Mother's Day special episode
Happy Mother's Day. My mum Lorraine has agreed to be on the podcast! Listen to her experiences and insights of what it is like to be a mum who has a child with a disability.
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The website: www.icantstandpodcast.com
You can follow Peta's personal account on Instagram @petahooke
Peta [00:00:03] Hello and welcome to The I Can't Stand Podcast. Yes, it's not Tuesday. This is a very special edition of The I Can't Stand Podcast. To celebrate Mother's Day, I sat down with my mum. I hope you enjoy the chat. I have to apologise for the quality of the audio. However, the chat, I think, is really insightful and gives you an insight into what it's like to be a mum and have a child that has a disability. OK, without any further ado, let's get into it.
Peta [00:00:47] Hello Mum!
Lorraine [00:00:48] Hi Poss!
Peta [00:00:49] People keep asking me questions about my upbringing and how well I've coped with my disability and to be honest, a lot has to do with my parents. So I thought, what about we do a special for Mother's Day? So Happy Mother's Day to all the mothers out there today. Mum, why don't you talk a little bit about yourself just so listeners know who you are.
Lorraine [00:01:14] Hi, I'm Peta's mum. I had Peta very late in life, got a lot of people would say at the age of 39, I did try for probably 11 years to have her. She was an IVF child, desperately wanted and desperately loved all her life. When Peta was born and diagnosed with Cerebral Palsy, my life was probably turned completely upside down and I had to focus on totally different things and focussed totally on Peta to try and get her up and running as much as what she had the potential to do
Peta [00:01:46] You're talking about me, not yourself.
Lorraine [00:01:47] That's OK. Peta is my life.
Peta [00:01:50] So, yes, that's completely true. I, like, describe yourself.
Lorraine [00:01:55] Happy. Don't see the negatives in anything. I'm a very glass half full person and not a glass half empty person.
Peta [00:02:03] You can see where I get it from, can't you?
Lorraine [00:02:05] There's a saying build a bridge and get over it. And I really do work to that.
Peta [00:02:10] Mum, as you can see, is very driven and sort of just got on with things very much, which I think is a similar characteristic for a lot of women in the 90s that had kids with disabilities. I know Kerry, the lady I met through Heidi Anderson is very, very similar. It's always funny being the only child people really sort of think negatively about being an only child, but I personally love it. I think I've been so privileged to have the parents that I've been given. Particularly with you both being older, you are able to put in the time and spend the time with me. You didn't work during my childhood, and I know that's a very privileged experience that a lot of people can't do, but I think it's been invaluable for me. It's a testament to you as a mother that I am just as happy and, you know, well adjusted, I think. So, is there anything you wish you would have done differently?
Lorraine [00:03:13] We've certainly had our challenges in life, as anyone would know, with a disabled child, you've always got a challenge and every day is totally different. No, I don't think I would have done anything differently. We did make a decision, Clive and I, earlier on, whether we would try the academic side or the physical side for you to either have full-time physio or concentrate on the academic side. You know, we've loved every stage of your life, which I think all parents do enjoy the stages of their children's life.
Peta [00:03:44] And so do you think all parent differently to you?
Lorraine [00:03:49] I think you'll probably be a harder mother maybe? Or stricter mother, but you've got you're a lot more balanced perhaps than I was. As I say, I've always said there's no book on it and there certainly with no book on bringing up a disabled child.
Peta [00:04:02] It's quite funny for me to think that you would think I would be more strict because I think both of you and Dad have been very strict.
Lorraine [00:04:10] I yeah, I guess strict in a different way, um, it's a different time to bring up children now. It's what it was when 30 years ago. When you were a baby I just felt like that to give you that love and guidance and be there for you was the most important thing. I always say children really don't know if their parents are rich or poor. They just know how much quality time you've spent with them,
Peta [00:04:33] because these days, if you have a child with a disability, you would automatically go on to Google to try and understand what was ahead of you. But in the 90s, that wasn't such a thing. So how did you get the guidance or the understanding of what was ahead for you and Dad and me?
Lorraine [00:04:52] I actually when I retired, I did some charity work and I went and did a programme with Glenn Allen Special School to help children with disabilities swim because I love the pool.
Peta [00:05:04] And that was completely before me. It just was serendipitous that you had me.
