A heartfelt story about Downs Syndrome with UK Solicitor Claire McGrath
Welcome to the fourth episode of The Brain Game Changer podcast. I am your host, Melissa Gough. In this week’s episode we headed to London in the UK, where I had the pleasure of speaking with Criminal Defence Solicitor, Claire McGrath. Around 15 years ago I participated in some work experience with the firm Claire was employed at, whilst I was considering moving into law after completing my education degree.
Time has passed, and I veered off in a different direction, however, it has been wonderful connecting over recent times. In this episode, Claire, also a partner to Oliver and mother to two boys, shares the experiences surrounding the birth of her boys, motherhood and her journey as a family when Finn was diagnosed with Down Syndrome post birth. We discuss recent UK law changes, public figures who are shining a light on raising awareness about Down Syndrome and Claire’s purpose to also spread up to date, accurate and educated information to the mothers and families who need it.
This is a very heartfelt, honest and sincere conversation.
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Hello and welcome to an episode of The Brain Game Changer: where heartfelt stories, awareness and education can change the game. Each week we delve into the experiences of amazing humans, advocates and organisations from all walks of life, who share their adversities, the triumphs after tragedy, the milestones and those brain game changing moments right here in front of the mind. Through this journey together, we may find that we can learn some valuable tools, knowledge or education that will lead us into becoming game changers for ourselves, or someone around us or even for our community. My name is Melissa, thank you for inviting me into your space. It is great to be with you.
Melissa Gough 0:56
Welcome to the fourth episode of The Brain Game Changer podcast season one. In this week's episode, we headed to London in the UK, where I had the pleasure of speaking with criminal defence solicitor Claire McGrath. Around 15 years ago, I participated in some work experience with the firm Claire was employed at whilst I was considering moving into law after completing my education degree. Years have passed. However, it has been wonderful connecting over recent times. In this episode, Claire is also a partner and mother of two sons. She discusses the experiences surrounding the birth of her boy's, motherhood, and a journey as a family with her partner Oliver when Finn was born with Downs syndrome. We discuss recent UK law changes, public figures who have shone a light on raising awareness of Down Syndrome and Claire's purpose to also share up to date accurate and educated information to the mothers and families who need it. This is a beautiful and heartfelt interview. And I feel very grateful that Claire was happy to sit in front of the mic on this podcast to do so. Let's get into the interview
Melissa Gough 2:11
Good morning in the UK, Claire and welcome to The Brain Game Changer podcast. It is great to have you with us.
Claire McGrath 2:17
Hello, Mel. And thank you so much for having me.
Melissa Gough 2:20
I was so touched by your story and also what you're trying to do in regards to your little boy, Finn. But before we start and we go down that journey of the reason why we're here, can you just tell me a little bit of a backstory, just tell me a little bit about yourself? What do you do?
Claire McGrath 2:40
Okay, so I'm right over the other side of the world in the UK, I live in London. I'm a criminal defence solicitor, and also mum to two boys who at the moment are eight and five. Our paths crossed when we came over to do some work experience with us many years ago. And here we are now.
Melissa Gough 2:59
I've seen you in action. We're very lucky to have you. You're amazing at what you do. You're a full time lawyer, you are a mum who's balancing everything as well. So I'm just going to go back to when you first heard the news that you were pregnant with your firstborn, Sebastian.
Claire McGrath 3:17
That was a really nice surprise. I remember it so clearly because we were literally about to embark on a European trip that we'd arranged, and we were so excited about it. It was still a good trip, but it turns out to have no alcohol involved, which was a shame for me, because that wasn't quite what I had planned. But yeah, roll on seven and a half months later! I hadn't felt the baby move for probably about 24 hours, maybe a little bit longer, and I was a bit worried about that. So I went to the hospital to cut a long story short, he was brought by emergency C section later that day, because he had stopped moving and they had to just whip him out. It was quite a stressful situation because we didn't know the point where he was born. We didn't know whether he was going to survive or not. And whether we were going to have a live baby or not. So that was quite tricky and a difficult time. But luckily he was okay. They had a team ready to work on him straightaway, and he then ended up in the neonatal unit for a few weeks before we were able to take him home.
But that, yes, it was a bit of a shock to start motherhood. We weren't ready at all. I was on my way to court that morning and I diverted because I just felt something wasn't right. So no maternity leave, you know, he was six weeks early. So it was all a bit manic. But yes, he's now doing extremely well. And you would never know that he'd had that sort of crazy start. It was a bit dramatic, shall we say?
Melissa Gough 4:48
Thank you for sharing that because I can only begin to imagine. You've got your first child. You're already feeling all the feels, all the anticipation. You research everything that you do, you go to the classes, you hear your friends give their versions of events, and then you experience a totally different scenario.
Claire McGrath 5:08
It was certainly not the plan! You know, in his usual way it follows on from how he is now really, it wasn't planned at all. But we thought, oh, this works out well, because he's going to be born in September, he'll be the eldest in the school year, and that will be quite handy! Then no, we weren't having any of that! So he's an August baby in the UK. I'm not sure how it works over in Australia, but he's one of the youngest in the school year. So all of that extra sort of bits and pieces that he's had to contend with through being born just that little bit early. So yes, I can't complain, everyone rallied around. And you know, he's, as I said, he's doing absolutely fine now, and he's an excellent big brother.
Melissa Gough 5:50
Ah, that is beautiful. That is so beautiful to hear. And I'm so happy to hear also that you had so much amazing support, and everyone rallied around at such a difficult time. So Sebastian is home and you're adjusting to this new world. What was the timeframe between the two boys when you found out you're pregnant with your second child?
Claire McGrath 6:10
So Sebastian, would have been coming up to, three, maybe a few months away from three, at the time that I found out I was pregnant the second time. It was one of those scenarios Mel, where we always wanted more than one because we wanted him to have a sibling. But there never seemed to be the right time I was back at work, it didn't seem to ever be the right time. So we just thought, right, we've just got to go for it and see what happens. Then it happened. So that pregnancy, it was a completely different kettle of fish. Because of what happened with Sebastian, they just kept me really closely monitored, because they hadn't, they weren't really sure what had happened. The first time around, they couldn't be 100% certain, but we'd had sort of a debrief at the hospital where they'd said to us, if you'd have left it any longer, basically you wouldn't have your baby alive now.
