Transcript - Episode five
Autism and ADHD a Mother and Daughter’s Journey
Please excuse any errors as this transcript has been automatically generated
Dr. Olivia Kessel:
Welcome to the Send Parenting Podcast, focused on supporting and empowering parents and their Neurodiverse children. I'm your Neurodiverse host, Dr. Olivia Kessel. We'll be speaking weekly with experts in the SEND World. No topic is too big or too small for us to discuss. We will include things like, how do you navigate education? How can you understand what your child's legal rights are to an education? Practical advice on neurodiversity, and most importantly, hearing the voices of other parents just like you. Looking forward to having you join US Weekly as part of the SEND Parenting Tribe.
Dr. Olivia Kessel:
In this episode, we will be joined by Catherine working mom of three, who has kindly agreed to share with us her daughter's journey to eventual diagnosis of autism and ADHD. She will take us through how she felt when she first got confirmation of Coco's diagnosis, her experience of wondering why me did I cause this? What does this mean for Coco's future? Will she be independent? She'll describe her personal self educational course in neurodiversity, which broke down for her, the stereotypes of the labels of autism and ADHD and led to not only her acceptance of her daughter's neurodiversity, but really viewing it as a gift for the whole family to learn and embrace. Her journey really, really resonated with me, and I believe it will resonate with a lot of parents. Please keep listening to hear Catherine and Coco's story. So thank you Catherine, for joining us.
Dr. Olivia Kessel:
I'm really excited to hear your story with your daughter, Coco, and your journey with autism. I think it's really important because so many times kids who are diagnosed with autism are boys and girls tend to be left out of the picture. They tend to not maybe be stereotypical, and they also tend to mask their symptoms, so to speak. So it's can be confusing for parents if they have a child that they suspect or maybe don't even suspect. So I think your story will be really helpful to understand more autism and girls, So thank you.
Catherine:
It's a pleasure to be here.
Dr. Olivia Kessel:
Excellent. Well, do you want to kick us by telling us about your journey? What has been your journey with Coco? Yeah,
Catherine:
So, well, that's quite a big question. Coco is my eldest, eldest of three. And I think one of the challenges when they are your eldest, is that you are not used to parenting, so you have no idea what to expect. No reference point. Yeah, exactly. I did think there were a few things going on. I mean, at playgroup she was called chaotic Cocoa. They used to call her and various other things where she would be quite challenging at home. But I just thought, well, I've completely underestimated what it's like to be a parent. Clearly, you know, people told me it's hard. Clearly it is really hard. Then she started school and that's when quite a lot of the alarm bells started ringing. School would call me up quite a lot. They would keep me behind. And they never suggested or identified any particular diagnosis or needs. They just said she was struggling, you know? It was then that we had her assessed by an occupational therapist, and it was that point they diagnosed her with dyspraxia. So obviously that was the first thing. I've never heard of Dyspraxia <laugh>. I was like, what on earth that?
Dr. Olivia Kessel:
What made you go to an occupational therapist? Was it the school which recommended it? Yeah. Okay.
Catherine:
The school recommended it. It was only maybe about a year later when I was having a discussion with another parent who also has a child with dyspraxia and said, oh yes, of course, they've also got a ADHD. And literally the penny dropped, like, oh my gosh, she's got that as well. So I started researching ADHD, and it was almost like, you know, every single box was tick, tick, tick, tick, tick, tick. I then went to the GP and said I really would like to get a diagnosis. And that's when you go on the eternal CAMS waiting list to try and get somebody to see them. I was on that list in total for three and a half years. We never made it to the top of the list in three and a half years.
Dr. Olivia Kessel:
Yeah, I, I mean, I thought that the waiting list was three years, but I had no idea that could go longer than that. And that you never even got to see them.
Catherine:
We never got to see them. It was COVID, I think made it worse. Okay. Yeah. So anyway, during that time, the school that Cocoa was at asked us to leave, essentially. Really? They, yeah, so they basically said that they couldn't meet her needs anymore, and this we're talking about a private school with a class of 10 children. So it's pretty surprising that they said they couldn't meet need. She had regular, I was paying for additional support in class and out of classes, but they just made it very clear that she was going, they were going to struggle dealing with her going further up the school.