Lorraine [00:05:09] Correct. I got the complete understanding of what cerebral palsy was at that stage, of what a huge scope it was from one degree to the other. When you were born, you were born at 28 weeks. So you were so premature and so tiny that they told us, you'd be three before you actually caught up to be doing normal things. So I never thought of you having a disability. Until at ten months you were diagnosed and I must admit it completely took the wind out of my sails. Clive was absolutely brilliant where he hadn't completely understood it. But it did take me a little while to come to grips with the fact that I actually had a child who could be disabled but had faith in you because at that time you were talking, you were funny, you were chit chatting to yourself all the time and singing and as a happy little 10-month-old child. So I never really lost that faith. Then I think when you're about 18 months old, we were away and a lady came up to me and I think she had a child who was special, but I'm not too sure of what degree. She came up to me and she said, never give up on your child. And I hadn't at that time and I thought, no, I never would. I always had the confidence in you that you would be happy and adjusted and hope that you'd be able to cope with whatever was dished up to in life. And I think you have.
Peta [00:06:40] So, I mean, that's really interesting in the fact that you really struggled to begin with because you had that more knowledge than Dad did, so Dad was probably taking me as just Peta, whereas you had some prior knowledge with your experience of working with kids, with a disability, with doing swimming. So do you think that's why it seems to be a much more prevalent experience that parents do really struggle to accept that they have a disability? Do you think that's because people can jump on Google and, you know, look at every possible scenario for their children rather than just looking at their child and thinking God like they have every possibility because they have our genes?
Lorraine [00:07:28] I agree. I think that sometimes knowledge I'd never like to look ahead of, always like to look at that particular time and be confident about that. You were just, I felt you were just an incredible child right from the start.
Peta [00:07:42] Oh, God. God. Do you think I have a big ego or do you think big ego?
Lorraine [00:07:48] You just have the ability to be happy all the time, Peta. You know, we had some times I can remember in primary school, you had a disco and you were so excited to be going to your first disco. And I'd made you and your little friend a matching outfit in black and white. They were so excited. And when I picked you up from school to go that night, you were crying your eyes out and I got in the car and you're just sobbing and I'll never forget that. I'm thinking, how do I deal with this? You know, by the time I got you to stop sobbing, what was the problem? And you said, I won't be able to dance. And I took you inside. We settled you down, I got you dressed, and I said, you'll be fine. You go to the disco. I picked you up, you came out with a big smile on your face and you'd won a prize, obviously, he was a lovely DJ, but that then gave you the confidence also to be able to deal with whatever was happening in your life.
Peta [00:08:41] So whereas from my perspective, I just remember you say you'll be fine! You know, you just got to suck it up and get on with it.
Lorraine [00:08:50] I think we're all dished out with things in our life sometimes that we don't really want to have but we have to deal with them in our own personal life and yeah, I'm a big believer of, well, okay, it's happened. Let's get on with it. And, you know, for you, I've just always said. OK, Poss, that's what's happened, but let's move on.
Peta [00:09:11] Yeah, it's really interesting now there seems to be a real prevalence and a movement, particularly on Instagram, of lots of women talking about accepting themselves and being positive and understanding themselves to a fuller extent. I really struggle because I'm sort of sitting here thinking, golly, like a lot of these women, are 50, 60, and they don't know who they are. Whereas with my upbringing, I've known from, God, six who I was? So I think that's very much like having my upbringing is I've had, I've analysed everything to the enth degree. So I know, I'm very self-reflecting and I think that's to do with, you not elaborating more.
Lorraine [00:10:00] I'm not going into too much detail. Certainly having Google maybe would have frightened the living daylights out of me now, but we didn't have that. We only had to go by the guidance of the people that you were dealing with at the time and Peta went to special needs kindergarten and things like that. And they gave you the guidance and that's really all you had and your own gut feeling and to have faith in your child of the ability that they could do.
Peta [00:10:25] I mean, I know when I Google cerebral palsy and you look at the images, they are scary, like I to me, I don't even look like my diagnosis because I don't look like me. So I'm very happy that you didn't need to see those. So what do you what would you like to do? What do you think we're doing right now for Mother's Day?
Lorraine [00:10:44] We're going out for breakfast on Mother's Day because Peta birthday is the day before.