I was sort of on high alert anyway, because of that, and especially as I got to the time when Sebastian had been born, the seven and a half month ish point, I was really like a bit of a lunatic, because I kept really overthinking the moving. Every two weeks or so, certainly, towards the end of the pregnancy, I was being scanned and checked, because they really wanted to make sure that the same thing wasn't happening again. And then at about 37 ish weeks, because I was going to be induced anyway, they decided that they thought maybe there were some changes, and that the same thing, whatever it was, may have been happening again.
They decided to induce me, which they did. It was a long process. Yeah. And then Finn was born. So that was in January 2017. I was all proud of myself, because I decided that I was going to have a natural birth this time. With a C section, because the first time around, I hadn't come into labour. I hadn't. I felt like I cheated in the process that I hadn't experienced any of the usual things. So I decided I'd be a bit different the second time. When he was born, I was all pleased with myself. And then he was handed to us. And we knew straight away the minute we saw him that he had Down syndrome, and that was a really difficult experience for us.
Melissa Gough 8:15
That moment, you've experienced, I guess, the traditions of a normal birth. He's a little happy bundle of joy. He gets handed to you in your arms. In that moment, you're just sort of like, oh, hang on, something seems different. And I think you described at the time that you waited until the midwife left the room, before you both decided to react with each other.
Claire McGrath 8:41
Yes, that's absolutely right. So we, what I now know, after we, we did speak to each other that we were both having the same thoughts at that time. But we didn't actually verbalise it to each other until we were on our own in the room and the midwife had left. So it was quite a period while they're sort of clearing you up and doing all the bits that they do. Then as soon as the midwife left, we sort of spoke to each other and said, ‘you know, and I kept, I knew it, as soon as I saw him, I knew, but I kept thinking, I've never seen a newborn baby before because we didn't see Sebastian straightaway.’ Maybe they look a bit scratchy or whatever. But we knew straight away, we did know, and it sounds dramatic. Even now thinking back, it seems completely bonkers. But we thought our whole world had ended, that we just felt like life sort of had ended, taken away from us. We felt absolutely horrified by the fact that this has happened to us. We were worried about the impact on Sebastian. You know, the first thing we were thinking about was that we'd chosen to have a sibling for him and what impact that would have on his life. It was a really, really difficult time. We really, really felt like it was the worst thing that could possibly happen to us. It was a really difficult time but because we felt that way, we had this little baby there. Thinking back, it's awful, really, because we did genuinely feel that way. And we struggled, we really struggled with it.
Yeah, he was gorgeous. The first thing and when I looked at him, certainly for the first few days, all I could see was Down Syndrome. I couldn't see past that. And so we were going through the motions during the feeding and all the things we had to do. Even to this day, now, when I look back at those photos from the first few days, I find them quite difficult to look at, because, you know, we're all doing the smiles and things but I know what the feeling was going on behind that. I know now it was a normal way to feel. I know that a lot of people who are in a similar scenario feel that way. And it's okay. But at the time, the emotions were really raw, really, really raw.
Melissa Gough 10:55
Claire, I have to say, thank you so much for sharing that. And I know you said I felt bonkers, but I think you sharing the honesty and the rawness of that moment will resonate with so many people.
Melissa Gough 11:14
So as a result of this, do you stay in hospital longer? Do you have to have different types of tests? Are there different types of care?
Claire McGrath 11:22
We were quite lucky because Finn didn't have any of the physical difficulties that sometimes people and children who have Down Syndrome have. So heart conditions are quite common. And there can also be issues with sort of bowel conditions and things like that which require very, very quick intervention, or early intervention and sometimes sort of care within the hospital environment up until the they can be until the operation can happen. But we didn't have any of that.
We were quite fortunate. And I think partly, we've had all those scans, so I think they probably would have picked up. If there hadn't been any issues around physical health, they probably would have picked up on those. So, the midwives sort of came in and went again, came in again and went again. And then a poor young doctor came in and at that point, we sort of tried to kind of do it for him. But I say, we've got to think we know what you're here to say. And they did a blood test to confirm the condition and confirm that, that's what Finn had. It took a few days to come back. But they kept us in the hospital. Specialised care was not required for Finn. He was just with me to make sure that he was feeding properly and all of those things. So we were in hospital for a week, and then we were discharged to go home.
Melissa Gough 12:46
Somewhere. Along the way. In society, we've either seen a child with Down syndrome or we might have watched a documentary about Down syndrome. I'm just going to explain it's a genetic disorder, because normal cell division results in an extra genetic material from chromosome 21. And chromosomes are like small packages of genes in the body. With Down syndrome, there's no significant reason. It's all by chance. And there's no known behavioural or environmental factors. And there's no Down syndrome in your family?
Claire McGrath 13:20
No. There is a certain type of Down syndrome called translocation which can have a genetic hereditary type of link, I'm not going to hold myself as an expert on that. But that isn't the one that Finn has. Finn has just completely by chance, there's nobody in our family that has had Down syndrome previously. It's one of those things. I think also, there's lots of myths that fly around in terms of what people think about what causes it, but it's just one of those things.
Actually, when Finn was born, I don't know if I've even ever met anybody that had Down syndrome, it wasn't something we were aware of, we were, I would describe it as completely ignorant about Down syndrome. With very outdated views about what it meant. As you say possibly from the documentaries, the historical, you know, position and how people were treated. We then realised, actually, that's not the thing at all, but one of the things that I think is quite a common misconception is that it's all older mums. I mean, I suppose I did fit into that category of an older mum. But I've met so many people in person and online through the Down Syndrome community that are young women rocking about with a lovely child with Down syndrome as well as older mums. You know, there's a massive community, a very supportive community, all that have wonderful children with Down syndrome.
Melissa Gough 14:48
At the time that you gave birth to Finn, you were 38 years old. So is that still considered? I'm going to do any talking brackets. Is that considered quite old?
