Wisdom Shared with Carole Blueweiss

The Gift Of Adversity: A Father’s CFS, His Daughter’s Dravet Syndrome

Episode Summary

In this episode, I had the privilege of speaking with Simon Ratcliffe—a former advertising executive, husband, father, and podcaster who lives in the UK with his wife and their three children. His podcast, “Turning the Tables,” offers candid and inspiring stories from people who have turned adversity into advantage. It was born out of Simon’s own life experiences, including a severely debilitating bout of Chronic Fatigue Syndrome, and his desire to help listeners find new purpose and fulfillment in life. Simon shares about life as a successful businessman and about parenting his 20-year old daughter Francesca who was diagnosed at age three with Dravet syndrome. Since then, Francesca has taught him so much—from how greeting people with warmth opens the heart, to how unconventional approaches can lead to amazing outcomes. And his own bout and recovery from Chronic Fatigue has given him tremendous insight into—and compassion for—the experience of adversity and the possibility for transformation that it unlocks. I ran into some adversity myself when I had to rely on the backup audio when putting together this episode. Sometimes wisdom can be found amidst the messy reality. That’s certainly true for this episode, because this story was meant to be told.

Episode Notes

RESOURCES MENTIONED IN THIS EPISODE

Dravet Syndrome (aka “severe myoclonic epilepsy of infancy”)
https://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome

https://www.dravetfoundation.org

Chronic Fatigue Recovery Program: ANS Rewire
https://ansrewire.com/

Simon’s Podcast: Turning the Tables
https://www.podpage.com/turning-the-tables/    

Simon’s website
https://www.brandwithsimon.com/


SIMON'S RECOMMENDED BOOKS

A New Earth by Ekhart Tolle

The Surrender Experiment by Michael A Singer


EXCERPTS FROM THE INTERVIEW
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 9, Simon Ratcliffe, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”

It isn't a straight line to recovery from Chronic Fatigue Syndrome

We're in the middle of COVID right now. There are many people experiencing very different symptoms and no one has the answer.

To get through a chronic illness, you have to completely reframe what the idea of recovery is.

It takes a long time for your brain to recondition itself or retrain itself around positive thoughts.

Every time I had a negative thought, I would reframe it in my head.

It was clear that a developmental delay would mean that she would need in a special school.

Lot of kids with conditions have a lot of potential, but because of the resources needed to bring that out in a child, they end up settling for good average.

Education is more geared around helping with independence, which is fine, but a lot of children like Francesca will not be able to live an independent life. 

People with special needs, need  to be categorized as important as any other diverse group.

Recognize that the situation you are in, if you have a child with special needs, puts much greater pressure on you.

We need to see individuals not labels.

It took the chronic fatigue to enable me to completely re reboot my mental state, my life, my priorities, my thinking.

Why don't we live life with rose-tinted spectacles on? Why is it a good idea to be painfully realistic about everything?

Episode Transcription

[00:00:00] Simon Ratcliffe: She's absolutely brilliant at puzzles. She can do thousand-piece puzzles better than anybody else can. She sees things by the connection of the pieces and the colors, so she wouldn't, like most adults say, oh, let's start round the edge and then we'll do the bit in the middle. She starts with a symbol or a color. She's got amazing eyesight for detail. 

[00:00:27] Carole Blueweiss: Welcome to Wisdom Shared, where parents are the experts and connections inspire change. My name is Carole Blueweiss, and today on my ninth episode, I interview Simon Ratcliffe, who I met at a Seth Godin podcasting workshop. In his podcast, Turning the Tables, Simon interviews people who have overcome diversity, something Simon is familiar with himself because of his experience suffering with chronic fatigue syndrome and eventually recovering from this little understood chronic illness, which had a huge effect on how he approached his life going forward. 

[00:01:02] Simon Ratcliffe: People talk about the gift of adversity, and I think that was. Because it changed my outlook on life.

[00:01:08] Carole Blueweiss: I had the privilege of talking to Simon about his life as a successful businessman and as the father of Francesca, now 20 years old, who was diagnosed at age three with Dravet Syndrome, also known as severe myoclonic epilepsy of infancy. Simon generously shares his experience as Francesca's dad, and he describes how Francesca has taught him how important it is to get to know the special needs kids who are on the bus, so to speak.