Peta [00:10:49] Yes. Spoiler alert, everyone. That's always been a big thing on Mother's Day. The poor thing doesn't even get a real Mother's Day because it's often about my birthday and not about you. Has the meaning of Mother's Day for you changed?
Lorraine [00:11:04] Oh, totally I look back now prior to you being born and I love my Mum. And often life would be a challenge and things have been my life. And I'd be busy with Clive being away and coming home. And I'd bring Mum and say, Hi, Mum, I'll see you tomorrow because, you know, Clive's flown in or whatever, and we're doing this at the other. And it wasn't till you were born that I sat there on Mother's Day and had tears in my eyes and thought, gosh, what have I done to my Mum? And then it meant so much to me about being a Mum on Mother's Day.
Peta [00:11:35] And like, did you find before you had me, because obviously I took a while to arrive, did you find Mother's Day hard? As someone trying to have a child?
Lorraine [00:11:47] No, I didn't find Mother's Day particularly difficult. I probably found nearly every day difficult because you know, I had tried for a long, long time and gone through lots of operations and things to, you know, get you here in the world.
Peta [00:12:04] Which, you know, it all worked out in the end, which is quite funny. Like, I always feel a bit guilty when people talk about having children with IVF because I feel like, you know, I'm the IVF child, but on the IVF child with a little bit extra. Like, you know, I wasn't exactly what you were bargaining on. So I always have to be very exact when I talk to people who are going through IVF and say my cerebral palsy has got nothing to do with having IVF.
Peta [00:12:35] What a day in life like?
Lorraine [00:12:38] To get you to primary school obviously was an effort I had to get you up, get you dressed and present your breakfast, do all that sort of thing.
Peta [00:12:46] When you say, get me up. Like physically I can't stand up. So you're physically lifting what a 10 year old you're physically lifting me. No wonder you've got a bad back. You're physically lifting me. At the time, we weren't living in a very accessible house. It was a double-storey, you know, a normal house in a lovely area. But it was not accessible by any means. And we did not have an accessible bathroom. So if I woke up, we had to lift me out of bed, lift me onto the toilet, help me brush my teeth. I could physically brush my teeth. But you had to pass everything to me.
Lorraine [00:13:24] Yes. And then we had to then I put you on it. We had a chair lift that went upstairs. So I had to physically lift you on that. You back onto a wheelchair. We had then two steps going up into a family room, which we then put down a ramp,
Peta [00:13:38] which wasn't very safe, but just got us through it.
Lorraine [00:13:41] Then I pull you up.
Peta [00:13:43] So then I don't even remember how you used to transfer me to my electric chair to go to school.
Lorraine [00:13:48] I lifted you
Peta [00:13:50] So what are we up to like twenty lifts and it's not even lunchtime.
Lorraine [00:13:53] And then I had to push a ramp out of the back of a station wagon to lift you into the car firstly, put the ramp at and then recline your wheelchair and then drive that into the back of the car to get to the school. So that was before you got to school. And then I breathed a sigh of relief and then I went riding on my bike. You know, I had my free time when Peta was at school, which I just loved. And then I put my mother hat back on again, pick Peta up, do the same sort of principle, lift her, to put the wheelchair in and out of the car. Often we would head out to therapy probably three times a week.
Peta [00:14:31] We're not talking psychological therapy. We're talking physiotherapy
Lorraine [00:14:36] Physio mainly and OT and swimming.
Lorraine [00:14:39] It was very much like to me it was working on my disability. I hated it. It was awful because it was never there was never a sense of achievement because it was all about maintenance, making sure I could do, and develop my skills. But as soon as I had two weeks off, I lost all my strength. So I found it really frustrating. I'd be like, oh, I know we've got to do it, but like, are we achieving anything right now?
Lorraine [00:15:07] I do a bit of tough love. We sort of probably push Peta into a lot of things to try and get her developed as much as she could. But she did have some super physios on the way through that was good fun. We had Friday nights off and the weekends off. Friday night was always drinks with the parents.
Peta [00:15:28] I have to say again, we were busy. Friday night we always catch up with people. Always, always. Well, you like I know a lot of people sort of might assume because I'm an only child, I had a very boring childhood and I was lonely. But because when you have a disability, it's so much focus on a child with a disability. And of course, it was for me automatically because I'm an only child, but there was never a chance for me to be lonely because I was off to go see this physio enough to go see this specialist. And I was just going to appointments. And like I know everybody thought you were a single mother.