Unknown Speaker 14:59
I think geriatric is the term that they use. So within the maternity sort of brackets of age, yeah, that was quite old. But I think it's quite commonplace now. I mean, I don't assume it's the same over there. But here, certainly people and their ages of having children has significantly changed because people are having careers and various things first. It didn't seem odd to me that I was having child number two at that age, because a lot of my friends have had children their child the same sort of age. But yes, I was very much classed as an older mum that time round.
Melissa Gough 15:35
It's amazing that we still have that type of language to use! To me 38 doesn't seem that old for women in the year of 2022, where women are having children in their 40s, where there's lots of amazing resources and facilities and amazing care to do so, in a healthy manner. I'm still shaking my head about 38! Claire is considered geriatric pregnancy! So you're at home. And again, you're adjusting to this new world, you're feeling all the different emotions, you've got this beautiful bundle of joy, a child with Down syndrome. How was it for you telling your family and friends at the time? Obviously, everyone knows you're pregnant? How was it for you at the time to share the news? What was your strategy? Was there one?s
Claire McGrath 16:29
I have to say that my partner, Oliver, took a big brunt of the telling people, because I was still in hospital. As you say, everybody knew that we were having this baby! From parents to friends, siblings, and then, you know, Finn had just started nursery. So we had a whole group of new sort of school mum friends that I hadn't known for very long. And we're obviously at the school gate everyday,waiting to find out what was happening.
I didn't have to do any of it, I must be honest, Oliver did the phoning of our mums to tell them and you know, the sort of telling everyone at school and things like that. It was funny, because it's a bit of an odd scenario where you were saying, it's lovely news, we've had a baby, it's a boy. And it's difficult to explain, but you, you felt compelled to then say, but, and it has Down Syndrome. Now, I don't really know why. But it felt like we almost couldn't say, Oh, yes, we've had a baby. It's a boy. We felt it just sort of then saying, Oh, but he's got Down syndrome. And it was really strange thinking back now. But it did seem I suppose it was a bit strange that we felt that we had to sort of justify it or or get it out there almost before they saw him, I suppose. Because it's obvious if you see somebody with Down syndrome, you know that they have it. It's also so physical, for many, there are obvious physical features. But it was who Oliver took the brunt of, definitely on all of that side of things.
Melissa Gough 18:19
I'm hearing layers to this situation that you're all doing your best to move through. It is almost like you're preparing people for what is going to be clearly obvious when meeting Finn. So you're trying to make that moment as stress free, comfortable, and reassuring and acceptable as possible.
Claire McGrath 18:34
Yes. Absolutely right. It's interesting, because, as I said, already, when he was born, we were so ignorant we're completely not educated about it at all. We suddenly found ourselves thrown into this brand new world. And we wanted to do everything that we could to educate ourselves to learn about Finn to learn about the condition of what we needed to do. There's so many things that we found out and we educated ourselves on. I did want to say that when we were still in hospital, one of the things that made a significant difference and I might say the significant difference for us was that we were handed a pack, it was called a welcome pack.
It was something that had been prepared by our local support group, and we were given this support pack. I have to say, it took me a couple of days to sort of open it and look at it. In fact, my sister came in and said, ‘right, I'll have a look at it, see what it says and then I'll see if I think it's going to be helpful.’ That for me was the big, big game changer, if I can quote the title of this podcast! Because we then realised that it was down the road from us, literally five minutes away. There was a whole community of people that we could reach out to, and that for me was the big, big thing that changed everything in our world, and we knew that we were going to be okay.
We reached out straight away to the lady that runs it. Her name's Lou, she's amazing! She emailed me straight back, I remember sitting on my phone thinking, has she emailed back yet? When Finn was 10 days old, we went to the first meeting, the support group meeting, and loads of the parents came out, there were loads of them there to welcome us. And we're still part of that now. It's the most amazing support group and to have that local support is so significant for us. I just wanted to mention that because having that to know that you're not on your own has been really important for us.
Melissa Gough 20:51
Thank you for sharing that. And it's so wonderful that you have this amazing support group. It's funny, Claire, no matter who I speak to, whether it's yourself a mum with a child who has Down syndrome child, someone who's had a stroke, someone who's dealing with whatever adversity it is, that comfort of knowing that there is a support group is the same thing that I hear in all the interviews It's so important that people do not underestimate the value of feeling connected to a community that will hear you, that will see you that will understand you, you can't pay enough money for that!
Claire McGrath 21:22
The way I would describe it as being amongst people who get it! I have the most wonderful friends and family, I'm very, very lucky that I have really close supportive friends and family. And they do, they've educated themselves, they've taken steps to look into what it means and what they can do. But to be able to actually be amongst people who you don't have to say anything, because they just get it and those little teeny tiny things that you might need a little bit of a boost up sometimes, you can always either give that or you can receive it if you need it. So it's quite a nice reciprocal arrangement where you can all help each other.
Melissa Gough 22:11
What's it like when we start getting to the point now, where Sebastian's already at school? What's the journey like for Finn leading into the education system?
Claire McGrath 22:20
Again, it's a decision we had to make as to which route we wanted to go down whether we felt that we wanted to transcend into a mainstream Primary School. And that's what we decided to do, we wanted him to have that opportunity. There is certainly a lot of research to show that, for children who are able to manage in that environment, that's a really good place for them to be amongst their peers to, you know, learn from and be amongst. So that was a decision that we made.
We're very lucky because Sebastian school is a really lovely school. They are very well set up for looking after and assisting and teaching children with special educational needs. We did have to go through the hoops with the local council trying to get the provision in place that he needed to get his one to one support at school because Finn's doing really well, but he needs that support in order to make sure that he can reach his potential. And for us, I think that's the key thing. I've always said to them, to the staff at the school, and to anyone that will listen to me, actually, he can do things and he just needs not to be underestimated.
I think one of the things about having his condition is that it is obvious straightaway, that it's quite easy for him to be underestimated. Because people will just see him and think, Oh, he's got Down syndrome, he won't be able to do that. And that was my real big thing that I didn't want that to happen. I have to say that after a bit of a fight, I mean, we did have to have a bit of a fight about it. But nowhere near as bad as some other families have had it. I would say that the process for trying to get an education health care plan, the process for having to get that in place. It's quite, it's quite a painful one. And as I've already said, I have a background in law. That's the practice of law every day. I'm used to dealing with documents, detailed documents, and sometimes ones that don't make much sense. But this process was something else altogether. I mean, I found it really difficult to navigate.
