Automated Transcript Episode 19
Episode 19: Life changing neonatal diagnosis
Speaker Olivia Gordon
Please excuse any errors as this transcript has been automatically generated
Dr Olivia Kessel (00:05):
Welcome to the Send Parenting Podcast. I'm your neurodiverse host, Dr. Olivia Kessel. And more importantly, I'm mother to my wonderfully neuro divergent daughter, Alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, I've uncovered a wealth of misinformation alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks. Each week on this podcast, I will be bringing the experts to your ears to empower you on your parenting crusade.
Dr Olivia Kessel (00:46):
Today we will be speaking with Olivia Gordon, author of The First Breath, who will share with us her experience, a veering off course of a normal pregnancy, and taking a very different parenting path. This episode will resonate with all parents who've been faced with a life-changing diagnosis and the struggle to move beyond the diagnosis and the fear that it invokes to the realization of the amazing, wonderful child in front of you. Welcome Olivia to the Send Parenting Podcast. It's great to have you here today. It's great to have someone with my name on the show.
Dr Olivia Kessel (01:28):
I know Olivia, it's not often at my grand old age you meet another Olivia
Olivia Gordon (01:34):
I know it's one of the most popular names nowadays, isn't it?
Dr Olivia Kessel (01:40):
it's really lovely to have you here today. Your son Joel, holds a very special place in my daughter's heart. She always says to me, "you know, Joel has my back mommy, and he knows that I’ve got his as well." And they have a really lovely friendship together. So, it's really nice for you to come on the show today and share with us your experience with Joel in terms of his health. I understand he was born prematurely, with several health conditions and it would be great to understand what you went through and how you traversed that journey.
Olivia Gordon (02:17):
Yes, absolutely. So we found out when I was 29 weeks pregnant that he was very sick. Our unborn baby had a condition called hydrop fetalis. Which is a scary condition. Immediately we found out, the local hospital we were at just seemed completely appalled and stunned by this diagnosis that came about with a scan. I was 29 weeks pregnant and had a stitch like sensation in my abdomen to phone the midwives.
Olivia Gordon (03:13):
I guess I was just being paranoid because I was quite an anxious first time pregnant mother, as well. So I just thought”, well, I'm just being really cautious and careful here. Go in, get it checked out and then go home and get on with signing up for your antenatal classes. And so I went in and was kept in hospital overnight. They said I could go home after I had had a scan. And then at this scan they found out that our unborn child had this really scary condition called hydrops fetalis, where he had fluid accumulating in different parts of his body, including around his lungs and under his scalp. This fluid was stopping his lungs from developing. And I had too much amniotic fluid as well. So his whole lymphatic system wasn't working.
Olivia Gordon (04:03):
Everyone at our local hospital all seemed completely stunned by this and worried, which was very frightening in itself. And then we quickly got referred to the amazing specialist fetal medicine unit at University College Hospital in London, where they did more scans and basically did an invasive treatment. They inserted a drainage tube through my abdomen, into my uterus, into his chest wall to try and drain out some of this fluid that was stopping his lungs from developing. And unfortunately it didn't work. It partially worked for a week or so, but then it, it failed, it ended up all the way inside his chest instead of halfway in, halfway out. So it stopped draining. And then he was very suddenly born prematurely at exactly 32 weeks and went on to spend the next five months in the neonatal unit at that hospital. And they were absolutely brilliant.
Dr Olivia Kessel (05:14):
Wow, that's quite a dramatic start to first time motherhood!
Olivia Gordon (05:21):
Yes, it was really frightening and terrifying. It was the hardest thing my husband and I had ever been through. And I don't think any parent expects to have a child with any kind of serious disability or health problem. You just don't necessarily expect that to happen. You have all these dreams of what it's going to be like, and you see yourself going through the kind things that everybody else does that the pregnancy books tell you that you are going to go through. And then suddenly you find yourself veering wildly off course. And for that period, especially between when we knew he was very sick and before he arrived, we didn't know if he was going to survive - he had a 50/50 chance of survival. And I just remember feeling like I wasn't even a proper pregnant mother anymore. You know, I just felt like I wasn't like everyone else anymore. I immediately knew life would never be the same again.