Dr. Olivia Kessel:
What year was that?
Catherine:
So she was in year four.
Dr. Olivia Kessel:
Year four. Was that before or after Covid, or was it during,
Catherine:
So this was during Covid, right in the middle of Covid. Yeah. And they suggested, so actually just, just on that Covid thing, COVID was actually a really good experience for me, trying to home school Coco because I was then able to see how differently she learned. I saw there was a lot of rote learning going on at her school, which I hadn't seen before. But obviously having to done homeschooling, we decided not to do any of that. And actually, I took all of her learning outside. I asked the teachers to share the curriculum with me on a Sunday, and then I would create an outdoor learning schedule. And we just basically did everything outside. And I, I realized for her that immersive learning experiences and practical application were where she was really thriving. And actually I saw during that period of lock-down, those three months, the weight coming off her shoulders and, and her coming back to life basically.
Catherine:
She really changed when she wasn't in that school environment. So actually when the school suggested I go and look at a specialist school, although it was a major shock, I was also thinking potentially this might be a good option for her. So we, we weren't able to go and actually look at the school because it was in the middle of Covid. So we called the school, we had a teams interview over the video call, and then they offered Coco a place. And it was absolutely heartbreaking decision because she was very happy at her school. She had lots of friends, she was very close with, she was also going to be the only girl in her year. So back to that point you made earlier about neurodiverse children, it's more often identified in boys than girls. That was another issue that she was going be the only girl in her year, but I tried not to bring gender into it. I was thinking well, she's got all of her friends from her other school. Let's make this about her. School survival essentially is how I looked at it.
Dr. Olivia Kessel:
And had you had the assessments done by then? Or were you still waiting?
Catherine:
No. So
Dr. Olivia Kessel:
Still, no. So you just had a diagnosis of dyspraxia.
Catherine:
That was the only thing, but I'd said to the school, I really do think she also has ADHD. And then, so I'm sorry, this is a very long answer to the question,
Dr. Olivia Kessel:
<laugh>. No, no, no. This is exactly the right answer
Catherine:
So the school actually took her with only the diagnosis of Dyspraxia, which is pretty amazing. Yeah. but with suspected other things going on. And so, she then started at the Unicorn School in Abingdon, which completely changed our lives. I mean, completely changed our lives. She is a changed person. We are all changed people because of that school. It's done absolute wonders for her. She was three years behind when she started at the Unicorn, and she's now caught up in every subject except maths.
Dr. Olivia Kessel:
Wow. That's incredible. That is truly, I mean, it just shows you how a rote repetition learning which was very much was Rupert House's style to an immersive learning . Has such a huge impact on neurodiverse children who aren't just neurotypical, parroting back. And I would even argue that maybe neurotypical children would benefit from immersive learning.
Catherine:
I totally agree. I I was having that exact same discussion earlier with another parent. I see my boys in their school environment. Luckily they are both in very good school. But I think for them too, more immersive learning experiences would be really beneficial. We've got to get ourselves out of this mindset that children learn in classrooms. They really should not be stuck in classrooms. Um, we can talk about that a little bit later. I'll finish the story about the diagnosis. So whilst once we moved to the unicorn, I told the school that actually I was going to come off the waiting list for CAMS, because we'd been on it for three and a half years. And I was going to go for a private diagnosis because I just needed some clarity for Coco and for the school and for me around what was going on. And it was at that point I said, I'm going to get her assessed for ADHD because I'm certain she has that. And they said to me, actually, we think you also should get her assessed for autism. And I was so shocked. I mean, literally, it hit me like a train.
Dr. Olivia Kessel:
I can imagine. Autism wasn't even in your mind
Catherine:
No, yeah. In my head, autism was Rain Man. Which, you know, thanks Hollywood <laugh> for that but that was my preconception of it. I had some very negative baggage around what the label, label I hate that word, but you know, that that diagnosis is and meant. So that was a real journey. I mean we had her assessed privately, she does have autism, she also has ADHD and a plethora of other things, including dyslexia, dyscalculia, sensory processing. I think it was the, the autism word was the most difficult one for me to come to terms with. At the time I had, I went through a long period of sort of, why me, you know, how is she going get on in life? She'll probably only ever live with us now. She's never gonna be independent. All this kind of stuff.