While I recognise that part of the reason I've found that difficult to navigate was because it was about my own child. It was just the process, a really difficult one and how difficult I found it. How on earth people are supposed to navigate that to make sure that they're getting the best provision for their children. That really opened my eyes to that but for me personally, I wanted him to have the full package of support. They eventually did come back and say, Yes, he could have that. So that meant for us that when we went into the school environment, the school had what they needed to be able to provide him with a one to one teaching assistant who was with him throughout the day. We've just again fallen on our feet because his teaching assistant is amazing. She is absolutely amazing! I felt so lucky! This is the bit where I sort of get a bit emotional about it or because it's what's happening right now. And he's, you know, I know that his actual teacher is brilliant. She couldn't be more supportive and adept, looking to make sure that Finn's part of the class and all of those things that I was worried about
We're just so lucky that the people involved in his care at school are just all absolutely wonderful. The lady that runs the special needs educational work within the school, she's called the SENCO. She again, she's amazing! The head teachers on board, you know, and in fact, funnily enough, we've literally just had, I don't know if they have the same over there, we had our Ofsted inspection. So they came into the school, and they literally had it a few weeks ago. I must tell you, because I thought it was so nice that we were sent the report yesterday. This is what it said: ‘differences are actively celebrated. Leaders collaborate with parents to help the whole community understand disability, pupils have deep respect for their peers and this is a truly inclusive school. And that's coming from Ofsted! The fact that we've got Finn is in that school, in that environment where he's just one of them. He's just another child in the class and that is crucial to us.
I was so worried I think, when we spoke before, I remember, we found out which class he was going to be in and the WhatsApp group got set up and all the parents started sending photos of their families and things and I thought, oh, here we go. In the end, I thought about how to deal with it. So I just decided to bite the bullet and I sent a photo. And I said, this is us and you probably noticed Finn has got Down syndrome. I am really happy to talk about it. As you might have gathered, I'd quite like chatting! I'm quite happy to talk, please, no the question is taboo.
I'm not going to get upset by a question. Another thing that people worry about is how they say things and the wording that they use and whether that's going to be offensive. I think sometimes people within the community do find the way in which people speak about it quite difficult to deal with. But for me, I'd much rather somebody feel that they can come and ask me a question or talk to me about it without having to worry about how they're saying it. I'd much rather that dialogue be opened up rather than thinking ‘Oh, I better not say that, because I might say the wrong thing. All my worries about him not being invited to the parties, for example, absolute nonsense! Where he's been at all the parties, you know, the classes are amazing. The kids are so nice and there is a lovely little girl in his class and sent home little pictures that she's drawn for him over the last few days. Yeah, they noticed that there are a few differences. But on the whole, they just get on with it. Like he's just one of the crew. That's all I really want for him.
Melissa Gough 28:33
There's so many things I could say. I wanted to cry when you just read out the Ofsted. I worked in the education system for a little while as well. In the UK, I'm very aware of the Ofsted process. It's a rigorous task and to be given such an outstanding response for that school is phenomenal. One thing that you shared with me already off air, is that there are about six or seven other children with Down syndrome in this mainstream school. I mean, that blew my mind when you told me because I had a conversation with an amazing teacher only in the last couple of days. He is a teacher at a specialist school which caters to students with intellectual, physical, or for multiple disabilities. I reached out to him just to try and get an idea and the school he is at has a great reputation for all the amazing work that it does. But one thing I did ask him was how many children with Down syndrome do you have at your specialist school? And I'm not trying to use the word specialist in any demeaning way or anything. It just caters to specific children. He said we have about 8 to 10.
Claire McGrath 29.05
Really?
Melissa Gough
Yeah, so they have the same amount of children that you do in a mainstream school. He said he's like that's quite unique. It's very rare for a mainstream school. But he was also happy to hear that you are a mainstream school supporting children to navigate through the normalities of everyday life at school.
Claire McGrath 29:55
Absolutely. The school is very well set up.They make sure that the training is there and that the class teachers, as well as, the one to one teaching assistants are trained and they know what they're doing and so that they can get the best out of the children. Of course, in the same way as any other school, there are also a number of children with other needs. I think that's an interesting one, because we had a coffee morning recently that the school set up for parents to come along to. It was for parents, with kids with additional needs, and anyone else who wanted to come, but generally speaking, it tends to be the same ones.
I was saying to my crew of mums that have the children with Down syndrome, we need to be really careful, because I just want to make sure that everybody's included. It's a funny situation, because we're always chatting about inclusivity. We want to be and then we have to make sure that we don't become this sort of little group that is just so many of us. All of the parents of any of the children with any additional needs, should be properly supported. And it's quite nice to meet other other mums and dads that have got kids in the school that have got other needs to make sure that they're all being met.
Melissa Gough 31:18
What I love is the fact that you also raise the awareness for inclusivity, you decide to then pave the way and create even more understanding and more education. You team up with another mum, who has a child with Down syndrome, and on March 21, which is also the International Day of Down syndrome, recognising Down Syndrome and celebrating Down syndrome, you and this mum decided to speak to the whole school about what Down syndrome is all about.
Claire McGrath 31:48
We had myself and another lady who's also got a child with Down syndrome in reception. Between us, we spoke to the whole of the school that day, and it was amazing! The kids were so receptive, and actually quite a few parents contacted me afterwards and said, ‘Oh, my child said that you spoke and shared about the children’s comments. They remembered things, we taught them their names in Makaton, activities that were sort of a bit personal to them that they might remember. But the key message was, which is what I'm always banging on about - It's okay to be different, you know, differences should be celebrated, and just to recognise that and to just try and reinforce and emphasise that.
Melissa Gough 32:37
How many children did you speak to that day?
Claire McGrath 32:40
Oh, there's a lot of children in the school. So there are three forms within each entry school. So there's around 90 children in each year level.
Melissa Gough 32:47
That's between 600 and 700 children that you spoke to that day. Then they are then spreading the awareness or paying it forward by going home, ‘guess what, Mum, guess what, Dad?’ We had these people come today, and they spoke about Down syndrome. That is how it all starts?