Dr Olivia Kessel (06:21):
And how did you cope with that? How did you move forward?
Olivia Gordon (06:32):
It was really hard. I was really depressed, to be honest. There wasn't really time to cope in any way. I remember that period of wait, between having that shunt and trying to keep an eye on the situation, the doctors were keeping an eye too. I just remember praying, even though I'm not religious. I remember a lot of time just being at home, trying to lie down and rest. And my mind going into overdrive. I probably didn't really cope very well. I did all the wrong things to be honest. I googled and condition, and immediately saw the word as fatal. My husband was able to cope with it all much better.
Olivia Gordon (07:14):
He just didn't Google. He knew he was wise enough not to do that, but I just made all the mistakes basically. And then even after he was born, the worry continued. Nowadays, a typical 30- or 32-week premature baby is not severe, but because of his condition, the doctors were really worried about him and it turned out that he had a lot of other complications. He ended up being diagnosed with Noonan Syndrome, which is a genetic condition. So overall, it ended up being a much rockier start than most 32-week-olds. We hoped then that this was going to be a one-off kind of situation, then life would go back to normal. Once we got that diagnosis, we knew that our family's life would be affected throughout our whole life. We knew all our lives would change. So that was quite intense.
Dr Olivia Kessel (08:17):
Yeah. And, and as you said, there's, a way you thought it was going to go and…and that vision for the future which all those pregnancy books predicted just changed irrevocably.
Olivia Gordon (08:30):
Absolutely. I think that gets to the sort of core of all the kinds of emotions that I felt like - I felt guilty , almost a feeling of jealousy over other mothers whose babies had been born in premature, - I know that sounds silly, but this is the range of emotions that was going on. Moreover, once we had a genetic condition diagnosis, It got even more difficult. Because I watched the other babies get better as they came to the period where they would've been born and go home. And I saw my son still very sick and I just didn’t know what to think, especially after getting given a diagnosis like that, you really don't know. I think, looking back, my reaction was very typical, but in the moment or at the time it happened, I didn't know what typical was.
Olivia Gordon (09:24):
So, I made these mistakes of Googling what to expect, what it means for you when your child has these conditions. And all I had was print outs from the NHS website and Google. It was a very frightening situation to be in. And I just wish I could now go back to how I was then and reassure myself and I wish I could have known how my son was going to turn out. But at the time I was so frightened for him because I got given a list of all the possible things that could go wrong, all the possible health issues that that person can have. And you don't realize at that moment that not all of it is necessarily going to apply to my child. But it's very hard to take in.
Dr Olivia Kessel (10:23):
Did they give you any counseling or were you supported by the hospital? Or was it literally a printout of, the worst case scenario?
Olivia Gordon (10:34):
There was some counselling. To be honest, there probably wasn't as much counseling as there should have been. I think they probably realized that with time. I think probably things are different now and perhaps there's more general understanding around what it's like for parents getting that kind of news. But at that time, it was quite unfortunate as I recall that when we got the news about the diagnosis, the geneticist that we were going to speak to was away on holiday, I think for a week or 10 days at that time. So, we had long enough for us to just get all the information from Google and fill my mind with things that probably weren't relevant. I suppose it would've been more helpful for me to just speak to an expert very quickly at that point.
Olivia Gordon (11:26):
But I didn't unfortunately have that opportunity to do so. And even in a neonatal unit, I think even though they have a lot of families who are getting those kind of diagnoses, it's still like a less common experience. Most of the babies are purely having prematurity or that sort of a health issue, but it's not necessarily a genetic diagnosis. So I don't think they necessarily have all that much experience with supporting families in this situation because something like Noonan’s is again, quite unusual compared to even something like Down Syndrome, which is much more well known. But something like Noonan Syndrome, they hadn't had many babies with Noonan syndrome, even in that really leading neonatal unit.