Dr. Olivia Kessel:
Almost like a grief, a grief process
Catherine:
Almost. I mean, some people do say that about when you get the diagnosis that it's a grieving process? I'm not quite sure. I felt quite like that about it. It was, there were a few days after she was diagnosed where I was sort of looking at her slightly differently. Like, wow, you know, does she, she has autism. Wow. And then I kept having to tell myself, it doesn't mean she's different in any way. She's still your little girl. She's still the same person. You know, it was very strange. I'm sure lots of other parents would empathize with that reaction. But then I sort of dove in the usual way that I do. I dove into all the books, listened to all the podcasts, talked to other parents, and I realized, somebody said once to me that, you know, some one person with autism, you know, one person with autism, you know, it's that diverse, sort of how it affects you. But also it was a little bit of a relief because there are a number of things that she was doing, which I then realized, you know, like just not understanding social cues. There were a lot of things like that where I just suddenly was like, oh my gosh. Right. Yeah. That's what that's about. You know?
Dr. Olivia Kessel:
So maybe some of the frustration that you might have been having in some of the things that were going on disappear because now you understood it a bit better.
Catherine:
Exactly. Yeah. And once you understand better, you can then be more compassionate as a parent. And that's been a big journey for me, a lot of the things that I quite frankly used to find quite irritating. I don't find irritating anymore because I understand them better. Yeah, definitely. So I was saying to you, I felt a lot of the time, it was a lot of this, why me? Why is it happening to us, et cetera now. I genuinely feel that it has been a gift for our family. I genuinely feel that. And I think that, I feel like that because my expectations around parenting and what I want for my children's lives is so different. I used to have quite a conventional view before I was, you know, when I was a new mom, I had a quite a conventional mindset about it.
Catherine:
They're going do well at school and they're going do their A levels and they're gonna go to university, and that's what's going to make us all happy. Now I don't feel like that at all. I feel like let's be diverse in the way we look at life and experience life. And maybe that means that people like Coco can offer something so different and unique that we don't think about. And I think we need to give those people more opportunity in life now. So, for example, I work in an advertising agency in London and anytime I come across someone, and I will say this, who's brave enough to tell me their diagnosis, because there's still a lot of people who don't want to admit these labels, anyone who's brave enough to tell me they're dyslexic or autistic or any of those things. And people, more and more are, that's where I'm thinking great, right, lets see how can we use them to fuel the innovation, the creativity, the divergent thinking at work to make us all do better, do a better job?
Dr. Olivia Kessel:
Yeah, the way you describe it, I also experienced myself. It kind of sets you free of all that preconceived road to success that you had for your children, or I had for my child as well. And it's gone, you know? Yeah. I'm just happy if she's succeeding in life and reaching her potential. And I don't know what that's going be. Mm-hmm. <affirmative>. And it's exciting and it has, it's freed my mind as well, so I completely understand what you're saying.
Catherine:
I know, and the goals around happiness and self-esteem for me now are way more important. So with my sons who you know, obviously came after Coco, I now feel like, actually I'm not so worried about do they get 10 out of 10 in their spending tests, and I am more worried about do they feel like they're progressing? Do they feel like, do they come home from school happy? If they're not happy, why are they not happy? And I explore more of that. And also, I mean, it started for me, it started a whole spiritual journey for me as well, about being more present. U a friend of mine recommended a book, the Power of Now. There is nothing in that book that doesn't help with being a better parent. It's just fantastic. I can pass on those skills to the children as well. And I know at the Unicorn, they teach a lot of mindfulness skills and breathing techniques and all of those things, which again, I think could be applicable to all children and helpful for all children. So I bring that home now from Coco, from what she learns and, and teach my other children. I think we're all becoming more rounded human beings as a result of it. Which is beautiful, really.
Catherine:
Yeah. Absolutely. Amazing. That's why, I mean, it's a gift, right? It's an absolute gift.
Dr. Olivia Kessel:
It is a gift. And, and it's, and it's a journey to finding that gift, I think, for parents as well.
Catherine:
Yes, it is.
Dr. Olivia Kessel:
As you've described it can be, unfortunately, those labels are very hard for parents to circumvent or to get across. I mean, you've done a really good job, it sounds like, of being able to go beyond the Rain Man stereotype. Yep. <laugh> <laugh>,
Catherine:
Yes.