Claire McGrath 33:05
Well this is the thing, that it doesn't it becomes what it's not. It's just ‘oh yeah, I went to school with somebody with Down syndrome, or there was this kid in my class who dances or whatever it might be, it's not this big, scary, unseen thing that you have to be worried about. That you do not have to be concerned or anxious about. That's, that's what it's about really, That's what we're trying to achieve. The older ones, we gave them a bit of a science, because they were able to understand that. We were able to give them a bit of the science about the chromosomes and all of that sort of thing. But for the younger ones, it's very much just a basic everyone's different and that's good. It's good to be different. That's sort of how we pitched it really
Melissa Gough 33:50
It's great that you mentioned everyone's different and just embracing everyone because unfortunately Down Syndrome still has stigma. It still has a draconian type of language attached to it. In the UK, over the last 12 to 18 months down syndrome has been highlighted and made front page news, I'll add some examples. So a beautiful, amazing woman and kudos to her, I can't even begin to be in her shoes. Heidi Krauter, a woman in her 20s with Down syndrome took the Secretary of State for Health and Social Care to court. She challenged the legislation, which is about allowing foetuses with the condition to be aborted up until birth. And as you and I've also spoken, we're not here to preach or give any advice about what you should or shouldn't do. This is about people having a choice, however, it needs to be a properly informed choice. Unfortunately, there's still so much information out there that is so outdated. We're just here to just try and shine a light on what is available today, this information,
Claire McGrath 35:02
I think that's really important, I think it's really important to make it clear that this conversation is not about trying to influence people's decisions about what is right for them. And I think that it's really important to make it clear that myself, as a woman, as a mum, I'm very much pro choice, I think everybody should have a choice, and they should make the choice that is right for them, without any exceptions. However, what you've just said it's my issue. I feel that anybody who's faced with the dilemma, and I know how they will feel because I know how I felt when it happened to me in terms of finding out and it must be even more challenging when you haven't even got your baby in front of you. But it's just about education and about people being able to inform themselves in a way, in a realistic way. I'm not saying in a way that is all bells and whistles, making it sound like it's a really rosy life, but just a realistic, informed position so that somebody can then make whatever choice is right for them. But with that proper information, I think that's my real thing, for me.
Melissa Gough 36:11
This does generate a lot of debate, absolutely. Many different schools of thought about this. But the thing I admire the most about Heidi is that this wasn't just a minor case, this case went to the High Court is that right?
Claire McGrath 36.26
Yeah, that's true. Yeah.
Melissa Gough 36.30
She took the Secretary of State, I mean, she's not also not dealing with a light little matter, either. She's taking the government to court and just saying, you have this act. This is what the AcT highlights, we are aware, it does create a lot of different views and a lot of different challenges. A lot of cultures that challenge a lot of previous medical research. I guess what I'm trying to say, however, is you're also putting a negative stigma on a disability when we are trying to positively represent it.
Unknown Speaker 37:04
The Act itself that she was challenging is old. What it basically says is that if a child is diagnosed pre birth with a particular condition, Down Syndrome being one of them, then that foetus can be disposed of up until birth. So that's the thing that is trying to balance the way in which, in 2022, we are trying to celebrate difference, we're trying to say that everybody should be able to be themselves. Then you're trying to match that against this legislation, which says that purely because you have Down syndrome, it's not as simple as that, there are other conditions and that's not what I'm trying to talk about, but specifically in relation to Down syndrome.
That just because you have that diagnosis pre birth of that condition, I think it's something like up until you enter the birth canal, that baby can be aborted just because of that. It's just trying to match those two positions. That's quite difficult. I think for people who have Down syndrome, or parents of children with Down syndrome, it's really difficult because personally, I can only speak for myself in years to come. Finn may say to me one day, well, why is that? Why is it that, because of who I am, just because of me having this extra chromosome? Why would that have been okay? Why am I not smart? Am I not worthy enough? Is my life not good enough? Am I second rate in some way? I would have been okay, legally, for a doctor to have terminated my life, just because I've got this extra parameter just because of who I am, just because of me being me. And I think that for me, that's the thing that really gets me that significant issue. I think I'm one that comes down to education. And it's really tricky, because I'm not suggesting for a second that people shouldn't have a choice, even at that late stage, it is still somebody's choice. It would never be an easy decision to make, I'm sure. But I do think that it is something that Heidi's right to be pushing for, because it's something that does need to be reconsidered, given the age of the Act, and the way in which society tries to be inclusive now.
Melissa Gough 39:24
Well, the act was actually formed in 1967. So we're getting back to 55 years ago, and even in the medical world, and even in Down Syndrome from 55 years ago, until now, there are so many resources available. Down syndrome can come with lots of different physical adversities that require surgery. However, they're quite mainstream now in how they can do that. They're very straightforward procedures that can still get very successful results.
Claire McGrath 39:55
I think that's a really good point that you raised about the changes in things like medicine. Because years ago, a lot of children died early because they had heart conditions, and now there are monitored, mainstream surgeries for it. They repair them so that it's fine. Once it's repaired, there's not a problem. Years ago they didn't think children with Down syndrome could read. And it's nothing to do with the fact that they couldn't read it because they couldn't see. So when you've got people actually looking at their eyes and working about the difficulties that might have with their eyes, all caused by this extra chromosome, people with Down syndrome, of course, they can read.
There's been much more research done about the most appropriate learning styles and how, if you teach in this way or another way, you can get some really amazing results. Things have changed so much in terms of not just as I was saying earlier with attitudes, but as you pointed out, rightly, that, in terms of the way in which we can make sure that people who have Down syndrome can reach their full potential, rather than, as it was, with no expectations of them at all. Unfortunately, obviously, there were a lot of times where people would be placed into institutions rather than taking home with their families. It's going to stunt people reaching their potential because they're not in the environment that now people are with their families. Where they're just treated as one of the children in the family with the love and support that everybody else would have.
