’t understand at all why mom wasn’t there all the time. And so, she would express it sometimes by biting or hitting me because she was so frustrated. And so, we thought that she’s not going to get enough emotional support so we moved her to a special school.

Once we were past that, I said to her, “Would you like to go back to your old school?” She said, “Oh no, this is my school.” She felt she was a star at that school. She would sing in the concerts. When she got into her last couple of years, she decided she wanted to be a school captain, and so off she went and became… She was vice captain for… She wrote speeches. She’d actually say to me, “Talk about the speech.” Then we work through what she wanted to say. So she was vice captain and then she was captain and it gave her huge self-esteem. So I think to go back to the question, how did I manage it, I managed it and I fitted in all of those other roles around her as well, because I could see the outcomes. Ask a busy person, you know?

Dr. Lisa Interl…:              Yeah, that’s right. It sounds like she takes after her mom though, lobbying and writing speeches to be captain.

Patricia McKenz…:         Isn’t it hilarious? Yeah. Yeah. She really wanted it and the teachers were astounded at how much she wanted that role. She fought for it. When she got it, she would say to me, “Oh, I have to be a role model. I have to be a role model, mom, for the little kids.” So she had her concept of what it meant to be that school captain as well. Yeah, it’s fantastic.

Dr. Lisa Interl…:              What a sweetheart.

Patricia McKenz…:         Oh, she is. She’s an absolute delight.

Kristine Christ…:             Tell us where she is at the moment. I believe she has a boyfriend.

Patricia McKenz…:         Well, I think Kate’s living her best life. She lives independently with her friend, Rob. So Kate and Rob have known each other since they were toddlers, so they kind of feel like they’re more brother and sister. They love each other to death. And so, when they got to 25, we were thinking, “Well, what are we going to do about the future for Kate?” A new program opened up in the New South Wales government, which was called Supported Living Accommodation, SLA. We thought we’d give it a try and see if perhaps she could live independently, maybe just a couple of nights a week. We applied for it and we got the funding for Katie and Rob, so with Rob’s family as well, for Kate and Rob to trial this.

So they started out two nights a week. We had an apartment in Chatswood. We adopted a co-tenancy model, and that’s a model where a person who’s not disabled lives with them. She is a companion. She’s not a carer. She has the obligation that we have of her, is that she needs to be there overnight when they’re there. So if anything goes wrong in the middle of the night, they don’t have the intellectual capacity to deal with a problem. What they can do is they deal very well with routine, but they don’t deal well with problems. So we have someone who lives with them, who’s there overnight. So we set this up. We brought in The Housing Connection to support them. This was all prior to the person-centered nature of NDIS.

So finding service providers who actually would allow you to tell them what you needed rather than being told, “Here’s what we offer,” was a real challenge at the time, but we found The Housing Connection, who’d been sensational, and they supported them into this arrangement. And so, they started off a couple of nights a week. As time went on, they asked to have extra time in the flat and now Kate’s there six nights a week. She comes home on Sunday nights to hang out with the family, but she’s just having a wonderful time. Robbie loves it. In fact, it is gone to the point Rob was having an argument with his family and he said, “Oh, I’d go back to the flat.” He was like, “I’ve had enough of you. No, I’m going back to my place.” So, that has worked out to be fantastic.

They both work in a disability enterprise by choice. They choose to work there. They enjoy it. They’ve been there for 16 years. They have social clubs, which they go to Friday nights and Saturdays for outings. They love musical theater and they love music. They go to lots of musical theater and lots of concerts. They’re very well known in the area. For example, they go to brunch every Sunday morning, which is a big treat for them. When they started that, we thought, “Oh, nobody will understand them,” because their language isn’t great. So we made up little cards with various options, avocado on toast, bacon and eggs. Within weeks, the staff got to know them. And so, I turned up one morning unexpectedly and the staff said, “Oh, hi Kate. Hi, Rob. What would you like today?” Kate says, “Oh, bacon and eggs, caramel milkshake.” They go, “Fine.” So there was no need whatsoever.

Kristine Christ…:             No need.

Patricia McKenz…:         In fact, it was Rob’s birthday on a Sunday when they go to brunch and the staff brought out… None of us were there. It’s just Kate, Robin and their support person. They brought out a cake and sang Happy Birthday to him. I thought, “Oh my God, that’s really being part of the community, isn’t it?” So they have a wonderful time doing that. They plan holidays and off they go on holidays with a support person. The first one, we planned it to within an inch of its life. Now, Kate tells me the other day, “Oh, we’re planning a trip to the Gold Coast.” She and Rob and the support people are planning this next trip. Quite honestly, if I book the airfares, that’ll be about all I’ll do.

So, it’s an amazing place they’re at in their life, where they have lots of friends. They invite their friends around for parties. It’s party central over at Chatswood. They’re always having parties. They invite a couple of friends around for that. They’re just having a fantastic time and they’re just so happy. I’m so thrilled that we got them there. They now have still funding through NDIS, which is really sufficient to support them in that lifestyle and couldn’t be happier. The thing is it’s sustainable because it works without me.

Dr. Lisa Interl…:              That’s it. Yeah. It’s such a lovely story, isn’t it, that not only are they living and being independent, they’re actually having a ball being independent.