Dr. Olivia Kessel:
Yeah. But
Catherine:
It's, it's tough, right? So we are really lucky because we have children in a specialist school. Goodness knows what we would be going through if, if, if we didn't have, if Coco wasn't in that setting. I think you have to really advocate for your children, or any child, but especially neurodiverse children, you have to really advocate for them. And, you know quite a few parents whose children are really, really struggling and they're getting to school refusal and, you know, it's a very challenging environment out there for any children who learn differently.
Dr. Olivia Kessel:
Yeah. And there's not enough resources, even in some schools that have autistic specialists units or dyslexic specialist units, they're oversubscribed. So it's very hard to get your child into them.
Catherine:
Yeah, it's an interesting point you make about resources and this opens up a huge can of worms for me. So I just feel like the, the way the schools are measured in terms of success sets off a whole raft of issues with the way our children are taught. And what I mean by that is if the schools were allowed to spend a long time on a particular topic and be able to provide those immersive learning experiences to provide practical application, so the whole class could benefit from it, if the classes were smaller so that the children were able to respond and interact to that information in different ways, and that's okay. And they weren't being measured on the same set standards for every single child for every single year. That is, that would make a big difference. If we could change all of that, if we stopped segregating children by year, that would make a big difference.
Catherine:
Because, you know, some children learn, get on with English more quickly than they do maths. And so therefore the years shouldn't be the thing that's affecting that. It should be where they are progressing. I have learned recently more about some more progressive schools where there, there isn't a curriculum. There isn't even, you know, the teachers get voted in by the school children. Yeah. And then some schools go so far as to just literally allow the children to do whatever they want. I read it recently in this fantastic book called, Stolen Focus, which is a brilliant book. What's interesting about those schools is loads of the children stop being, stop having the symptoms of the diagnosis that we have been given for our children. They stop having the symptoms of ADHD, they stop having the symptoms of autism because it's an environmental impact that the school is having on their, on the children.
Catherine:
I mean, that, it blows my mind that it's absolutely amazing. But, you know, if, if we could, I'm not suggesting we go so far, is to just stop teaching our children anything at all. But if we could be a little bit more child led, if we could be a bit more immersive, if we could have some, you know, I don't know any child who doesn't love a school trip, but they do them like once a term, if you're lucky, should be doing them every week. There's stuff outside, there's stuff everywhere that they could be learning from.
Dr. Olivia Kessel:
So but to your point, you can't test on it. It's not standardized. So it's, um, yeah. It's, it's the wrong, it's the wrong way to measure. It's an outdated system, really. Yes. I mean, why do kids need to learn facts? Yes. I mean, you can look it up on Google.
Catherine:
Numerals.
Dr. Olivia Kessel:
<laugh>, you know, <laugh>. Yes. You know, why do they need to even learn their multiplication tables? Yes. You have a calculator.
Catherine:
Really excelled.
Dr. Olivia Kessel:
Education hasn't moved
with the times. I mean, it's more important that they learn how to, you know, research stuff, how to speak about it, how to
Catherine:
Collaborate Yeah. Collaborate in teams. Yeah.
Dr. Olivia Kessel:
You know, that's going put them in good stead for their life outside of school. Yes. Not just getting a score.
Catherine:
I I read this fascinating research and they looked at children's creativity when they started school and they tested for it and they were off the charts in creativity. And then they tested the same children every single year as they went through school. And every single year their level of creativity dropped. And so basically what we're doing is we are educating out of our kids creativity and innovation and then what's the one thing that you need when they get into the workplace? Creativity and innovation. So we have to start learning it. You know I have to teach people at my work how to brainstorm, how to think creatively, it is bonkers. And that's the way that you get the most out of life is, is thinking like that.
Dr. Olivia Kessel:
Yeah. It's so, it's so true. I also think your point about smaller classroom sizes as well, when you have 30 kids, you don't have a teaching assistant anymore. You just have one teacher who's maybe not being trained in, in special education needs. Because I would say, one in five people is dyslexic, you know, I don't know the facts for autism and for ADHD, but I think they're pretty high as well. So they have no training and they have a large classroom. They're set up for failure.