Melissa Gough 41:38
We've got all these amazing facilities and resources and access in the year of 2022. I'm going to highlight another story that also made global news back in February 2020. The North Macedonian President, I'm going to do my best to say his name, Stevo Pendarovski walks a little girl who has Down syndrome into school, after learning that she's been bullied. That made headlines everywhere. He's been praised for shining a light on children with disabilities and the fact that they need to be inclusive in our everyday community, including our school community. He said, I'm just going to quote something that he said,’ prejudice should not be an obstacle to building an equal and just society for all. Empathy is our moral obligation. The behaviour of those who endanger children's rights is unacceptable, especially when it comes to children with atypical or not neurotypical development.’ Now, the thing in learning about this case, and this really got under my skin, is it wasn't the children who were making it difficult for the little girl. It was the children's parents who were boycotting them being in the same classroom as her. Honestly, that stayed with me for days, because how can this next generation try and go forward, when we're promoting so much inclusivity, and so much acceptance of all, for all. When they're going home at night, and talking to parents who are still holding on to just unrealistic views about what a child with Down syndrome is. What I loved is that the school stood their ground and supported the family. And I guess also, if you've got the president knocking at the door of the school, everyone's got to listen.
Claire McGrath 43:31
Yeah, that's the thing, because you can't, you just have to hope that people are going to embrace it. And not think and that was part of, as I said earlier, the concerns I had with parents seeing Finn and thinking, oh, no, I don't want that child in my child's class! The preconceptions whether he'd be disruptive, or any of the things they might think that he would be, without even giving him the chance to get to know him or even to observe him. I suspect that probably, in that case, that it's all about preconceptions and lack of education and lack of knowledge and ignorance, which is exactly where I was, you know, before I had Finn, and so it's not a criticism of people. Because if it's not something that is in your world, that you're aware of, that you're not going to have knowledge of it.
That's part of what I'm trying to do through talking to you and through my very limited Facebook experience with posts and things that are sometimes really important about events etc. To try to spread the word and I've got a close friend of mine who you know, she's very keen on trying to raise awareness and raise money as well, for a charity that's very close to us. It's been giving Finn therapy and support and supports families. So it's the little bits like that. Even if somebody on my Facebook that I haven't seen since I was at school, happened to speak to somebody one day and they said, Oh, hang on a minute, there's somebody on my Facebook that I went to school with who's got a child, it's just about having it out there. As and when people might need it, they know that there are places they can go for support.
Melissa Gough 45:12
I know you and I know you are someone that even if you didn't have a child with Down syndrome, if it was your sister or someone who was a good friend, you were someone who would embrace learning as much as you could to provide support and awareness and acceptance. People have a choice. People have a choice about whether they want to learn no matter what age they are, they want to accept an embrace. I think the thing that is frustrating and I'll use the example of those parents in North Macedonia is they did not want to even try. They just saw it as a massive stigma, and then decided to act that way. So it's amazing that there are people who still express the human side of themselves and think, Okay, I'm ignorant. I don't know anything about it. I didn't know that much about Down syndrome myself. But since meeting you, I am learning more, just in two or three conversations. So another example is Victoria's Secrets, the massive model organisation extravaganza. This year, February 2022, they employ their first model with Down syndrome. Her name is Sophia Jirau, I hope I've got that right. Sorry, Sophia, if I've said it wrong! She is the first to be employed by Victoria's Secret because in recent years, they've been under scrutiny for their lack of diversity and a more realistic representation. She's only young, she's 25 years old. I follow her on Instagram, just to see what she does, just to see what she represents. She is a walking ball of positivity. She's always promoting herself and accepting yourself, no matter who you are, no matter what you present with. And she also has over 600,000 followers. She's also a marketing machine advertising and promoting everything from health products to beauty products. It's all about being good to your body and good to yourself, and it's just amazing.
Claire McGrath 47:18
Yeah, well, I think certainly over the last, I don't know, 12, even longer 24 months, the visibility of people with Down syndrome, in advertising, on TV, and the media, things like that have certainly changed. Before you would never see, as you say, a model with Down syndrome, advertising anything. But now you'll see quite more representation. I think Marks and Spencers, or certainly River Island, those sorts of stores have had billboards in their shops advertising their products using models with Down syndrome children and adults. And there's also a brilliant actress called Sarah Gordy, who has been in a lot of different roles and she has also done stage shows. She also has Down syndrome. There is also a producer on Call The Midwife and I think she has a brother with Down syndrome. I believe there's a family connection in any event, and they've been quite instrumental in being behind the bill that has been passed. There's been quite a lot of celebrity support, if you like for that. These actors and actresses have been involved in supporting and giving their weight to it. So it's all happening, it's certainly all happening, that's for sure.
Melissa Gough 48:45
So I'm just going to mention as you've just stated the bill. So even though Heidi presented this case, unfortunately, she didn't win the case. However, what it has created is a snowball effect. And there's now been the implementation of a new Down Syndrome bill. What can you tell us about that?
Claire McGrath 49:06
That's something that actually has been going through and one of the members of parliament, who is Dr. Liam Fox MP, decided to present it as a private member's bill, which is a particular way of trying to get something through. We were lucky enough there was a brilliant group of people that were set up called the National Down Syndrome policy group. I hope I've got that correct. They were instrumental in pushing this through. There's amazing people in that group, including our lovely Lou that runs our local support group. So we've got a local connection to that and what's happening. But amazingly, it got through the first reading without any objections from anyone in the Commons, which was pretty amazing. Then there was a bit of a debate about it, in the Lord's, but it still went through. And I'm pleased to say that it finally received Royal Assent I think on the 28th of April. Amazing!
So now we're now going to have a Down Syndrome Act and what's happening now is that there's consultations about what that is going to look like and what it's going to contain. The idea behind it is; to make sure that services will be legally in place for the people and that services have to be provided for people in line with their needs. So across the board, in terms of education, health care, all sorts of areas, but the minutiae of what exactly it's going to mean is being thrashed out as we speak. Certainly for me, as a parent of a young child with Down syndrome, Finn, still only five; the fact that there's going to be some protections in place for him to make sure that there's some sort of recourse if people aren't giving him that support, especially as he gets older. We might not be around forever and that is a huge concern for people, for parents. I think about who has children with Down syndrome or any other significant disability, once we're not around anymore, what's going to happen to our child, and who is going to care for them.