Dr Olivia Kessel (12:13):
There’s a big unknown in terms of what your future will look like. Was there a question even if Joel would survive the time that he was in the ICU?
Olivia Gordon (12:23):
Yes, sadly, there was. He went through so much; it was so traumatic. I think one of the worst moments was the first time I gave him a bath. I think this was when he was about three months old, and he'd been in an incubator, and they don’t normally bath babies. But they had to be very careful about their temperature. Anyway, he'd had his first little bath in one of those little bathtubs and put him back in the incubator. And then suddenly, the nurse looking after him sounded an alarm. Everyone had to leave the room. I didn't know what had happened. She'd spotted something was going very seriously wrong. And the next thing we knew, someone came and told us that he was having a heart failure.
Olivia Gordon (13:12):
Basically, his heart rate had started climbing and they couldn't bring it down with recommended medications. They tried I think three different medicines. The third one worked. So, they saved his life many times. That was just one of the scariest moments. So, there were so many times where you just - and it's so typical for anyone who has that kind of neonatal experience - where you just go in the morning and you find yourself asking -, “how is he?” And they say, “well, oh, there's markers of an infection,” And it could be anything. They're so vulnerable, these babies. It's very frightening. And just, you know, as we all know from covid, I got very anxious about any chance of me passing any kind of cold onto him or any germs or anything like that. So, it made me very hypervigilant. A part of me came out and you must wash your hands all the time anyway and use hand sanitizer. My hands were just raw and red from just sanitizing so many times. You can't just hold your baby; you know I had to get permission to hold him and then they're just so fragile. I was scared to even touch him in case I gave him some sort of germs from the outside world.
Dr Olivia Kessel (14:34):
It's a real frightening rollercoaster of emotions and I'm sure you're feeling love for him and fear for him and just total confusion.
Olivia Gordon (14:47):
It's total confusion. And I can't stress enough just how traumatic that is for parents and mother and of course with the baby. The fact that it's that separation. And I think, again, this has changed a lot. He's just turned 12, so this is a while ago now, but I think things have changed massively in the neonatal world since then. But, at that time, we weren't allowed to stay overnight with him. I didn't get to spend the night with him. I couldn't lie down next to him. I couldn't go outside with him. He didn't get to have fresh air. He didn't get natural light really. He was tube fed. So his whole experience was so unnatural and our whole mother baby experience was so unnatural.
Olivia Gordon (15:37):
When he was born, you know, the first thing you want to do when your child is born is you just hold them and count their fingers and toes and look at them and just breathe them in. And I didn't, you know, he was just taken away immediately. So I just got a glance and then a photo of him that first night. I was just sleeping with a photo of him. And that's again, quite typical, I think, with this kind of experience, but it was just so hard having that kind of separation.
Dr Olivia Kessel (16:06):
Do you feel that that affected your bonding with him? Or was the bond still strong or, I can imagine that that might affect the bonding.
Olivia Gordon (16:16):
We've always had a most incredibly strong bond. It wasn’t so much affected, our bonding, but I think it was just so hard doing everything in public as well. Because again, later I went on to have another child who didn't have these kinds of health conditions. You just get to take them home and you… it's hard to explain, but you, you're not really kind of doing everything. You are being a mother on your own and baby in your own little space, in your own little bubble. Whereas in that situation, in hospital, you are never alone with your baby.
Olivia Gordon (17:03):
So, it felt like you are always being watched and the nurses are always writing down their observations and they'll write a lot of things down. They'd write down things like, “mum held Joel for 30 minutes.” “Mum was crying”. You know, things like that. It just feels a bit like being on stage all the time. You never really relax. Then there's all the sorts of social interactions with all the other parents and all the doctors. So, it's a bit like being institutionalized, basically you're finding yourself in a sort of school or prison or something. I used to feel like I had this kind of magnetic connection with him. Like when I felt like I would get out of the tube in London at Warren Street and walk towards the hospital and I'd feel like this kind of magnet pulling me towards him.