Catherine:
It's crowd control. Yeah. Isn't it? Yeah. I mean, it's a very, very big challenge. But, you know, I think it's something like you asked about statistics, but I think it's something like 30% now of children have some kind of special educational need. So like I said, I don't know if it's necessarily resource thing. I don't know if it is. We've got the schools, we've got the spaces, we've got the teachers. It's the style of learning that has to change. I think
Dr. Olivia Kessel:
I would argue both. It's a style and it's also the, the, you know, I think you could have big classrooms with also smaller units for kids that really need to have that, that smaller learning. But I think all kids benefit from, I mean, if you think about when you're in a business meeting, If there are 30 people in a business meeting, there are people that never get heard. Yeah. If it's a smaller meeting, people get heard mm-hmm. <affirmative>, you know, so I, I just don't think it's as effective when it's a, a large, large classroom.
Catherine:
Yes possibly not.
Dr. Olivia Kessel:
I think of the Zoom calls we've had over Covid with, you know, a hundred people, you know, <laugh>, and then you have the few loud people,
Catherine:
<laugh>. Yes.
Dr. Olivia Kessel:
Yeah. That are heard a lot. What advice Catherine, would you give to parents? Like, you know, the school kind of, it sounds like, and, and Covid kind of pushed you into, into your journey mm-hmm. <affirmative>, but if you could advise parents out there, what were some of the looking back moments, it's always easy to reflect, right? Yeah. Um, oh
Catherine:
Yeah. Gosh, you know, I had do a lot of, if only I had... about this, which is, you know, terrible. We always do. Yeah. Everyone does. Yeah, exactly. So generally I would say if you think something's going on with your child, it probably is, you know, I now know what it's like to parent a neurotypical child. And it is a world of difference. And I think you've just gotta give parents some credit for understanding, even if it's your first child for understanding that there's something else going on or something, something different. There's a fantastic book called Differently Wired, by DeborahReber. She's also got a brilliant podcast called Tilt Parenting. Anyone who has a child who thinks a bit different, I would read that book. It's really good. You have to advocate for your child. So you have to sort of almost put on the big girl pants <laugh>, and you go in to see the GP, you go in to see the school.
Catherine:
You just keep on finding people to talk to squeaky wheels get the most oil. In my experience, I wouldn't say that the school necessarily felt like they were on my side. I feel the school Coco's at now, I feel like we are a team and they're on Coco's side, we're all on Coco's side, whereas her previous school, it felt a bit like them vs us. I think in that kind of situation, you've got to just stand up to them and you've got to got to advocate for your child and push for things that you want to be put in place for them. So for example, I'll give you an example. In her mainstream school, they kept taking her out of the classroom. I didn't want her to be taken out of the classroom. And I was, you know, I was paying for a full-time person to sit next to her. They could have done that in class. So, looking back, I didn't make enough fuss about the fact that I didn't want her to be taken out of the classroom all the time.
Catherine:
But now I would, now I would say you need to stop taking her out of the classroom. One thing I found really helpful is just reading and listening to as much as I can. In America they tend to be a little bit further ahead in, in some of this. So there's a lot of really good resources from America, which I've been listening to, and which I've read, which have really helped me then be able to say to the school, oh, I've read this piece of research, which says blah, you know, um, so yeah, so there's that. So sort of through myself in, into upskilling myself in everything that I could, because I tell you what, you are the only person who's gonna advocate for your child. You really are. And so you do need to, you need to take on that role? You absolutely do need to take on that role, um, for any of your children, but particularly for children with special educational needs
Dr. Olivia Kessel:
And really push like, because sometimes it's easy to believe the people in power, right? People in the school, and I'm guilty of this too. You listen to them, right? Mm-hmm. <affirmative>, um, and you believe that they're, they're plotting the best path for your child. Yeah. You would hope that or, or believe it. I mean, I am a doctor and I believe that the school was, you know, they didn't even tell me about an EHCP plan was. I had no idea, until I was leaving. Then it was like, oh, well we could maybe help you. We had been at that school since she was three. Why was it never mentioned before.