I don't, I don't want that to fall just on Sebastian's shoulders, because I don't think that's appropriate for a sibling. I think I want them to be brothers, I don't want Sebastian ever having to feel that he's required to look after Finn. We're going to be doing what we can to make Finn as independent as possible in terms of being able to live in his own right as best he can. But we have to recognise that he is going to need support. Hopefully, this act will now make sure that things are in place, that all the potential opportunities available for these children are within reach, and can be continued with the support. I think that's really important.
Melissa Gough 52:02
What you've just raised is so important, because as you said, this bill has come in right now. And people have been lobbying and advocating for many years to see progress. You've spoken about your concerns and the trials and tribulations that have come along the way with having Finn. But would you say your mindset is more optimistic now about his future?
Claire McGrath 52:26
Yes, I think so. I would say that's fair. I mean, I feel like we live in a society now I hope where things are improving for people who may have differences. They may have things that historically years ago would have been such a big problem, big stigma, big taboo, who would have just been a squirrelled away from mainstream society. I think that things have changed. I think that the more visible and the more integrated Finn and other people with conditions such as Down syndrome can be, the better that is for everybody. It's hard, because I think sometimes when I talk to people, they still, without meaning it in a not in a derogatory way, still feel like it's such a big thing, and he's just going to be sort of unable to do anything.
Then when they meet him, and they realise, actually, that isn't the reality. I honestly do think if we give him the right support, now, he will be able to contribute positively to society, he will be able to have a job. I'm not suggesting that he's going to be, you know, a nuclear scientist, but he will be able to be something positive and give something back. I think that's really important that people realise that is what the future is. Now, there are people working for opportunities for people with Down syndrome alongside other things, I'm sure, but I'm just obviously inverted in this particular world, about finding paid employment, because there are so many people with Down Syndrome who are working, but it's all voluntary, they don't get paid. So the percentage of people who are actually getting paid work is very small indeed. So I'm hoping the way in which they learn the best can be implemented that will have a knock on impact into the jobs that people can do and the contribution and the visibility, as we've discussed. I'm feeling positive.
Melissa Gough 54:24
Credit to you. I'm a primary school teacher and I know, one audience that is a tough audience is a classroom full of kids. So credit to you and your team who spoke to that amazing school that day. What is on the horizon? What are you hoping to do more of to help create awareness?
Claire McGrath 54:43
One of the things that the local support group is doing and we will obviously be part of that is to try and keep the visibility active, along with continued awareness and things. So they're doing fundraising to make sure that people can keep the packs there. Continually stocked up within the hospitals. Again, that is really important in terms for people who are having that experience of finding out their child has been born with Down syndrome. So dealing with the people that need that support initially, but also in terms of the wider community. Making sure we're out there, having stands at the hospitals, going to speak to midwives, going to speak to doctors, going to speak to those people who are delivering these messages to the next generation of midwives. Altering the dialogue, so words such as, ‘we are so sorry, but your child has Down Syndrome. Or, I'm really sorry that the test has come back and the chances of you having a child with Down syndrome is significantly high, when would you like to book the termination. Just trying to make sure that the whole language has changed. It's just about educating the conversations you have with people. It's amazing really to hear that people are genuine and want to know they want to talk to you. And that's really that's really positive.
Melissa Gough 56:16
The reason why I wanted to do this podcast is because we're now also in a society and in a world of technology, where so many conversations are happening. And so many stories are shared, people resonate with stories as humans, we resonate with that connectedness with another human or another community. That is how we are able to then internalise and go, okay, I get that, I can see that, I hear that. So I'm going to just ask a couple of questions more about you as a family. How would you describe Sebastian as a big brother to Finn?
Claire McGrath 56:49
That's an interesting one, bringing it back round to this, because it's very easy to paint it out as a rosy picture and say, oh, all these wonderful things, because, actually, of course, it's not always like that. But I think that, that's the situation that every family experiences in some way, everyone has their challenges. Finn can have his challenges, but generally speaking, you just get on with it, because it's your family. So you don't think oh, why? How different is my life to anybody else's you just get on with it. Sebastian I must say, he is an amazing little boy. Regardless, he's just a really lovely boy. He's lovely to have a conversation with. He's not great outside of the family environment in terms of being around lots of people. He's an amazing brother and they have a really lovely relationship. Sometimes he is the translator, for example, you know, Finn's trying to say something and Sebastian will support the flow if required. It worries me sometimes that in the future, when that time comes, where somebody does say something to Sebastian about his brother, how he'll be affected by that, because it will happen, I'm sure, because that's just life. But he doesn't see him as any different. He just, he's just his brother. That's all they know.
Melissa Gough 58:18
And what connections does he make about Finn and Down syndrome? What sort of language is he using because he's seven now?
Claire McGrath 58:24
We've done it in layers. So when he was young, you know, Finn might take a bit longer to talk, you might take a little bit longer to walk, he might need a bit more time, but he's got there. As he's gotten older, he's now able to explain because he quite likes the science element of it. That's the way his brain works. So he wants to understand what it means. What the chromosomes look like. And as anyone who knows me, I do love a picture of these chromosomes looking like socks! I'm sharing that every five seconds, because I love that pitch, because it just shows all the chromosomes and then a little extra one. I think for children, that's a real visual representation that you can see exactly what it means and exactly what's gone on. So he understands now what it means.
When we went in to talk to the class or the school in the upper school assembly, where we were talking to the older students. So he's in that cohort, and he stood up and read a poem about his brother in that assembly. I was so proud of him, because he's very, he's quite shy, as I said, and he actually got up in front of all those kids and read his poem! His class seemed to be really proud of him. At the end of the day, kids who he didn't even know were saying, Oh, well done! It was really nice that the support for the poem was about my brother who has Down Syndrome yet the support was still there, and within the school and, and that was really nice. We tried to sort of keep him as engaged as we can with it all and we're trying really hard to sort of have times where we will take him out. Just him. The thing is, Sebastian can be quiet, Finn can take over sometimes, because for example, he loves running, it's a sensory thing. So when we go to school, he runs to school. So we all run to school and have a choice as to whether he wants to run or not. We all ran to school. So it's little things like that. But again, it's just our life, you know, we just get on with it. But we're very lucky that Sebastian is Sebastian, because he's just the best. And we're very, very lucky that he's so lovely. And such a good boy.