Olivia Gordon (17:56):
And then it was so hard to leave him and I felt so guilty for having to leave him as well in the end of the day. With these nurses who were wonderful, but we'd phone up to say, how is he doing? And you'd be on hold waiting to hear and you just feel this awful sense of fear and dread. It’s hard to explain what anyone who's been through it felt like. It was just me not coping, but now I know that that's all completely classic to experience all of this.
Dr Olivia Kessel (18:30):
If you could look back and give yourself a hug or advice, what, what would you say to yourself?
Olivia Gordon (18:45):
I would just tell myself that all those feelings, all those terrible feelings are completely natural and not to feel guilty. Because I think a lot of it was just feelings of why, what is wrong with me? Why are all the others coping fine? All the other mothers are coping fine and I'm not. But actually they probably weren't coping as well as I thought either. And everyone puts on a kind of brave face a lot of the time. But think deep down, I felt like a lot of those sort of feelings that you're not supposed to have, like I mentioned, the jealousy. And, feelings of inadequacy and failing to cope. It's just too much. I can't deal with this unbearable, you know, if I felt so guilty about feeling that way.
Olivia Gordon (19:36):
But it’s all very natural. It's very natural when you haven't had a chance. Your baby is in that situation like a bit of a stranger really. Because although you have this incredibly magnetic bond like I mentioned, you also haven't really had the chance to really get to know them. And then they've got this diagnosis that's been placed on them. And it took me a while to realize that that didn't change who my son was. And the fact that he was my, he was still my child, I was still his mother. We were still exactly the same people. But it probably took me a while to realize that because when you get that diagnosis, you just think, oh, is this someone's place? This label on? Is my baby going to be this and this and this? And actually I realized he is who he is. He is himself actually at the end of the day. And as he's got older, and I've met lots of other people with noon syndrome. Either everyone has noon syndrome and is different and there's no like, typical person who has Noonan syndrome. So, you don't realize that at the beginning. You see what I mean?
Dr Olivia Kessel (20:47):
Absolutely. And I think I know exactly how you feel. My daughter, when she was diagnosed with cerebral palsy, exactly the same thing. I'd known her for nine months before she got that diagnosis. And I looked at her, I was sobbing. I looked at her MRI, I was like, you know, I, I'm a doctor, this looks terrible, you know? And then I went on to a health forum and then they said, “look at the child in front of you.” Not what you've read, not what you've looked up. Look, it's still the same child, it's still the child that you love. And, and that was really powerful. But I imagine that's even harder if you haven't gotten to know your child first, but you've got the dream of your child. But yeah.
Olivia Gordon (21:23):
That's the thing. Because like when we got the diagnosis, I think he was six weeks old, so, and he was still in an incubator. I'd hardly ever held him; he was still too fragile. I didn't even get to hold him for the first 10 days or so. So, he was on a ventilator. And then on C P A P, it's just hard to, to understand and to get your head around.
Dr Olivia Kessel (21:52):
It sounds like you went beyond the diagnosis, and you went beyond the lists, and you eventually got to take Joel home. What happened next and how did it unfold?
Olivia Gordon (22:10):
So, it was just so wonderful when we got to take him home. He was born in January, and we brought him home in June. So, five months later, seasons had changed next summer and just got to take him to our little park around the corner from where we lived, which we'd been telling him about for all that time that you're going to see the clouds and the sky and the flowers and the squirrels and everything in, suddenly we got to do it. It was just wonderful. But of course, it wasn't all smooth sailing because he still basically for his first two years, really didn't have normal infancy at all because he was still quite sick. But he still had discomfort a lot of the time, had issues to do with his stomach.
Olivia Gordon (22:54):
He was gastrectomy fed, so through a tube in his stomach. And, he'd had a major abdominal surgery at Great Ormond Street. And so, he couldn't do a lot of the things that he wanted to. Then part of me wanted to snap back into the parallel life. So I started going to the NCCP coffee mornings and the baby yoga and baby massage, but quite quickly realized that that normality was not going to be for me and my baby, because my son didn't like baby yoga. It made him cry, you know, he didn't want to be rolled around down. I remember we had to do something where you roll the baby down your legs and he started crying because I guess that that wasn't comfortable for him.