Patricia McKenz…:         Yeah, absolutely. Yeah. Yeah. I took them home after some outing we’d been to one night and I said, “Okay. Guys, well, go through your usual routine before you go to bed,” and boom, off, they went. They knew exactly what they were doing. They got their lunch ready for the next day. They both had a yoga. They got themselves all sorted and Kate said, “Okay. We’ll see you, mom. You can go.” I thought, “Wow. How good is that?” Now, it’s not entirely true to say it all works without us. Dara and I do a lot of work to make sure that this runs smoothly, but it is sustainable and we are starting to devolve more and more of the support to The Housing Connection.

So, now, Kate’s medical appointments, her standard medical appointments, she goes with a support person rather than me take her, all those sorts of things. Her hair, so I used to always bring her back and get a haircut with me. Now, she goes with the support people. Consequently, she has pink hair and it goes into an Afro every now and again, but she likes it and she’s happy. I figure it’s her hair, it’s her life, so let her make that choice. So all those sorts of things, we’ve started to devolve to make it more and more sustainable that as time goes on, there’s less input needed from the family.

Kristine Christ…:             I think also the important thing for that is for her siblings to see that their role will be like yours, but in terms of your… They’ll always have to be there, but at the same time, they don’t have to take her in and look after her full time either and make those big decisions.

Patricia McKenz…:         No, she absolutely has her life and she chooses how that works. They interview staff who are going to work with them and decide whether they like those people. They’ve got their series of questions they ask like, “Do you like music?” They like to dance so they want to have dance parties. So they’ve got their series of questions. So, they’re making the choices to the extent that they’re capable of doing that. Now, that’s what’s really important. Whereas if they had to move in with one of their siblings, then those choices become much more limited. So they’re getting to choose their lifestyle and her siblings get to live their lives as well. So everybody’s able to make their own choices in life, which is it’s kind of nirvana.

I should tell you this great story. Her birthday was in May and I was interstate, business, so I’d said to the support people, “Look, why don’t go out for dinner. I’ll pay for it, take her out for dinner.” And so, they sent me photos. There she was standing in front of what would’ve been 25 birthday cards and waving. There were photos of her at dinner and she’d invited some friends. Their flatmate, Sandy, went with them because she joins in all those things. She invites them to her birthday parties. It’s just a beautiful family relationship and she was having the best time. Someone had ordered a birthday cake, which said, “Happy Birthday Kate.” I thought, “Wow. You’ve actually formed your own family.” There’s a real sense of true caring between these group of people.

Even though the carers changed from time to time and the co-tenant, the flatmate changes from time to time, that sense of family continues and it’s kind of nirvana, isn’t it? It’s what we all want for our kids because you think, “Well, who’s going to love my child the way I love her?” But it’s not the same, but it’s so lovely and supportive that I got these photos, honestly, I was teary. It was just so beautiful to see. I thought, “Wow.” Right now, this is just working so well. You have to accept that it may not be always that the case and the things will change and we’ll just have to work with that, but right now it’s the best thing we could have done for her.

Dr. Lisa Interl…:              Yeah. Well, that’s something that we are looking for, isn’t it, Kris?

Kristine Christ…:             Mm-hmm.

Dr. Lisa Interl…:              We’re in the same situation going, “Okay. Well, this is not… We need to find a solution going forward for our sons and how’s that going to work?” So having these stories is really important, Patricia. I really appreciate it.

Patricia McKenz…:         Yeah. Look, it’s not the only model in the world. Different people have different things that work for them. Some people I’ve spoken to like living on their own. They don’t want to have anybody else with them. Kate or Rob would never going to be able to manage that. They really do need to have quite a lot of support around them. So, this was a model that worked for us. When we looked at it initially, there was no chance of a group home that certainly was off the cards for anybody who was 25 and fairly reasonable so that wasn’t going to happen so we had to come up with something different that would work. This is the model that has absolutely worked for them. We thought we were going to have lots of trouble finding people who would want to live with them and that hasn’t been the case. Most people stayed for maybe a year, some, two years. Our current person has been with us coming up to six years.

Kristine Christ…:             Wow.

Patricia McKenz…:         She’s just quite amazing. She’s stunning. She’s a wonderful woman. And so, we’ve lucked out big time with this person, but the guys got used to having a different tenant coming and going. They quite enjoyed it after a while. We’d say, “Well, so and so is leaving.” They’d go. “Okay. Who’s next?” It became, “Yeah. Well, that’s fine. We’ve really enjoyed meeting all these people so it’ll be all right. We can live with someone new.”

Look, I think the message really is there’ll be a model that’ll work for everybody. It won’t be the same and there’ll be different things that fit around it. I mean, Kate and Rob don’t like sport lunch, but there are all sorts of opportunities in sport if that’s what you want to do. They went along to Special Olympics bowling for a few years, but COVID came along. And then, of course, they got out of the habits so we couldn’t convince them to go back, but if it’s sport… Depends on what your interest is. There are all sorts of ways of getting our guys involved in things and finding an accommodation model that supports that choice for them.

Dr. Lisa Interl…:              Thank you so much. We really appreciate you taking out this time out of your really busy schedule and telling us about your story.

Patricia McKenz…:         Oh, it was a great pleasure. I do hope that it helps others to feel confident that there is a pathway towards independent living to the extent that it’s possible and that can end up in your child living their best life in the same sort of way as Katie’s now.

Kristine Christ…:             Thank you, Patricia.

Dr. Lisa Interl…:              Thanks, Patricia.

Kristine Christ…:             You’ve been so awesome. Thank you.

Patricia McKenz…:         Great pleasure.

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