Melissa Gough 1:00:34
I'm not surprised. I have no doubt he's an absolute credit to you, and he's also got a lot of his mum's amazing nature and personality and demeanour. I have no doubt. How have things been for you and Oliver as a married couple, and then you already go through this with Sebastian, you go through your own journey with that. Then Finn comes along presenting with Down syndrome? How have things been for you, and Oliver, I'm sure you've come together and also dealt with it internally and externally away from each other as well, through all this?
Claire McGrath 1:01:07
There have been challenges. I mean, we are lucky enough that we haven't had some of the massive things that some families that we know of children with Down Syndrome have had. For example, where they have children who need open heart surgery and things, resulting in lengthy hospital stays to contend with, and obviously one parent having to stay at the hospital and things like that. We haven't, we've been really lucky that we haven't had any of those things to worry about. However, yes, we dealt with it in a different way to start with. I think I try and generally, in my life to be quite a positive person, I think it takes quite a lot to knock me down and I think we're quite a good match. If one of us is, I should say having a down day, the other one sort of is on a good day. So we can bring each other up or sort of step in or so we work quite well together in that respect. I think the biggest challenge we have with Finn is he doesn't sleep very well. So that can be challenging. Our lives now at the moment, particularly when Finn will go down to bed, who will sleep in his own bed, he's got a nice bed and lovely fancy bed that we bought him, you know that he wouldn't hurt himself and all these things. Then he'll wake up, and he's just up and up and down all night and stop Sebastian waking up. Because we've both got work, he inevitably ends up in our bed, and one of us goes and sleeps in his bed.
Things like that aren't great for a relationship, because, you know, obviously it limited time together on our own, or even with Sebastian on, you know, on our own sort of thing. So it's things like that. But having said that now, I'm sure there are plenty of families up and down, you know, across the world with kids who are five who don't sleep, whether or not you've got no Down syndrome at all. I try not to think, Oh, poor me, poor me, because actually, I don't really feel that way. I would love a full night's sleep. In fact, you can have my arm if I can have a full night's sleep. However, I just tried to kind of keep on the positive side of everything. Otherwise I think you would just, it would get you down. So I just tried to kind of keep up. And as I said, we've got so much support around us and everything. So I'm sure we'll find time for a date night.
Melissa Gough 1:03:29
Well, if I was living over there, I'd give you one. Obviously, you've gone through the normalities of married life. You have to lean on each other through certain times and certain difficulties. But what is coming through is that you're very much a team. It's a real family unit. We're all in this together. We all work through it together. We will walk forward together and deal with it together. That's what I'm hearing about your family.
Unknown Speaker 1:03:55
Yeah, I should tell you we're not actually married,Mel! I must say I don't know how outrageous, but I'm still waiting for the diamond. I'll let you know if this if this interview shames him into asking me! (laughter).
Melissa Gough 1:04:12
I’ll make sure it stays in post editing!
Claire McGrath 1:04:16
Funnily enough, we’ve been together for 20 years this week, been together a long time since in our early 20s. Yes, we have our times, our ups and downs and our times but generally we just get on and we do work well together. We sort of bounced off each other well, and I think it helps to have that as a kind of foundation. I'm not saying that we don't want to sort of kill each other from time to time because of course we do that with anyone! But I think you know, with the children particularly we know what we want to achieve. We want to make sure that we're doing what we can to pull together to give them the best we can so I think that's really that that's our focus.
Melissa Gough 1:04:56
This is the final question I asked everyone. The name of this podcast is called The Brain Game Changer: where heartfelt stories, awareness and education can change the game. If there's one piece of information, one golden nugget, what would you want people to become aware of,
Claire McGrath 1:05:14
Don't be hard on yourself. If you find out either post or prenatally, that your child has Down syndrome, you're going to feel like the world has ended. And you shouldn't feel bad about that, you have to embrace the fact that you feel that way. Because that is natural. Most people have felt that way. But it isn't the end of the world. Please go and reach out. Use as much information as you can to make the informed decision that's right for you. And if you do decide that you want to continue, please reach out for the support. Because there is an amazing community of people out there.
The people I've met since having Finn are just some of the most wonderful people that I will meet. I'm so glad that our paths have crossed, and just be positive. Try and keep positive because it may feel like the end of the world, but it genuinely isn't. And there's so much happening now, in 2022, that means that things are looking up. That for me is the absolute key thing that whether you're 12 weeks pregnant, 20 weeks pregnant, 35 weeks pregnant, or you've just had your baby, if you found out six weeks after you've had your baby, which I've heard about. Knowing that there is somebody without judgement you can talk to is the biggest, biggest thing.I mean, I've exchanged and shared those feelings of utter despair and horror. And when you find out and that's the thing, because you feel that way. You don't want to say that out loud, because it sounds awful. But actually, that is how you feel. And when you reach out, you'll realise that so many other people do feel that. People get that, and you can quickly move on from those feelings to discuss what's important to you to help you with your decision making.
Melissa Gough 1:07:14
I think you worded it all really well. I just want to say a huge thank you for your time today, first and foremost as a mother. And also as someone who is navigating through the system, even though like you say you've got law expertise. It's a hard system to navigate through when you need funding and you need support. And you're also shining a light on what it's like out there in the community and what is also out there for everyone else. And this has been amazing. So thank you so much.
Unknown Speaker 1:07:44
I really appreciate you having me on your amazing podcast and thank you so much.
Melissa Gough 1:07:54
I want to thank you for listening to this episode today and supporting The Brain Game Changer and the guests we interview. I hope it adds some reassurance or valuable tools no matter how big or small, that will continue assisting you in being the wonderful game changer that you are. The best way to support The Brain Game Changer podcast is to like, share with family and friends or subscribe. So each weekly episode is easily available to you. I'd love to hear your feedback. You can also find me on Instagram @thebraingamechanger Drop in say hello and check out the regular posts about awareness and education on various important topics and issues. Until next time; looking forward to sharing the face with you again soon. Take care.