Olivia Gordon (23:45):
Big noisy singing groups made him cry. Other mothers I met were nice locally, but they hadn't been through anything similar. So, it was quite a lonely experience, I think those first couple of years. But we had a lot of medical support, a lot of doctors involved and visiting nurses and so on. And things gradually got easier as he got older medically. So, he had quite a few operations when he was little including open heart surgery when he was four. And since then, he hasn't needed any more operations and hopefully he won't any anymore.
Dr Olivia Kessel (24:32):
So that is an incredible start to life and an incredible start to motherhood for you as well.
Olivia Gordon (24:41):
It is, and I often feel like now he's 12, I feel like I'd want to say that it's not even just about that experience happening at the start of life, because I feel like it continues to affect someone for years afterwards. It affects, still affects me and my husband just thinking about it, talking about it, having been through it. And I think it affects my son now. And I think it's hard to explain all the different ways, but those early experiences are so formative if you think of a typical child. They should be held and cuddled so that they feel that security and safety that comes from immediately feeling safe and held. Those neonatal babies didn't have that.
Olivia Gordon (25:50):
So, they went through uncomfortable, painful experiences, unpredictable experiences. Loud noises, not held, separated from their mothers. It's a seriously traumatic experience for them. And I think there've been studies that show that, that does affect a child's neurodevelopment. And sometimes now when things are hard for my son, I just think, well, gosh, he's just been through so much. I always just remember that and just think if he finds things, sometimes he's a bit behind others now. And I just think, well, you know, there's a good reason for that. Because in his first two years, he didn't have what the other children had. He didn't have all those advantages that other children have - just ordinary children. He had to spend those first two years going in hospital and in discomfort. And so in a sense he didn't have those first two years of his life in a way. It was like he had them, but he didn't have all those so-called normal experiences.
Dr Olivia Kessel (26:59):
Yeah. And how, how that's impacted him and you.
Olivia Gordon (27:04):
Yeah,
Dr Olivia Kessel (27:06):
And for my experience with him, he still has a huge smile So he's a miracle because looking at him as an outsider, he's got such character and such personality. That's happy.
Olivia Gordon (27:28):
Oh, he's such a happy boy and he's just come so far. He's doing brilliantly. And again, I just wish I'd known that back then that he would. But I just think sometimes he's quite young for his age, which is quite typical for someone with Noonan’s. And, and perhaps someone who's been through all that kind of experience, it kind of helps to explain why, although he might be turning 12 right now, he may not come across like a typical 12-year-old. He's very bright. He may find some things harder than others. He's not neurotypical at all. And I think it’s probably given him a very different starting life.
Olivia Gordon (28:25):
And I just think one of my wishes is that schools and people in education and the councils who create these EHCP would understand. And even doctors who see children as they're getting older, would just understand what these children have been through and how it can still affect them even a decade or maybe even two decades later. It might still be affecting some of these people. It might not affect everyone. The word I was looking for earlier was attachment. Like if you believe in the ways that that whole psychology of how babies attach and feel secure - that that was taken away. I still feel like there's a part of me that I wouldn't have, of course I can't do anything about it.
Olivia Gordon (29:14):
You know, I couldn't have changed it because I know they had to do that to save his life. So there was literally no alternative but for him to miss out on that early attachment experience. But essentially, he missed that attachment, which I think is just tragic. But I do think that neonatal units have changed and are much more careful about these things now than they were back then. So, they now understand this, and they try and avoid loud noises, for example. Sudden loud beeping noises in the hospital, noises around these babies, for example. And they try and promote as much holding and closeness and parents being able to sleep next to their babies as possible, which wasn't possible when I was going through that. Because they understand that, how much that changes, how that affects the person.
Dr Olivia Kessel (30:06):
And how important that is. Yeah. And to have that understanding going forward, as you say, from an education, from a health perspective, from a social perspective that compassion of what he's been through.