Catherine:
You get a lot of gaslighting. And I found that with the doctor. So when I first went to the doctor, this was a doctor who isn't my family doctor, it was the first person I saw. And he went through a list of questions and asked, is she sleeping? And I said, oh yes, she sleeps like an absolute baby. Well, she can't possibly have a ADHD then. So I go, okay, fine, he says she can't have ADHD thinking in my head. She's definitely got ADHD, <laugh>,
Catherine:
<laugh>. And then, then I thought about six months later, you know, all this time passes, I'm gonna see my family doctor, because he's brilliant. I went to see him, she sleeping. I said, well, yeah, she sleeps like a baby. He said, well, some children do and some children don't. So it's still worth investigating, you know, like, oh gosh, finally someone's actually listening to me. And also when the school, the school used to say to me, well she's absolutely fine here. You know, because I used to, every time, every day I picked her up, she'd be in such a state of social exhaustion from masking all day and towing the line and pretending that she knew what was going on. So she would take it out on us and the school tell her, if she's been absolutely fine here all day.
Catherine:
And, I realize actually what they meant was, she's brilliant at pretending when she's at school. She's brilliant at masking when she's at school. And I realize that's what was going on. So you could often with the school, you've got to be really careful about whether your child is genuinely okay or are they just able to push their feelings down and mask and pretend that they're okay. And is that what you want for your child? Do you want your child to feel that they have to go into school and pretend all day to not be themselves <laugh>?
Dr. Olivia Kessel:
Especially when they come home and then their real selves come out.
Catherine:
Yes. And they're exhausted and they are upset and anxious and their minds all over the place because they've literally been trying all day to push all of their natural instincts down in a way and not be who they need or want to be. That's absolutely, I think that's so sad. It's awful. And so again just be really careful about what the school are telling you.
Dr. Olivia Kessel:
And that you have to trust yourself, trust your child and you have to get your information externally and then validate it and never stop fighting until you find the right solution Yes. For your child and your family.
Catherine:
I think as humans we have, we over-rely on language too much to the detriment of trusting our instincts. And I think if we tuned in more to our instincts, we would make better decisions on behalf of ourselves and our children. And I look back now and I think I should have tuned in more to my instincts because they were all ringing alarm bells and I was trying to, well, I was being told by the professionals to ignore it, whereas I knew what was going on.
Dr. Olivia Kessel:
Yeah, well, I mean, and then having the delay in the assessment, so you can't actually get that external validation mm-hmm. <affirmative>, um, about it either. You know, it's, it's challenging for parents. So it's, it's, you know, be kind to yourself, you know? Yes,
Catherine:
Yes. Exactly. Be kind to yourself and you can't fix what's gone before, but you can fix what goes ahead. And so now if I can advocate for my children, give them the tools that they'll need to live a better life, learn myself so that I can help them, that that's all the things that I do now. Take the pressure off that sort of conventional expectation as well.....
Dr. Olivia Kessel:
Which is truly liberating, isn't it?
Catherine:
It is, it's truly liberating. And also, you know, what, what you think is, what you think success looks like is just so not what it actually does look like these days. And I do think that that is one good thing. I think the world is changing and the world is going to embrace more diversity in every single way. And so I do think that's going to be such a positive thing for our kids. I really do. I I see it in the workplace. I see people wanting those skills. I think it's a really positive picture ahead. I really do.
Dr. Olivia Kessel:
Well, you know what, thank you so much, Catherine. I really appreciate your time today, and I, you've inspired me. You have taken us from being scared of a diagnosis of autism and ADHD to looking at really the positives and what it can mean in terms of freeing ourselves up, freeing our children up and towards a brighter future. So I really, really would like to say thanks for coming on the show today.
Catherine:
No, it's been an absolute pleasure.
Dr. Olivia Kessel:
All right. Thank you
Dr. Olivia Kessel:
Thank you for listening and being part of the SEND Parenting Tribe. If this is your first time joining us, remember to follow us so you can join us weekly for more insightful interviews to support you and your children on their educational journey to reach their potential. Next week we'll be exploring the need for an assessment by an educational psychologist, Dr. Gemma Levy, and how this can really help you to create an educational roadmap for your child. Please also, if you have the time, reach out to us on Send Parenting on Facebook and Instagram. It'd be really great to hear your comments on the weekly episodes and also to learn what you would like to hear next. Wishing you and your family a happy week ahead and looking forward to you joining us next week.