Lorraine [00:16:11] Clive was always travelling and working overseas.
Peta: [00:16:14] Don't get me wrong, I really want to make it clear that Dad's been a fantastic dad, because the way we're expressing now, it sounds like he was never home.
Lorraine: Every Friday night he would fly home regardless of where he was and have the weekend with us.
Peta: And it was back in the day there was no such thing as emails. We didn't take business calls during the weekend like he was totally there with us.
Lorraine: Yes, he was a super dad. Even if Clive was not around, we would go in the July school holidays with a girlfriend at the time and her children and used to have a great time. We had super family holidays together.
Peta [00:16:29] We did. And like when I say that you came across as a single mother, I think it was often because the position that you were in was so unusual that you still were with your husband. Like there weren't many kids in the children's hospital that had both parents. So I've always felt extremely lucky that both my parents were together. When you nervous when I started kindergarten, as far as how the other mothers would approach you? Did you get the petty eyes? Like, oh, she's the one with the disabled child. Poor thing.
Lorraine [00:17:06] When you got to go to kinder, you were so confident you were the one that was taking off in the K-walker and all the kids were outside crying and the mothers were hanging onto them. You didn't want me at all. So I didn't find that at all with the parents. The difficult times were you got invited to parties. I had to go along because obviously, I had to lift you on and off seats and do things like that. And that was always difficult because I was the odd mother out at lots of times with the person having the party and
Peta [00:17:38] not understanding why you needed to come?
Lorraine [00:17:40] Yes. Every time Peta going to a party at a park, it was just, oh, my gosh, it was horrendous because then I was lifting on and off play equipment the whole time as well. She had an electric wheelchair when she was five So that made a huge difference but up until the time we got the electric wheelchair, it was pretty hard work. Peta had been in for an operation and had plaster on both of her legs and had a pole between her legs of about 18 inches to keep them apart.
Peta [00:18:17] I tell you what, I have to find that photo as well. That was a shocker. I don't know how I coped. Like, seriously? People say that I'm strong and resilient now. I don't know how five-year-old Peta dealt with that, plaster.
Lorraine [00:18:30] I was in K-Mart I was at the counter and had Peta in front of me and in the pusher with the legs in the plaster, and the guy tapped me on the shoulder and he said, what sort of a mother are you to let your daughter get two broken legs? I said, I'm a very good mother. My daughter has cerebral palsy. So how does that make you feel for the day?
Peta [00:18:50] To me, for you to have that ability to go back at that person straight away and go back? Like, how do you feel about the fact that my child has cerebral palsy? Like, again, it just shows how strong you are as a person. If there was anybody listening right now that is either pregnant or has a child with a disability. Is there any advice that you would give them?
Lorraine [00:19:14] Always have faith in your child and let them achieve their ability, which they have the potential to do and never give up on them. Just, you know, and love them and they will come through, without a doubt.
Peta [00:19:29] Is there anything else that you can give themselves to get that inner strength that you've got,
Lorraine [00:19:35] take the time that with yourself and be yourself and enjoy what you like in yourself and take some time for yourself because that is important. And I know it's very hard. The only time I ever had was when Peta went to school. No one ever offered to really look after Peta. I had a couple of friends that would. I was asked one time how I coped with having a disabled child.
Lorraine [00:19:58] Can I just preface that this was in the 90s? There was no such thing as you know, really mental health or self-care or anything. What did answer Mum?
Lorraine [00:20:07] Well, they asked me how I coped, and I said, while I'm preparing the dinner for not time, I have a Jack Daniel's and coke. And that's what got me through every night. And I'm not an alcoholic and I seldom drink now, but I did for a little while.
Peta [00:20:23] If you ever have any other questions for Mum or myself, please get in contact. She's not going anywhere. As far as I know, she's my mum for life, so we're all good there. Happy Mother's Day to all the mothers out there. And I'm especially thinking of those who are trying to be mothers or can't see their mother on this particular day. Thank you all, everyone. And I will see you again on Tuesday.
Peta [00:20:46] Bye. Happy Mother's Day.