Olivia Gordon (30:25):
Yeah. I think people sometimes just expect him to manage. I’m his mom. So I'm always going to see things sort of trying. I'm always going to have that wish for people to see him with understanding in compassion. But I just feel like sometimes people just do not understand what he's been through and why would people understand? Because they don't know what it's like going through that.
Dr Olivia Kessel (30:50):
But judgment usually happens from a lack of understanding. Do you know what I mean? So, I think I can say the, it's important for people to understand and have compassion. And I know like Alexandria with her cerebral palsy and, and even when she had splints on her leg and you know, people were like, what is that? And the kids can just be cruel, not even intentionally cruel. And teachers too don't understand. So, I'm like, let's go in and let's explain what happened to you when you were little. Let's explain, you are getting very sick. Let's explain you being in the hospital. And, and I have pictures that we showed and then asked everyone in the little group, do you have any questions? And their questions had nothing to do with the, with the condition. “Can you get in different colors and how do they make that, you know, is it made of wood?” Their curiosity was elsewhere. And then once they had that information, compassion was there and immediate. I wouldn't mind one of those too - type of thing. Having that understanding is so important for me. Once, once people have that understanding, it's amazing. You know?
Olivia Gordon (31:59):
Absolutely. I think that was such a brilliant thing that you did, and that Alexandro did to explain that. And it's a very brave thing to do as well because to have any kind of difference or disability can make a child feel so vulnerable. And because especially around this age of 11 or 10, 11, 12, children just want to be like others and fit in. And it's so hard to have some sort of difference of any kind. And then to be so brave as to explain it. But I hope that she found that understanding that she deserves. And my son did something similar at his school and hopefully got some understanding. But as you say, it comes in a slightly different way from children where they don't necessarily focus on certain aspects rather than others.
Olivia Gordon (32:56):
But ultimately, it's, it's quite hard for someone, I think for a child who's been through serious trauma, it's hard, like medical type trauma, it's hard for other children to understand that because other children have just don't understand what that means. And I don't blame them for that at all. And as you say, it's not cruel, it's not mean comments or anything, it's just not necessarily understanding why someone might, might be a bit young for their age or might not have grown as tall or something like that.
Dr Olivia Kessel (33:36):
I say to my daughter because she's 11 and she loves still playing with dolls. And I have to be honest, I played with my dollhouse till I was 13. So, whether it's related to both of us being diverse, I don't know. But we took a long time to grow up and so she has her dolls, and she walks outside with them, and she gets people staring at her - they look real, these dolls. And she said to me, “you know, she's maybe's going hide it.” And I said, “you know what, Alexandra, you just be proud of your doll. If you want to take your doll out, you be proud of it.” And so, we were walking another day and she goes, “you know what mommy, I'm going own this.” And I said, “you own it”. So, as tough as it can be sometimes, sometimes it can strengthen them as well to get there and be different. That's what I say to her. “You can be different, you know, be proud of your differences, you know?”
Olivia Gordon (34:23):
Absolutely. And I think with Joel as well, there's like a definite part of him that's very resilient and very tough. That is, he does accept that he is different and he's happy with that and he likes to be different and that's fine. For him, I'm guessing there' a drive to fit in and to be like other people, but there's also a pride in having a unique experience and worldview and like something like that TV show, Pablo, I don’t know if you've ever seen that - it’s like a cartoon on BBC about an autistic boy. And theme says that Pablo sees the world in different ways. And when my son saw that, he loves it when he sees disability represented anywhere.
Olivia Gordon (35:14):
Yeah. So, if he gets a Lego set and it has a character, he's in a wheelchair, he'll just feel really happy. Or if he sees this program for Pablo, which just, even though it's aimed at younger children, he's watched it repeatedly, because it's just so wonderful for him to see a character on TV who's autistic. And Pablo sees the world in different ways. And I think that's the way he sees himself. You know, I see the world in different ways and, and he sees that as a positive thing because when you see it on tv or in a Lego set, it's empowering because it makes you think, yes, that's okay. I do see the world in different ways. And that's a good thing. That's okay. It's not something to be ashamed of.
Dr Olivia Kessel (35:56):
And it's, it's good because it's coming into mainstream more and more. They had Rose who is deaf on Strictly Come Dancing. My daughter was excited. And they had on British got talent, a girl who had cerebral palsy and she, she's just like, Joel, she's like, “Yay”. You know, like, uh, go there. Like that's who I want to win. Mommy.
Olivia Gordon (36:17):
Absolutely. Ellie Simmons was huge on Strictly Come Dancing for my son and my daughter as well. Because she's totally supportive of him as well. And just great to see how much support there is from the public as well. Like when people who have disabilities are represented. It's amazing.
Dr Olivia Kessel (36:39):
And brave enough, you know.
Olivia Gordon (36:42):
Yeah. It really helped; it really does make a difference. It sounds like I'm not just being kind of politically correct here. I mean, it really does make a difference I think, because I do think for a child, to have any kind of physical or noticeable disability can be tough. But then to see it kind of presented in a positive way, autism or ADHD or doesn't have to be a visible thing, you know, something that makes them stand out in any way. It's just great to have that kind of representation.
Dr Olivia Kessel (37:17):
And have that understanding, you know, because it, it is about understanding and it's about enriching your life with different people of all shapes and sizes and colors and neurodiversity. They all bring something to our life. If we're all the same, it would be a dreadfully boring place to be. And I'm happy that we live in a place now where we do accept that differences exist. And I wonder if one day it's going to be the different people that are the majority and it's going to be the people who maybe have had too much of an ordinary life, you know? That's the thing.
Olivia Gordon (37:55):
Because I think I, that's one of the things I've said to Joel - I believe the fact that he's been through so much has given him a lot of strength and compassion for others. And he is such a nice person. Obviously, every mother thinks that about their child, but he's genuinely not got a mean bone in his body. And he would never make a mean comment about somebody's appearance, for example, or about something that was different about someone who's sensitive. You know, if he sees somebody who's got something a bit different about them, he'll be sensitive about saying anything or how he treats them. And I think, I mean, so he's mature, you know, it gives someone a lot of character and maturity, emotional maturity, to go through things like this that I've slightly lost track of what we…
Dr Olivia Kessel (38:46):
I completely agree. And I think that's a great way to end this show. We should all be kinder to each other, and our children teach us that. And it's through their challenges and their struggles. And, for you and for me as well and for other parents, the challenges that we face, as hard as they are, the fears that we face, as hard as they are, the level of patience we must exhibit, it all makes us into better parents as well. And thank you for sharing your story with us today. It's been a real pleasure.
Olivia Gordon (39:23):
That's an absolute pleasure. And I should have said as well, he's also just so creative and brilliant and he's just got such an amazing mind. And again, that neurodiversity gives him that edge, something special, something different that is truly brilliant. And again, I'm just so grateful to have a child who has that unique way of seeing the world.
Dr Olivia Kessel (39:50):
His superpower.
Olivia Gordon (39:52):
Yeah. Although he doesn't like to refer to it as a superpower, because he doesn't like any kind of idea of being patronizing. But he sees right through it when people are like, oh, that's your superpower, having special needs kind of thing. But he doesn't want it to be like that.
Dr Olivia Kessel (40:17):
I know, I agree with him. Why do we have to label it? He's who he is. Yeah. I hear him, you know that. I agree. But it's not a disability, it's not a superpower. It is who they are.
Speaker 3 (40:30):
It's
Olivia Gordon (40:30):
It’s hard to put into words.
Speaker 3 (40:32):
<laugh>
Dr Olivia Kessel (40:35):
Thank you so much. Send Parenting Tribe. I hope you were as inspired as I have been listening to Olivia's story of moving beyond a life-changing diagnosis. If you are new to the show, please press follow to Access our weekly podcast. And also please reach out on Instagram and Facebook, let us know your thoughts and give us feedback. Wishing you and your family a happy week ahead.