[00:01:38] Simon Ratcliffe: Over a period of time, I just got to know those kids. Being able to engage, getting to know their names, it completely changed my whole outlook, and I realized that that transition is what everybody needs to go through, that seeing individuals not labels. 

[00:01:56] Carole Blueweiss: Simon describes Francesca's special role in his recovery while he was sick. He takes us on a journey of his own self-awareness, both of his own inner workings that may have contributed to his illness and his new outlook, and also to the awareness of Francesca's unique qualities, the importance of getting to know each child for who they are as people first. I started Wisdom Shared to provide a forum for parents to share their reality, their wisdom with others as experts on the front lines.

[00:02:27] Simon's story exemplifies the importance of putting on the oxygen on oneself first before helping other children, as the airline attendants recommend before taking off on an airplane. Simon is a living example of why this is important. Simon also speaks about inclusion and diversity in education and in the workforce when it comes to people with special needs.

[00:02:49] I ran into some adversity myself when putting together this episode as I lost the original recording and had to rely on the backup audio. You may notice that my voice is not well recorded while Simon's recording was a saving grace, which is why I look at today's episode through rose-colored spectacles, a reference that Simon uses in this interview, which reflects seeing the positive, the wisdom, and the beauty amidst the messy reality. This story was meant to be told. 

[00:03:22] Today, I have Simon Ratcliffe on my podcast. He is an entrepreneur, a podcaster himself, a photographer, a videographer, a husband, and father of three. Hi, Simon. 

[00:03:36] Simon Ratcliffe: Hi, Carole. Good to be here. 

[00:03:39] Carole Blueweiss: Welcome to Wisdom Shared. 

[00:03:41] Simon Ratcliffe: Thank you for inviting me. 

[00:03:44] Carole Blueweiss: Tell us a little bit about Francesca. What was her birth like? What is she experiencing now? 

[00:03:51] Simon Ratcliffe: Francesca was a completely normal birth. She was our third, so nothing seemed out the ordinary. But what happened after, I think it was Christmas, when she was six months old. We were sitting, preparing Christmas, preparation for Christmas the next day, and she was in her cot on the kitchen floor. You know, one of those bouncers that you get that you put the kids in, and we suddenly looked around and she was fitting, quite violently fitting. 

[00:04:19] Carole Blueweiss: Having a seizure? 

[00:04:20] Simon Ratcliffe: Having a seizure, yeah. Yeah, having a seizure. It's one of those moments, obviously you are terrified, I mean, and so terrified that we didn't even ring the ambulance, which is what you kind of would think you normally do.

[00:04:36] We just put her in the car and drove her to the hospital. Literally. Fortunately, it was only about 15 minutes away or so, but we didn't think to do anything. Literally just, you know, you think your child is dying, basically. So, you know, you think, I can't be sitting, waiting here for an ambulance. So we just drove her to the hospital.

[00:04:55] She had the seizure for two and a half hours. And eventually came round. Obviously they gave her various medications to help her come round. At that point, you know, there is something called febrile convulsions and completely abnormal for a child to have a seizure when they're younger. So we were unsure and the medical people were unsure about what, you know, what was this? So we were discharged, but then she carried on having those seizures at regular points, and obviously then there had more tests and blah, blah, blah. And eventually she got diagnosed with this condition called Dravet Syndrome, which was discovered by a French physician called Charlotte Dravet.

[00:05:43] And it's a relatively rare epileptic condition with associated developmental delay, significant developmental delay. And so over the ensuing years, they worked with different types of medications to try and control the seizures, not with a great deal of success in the beginning. You know, she would sometimes fit two or three times a day.

[00:06:06] It was very intermittent, but laterally, they got control of it, and her seizures were much less frequent which enabled you to start to normalize life to some degree. However, it was clear that a developmental delay would mean that she would need, you know, special school and special help. 

[00:06:28] Carole Blueweiss: How old was she when she was diagnosed with that?

[00:06:32] Simon Ratcliffe: Finally diagnosed, I think she was about three. By that time, three. 

[00:06:36] Carole Blueweiss: So you went through a lot of years, just not knowing, understanding what was going on? 

[00:06:40] Simon Ratcliffe: Well, yeah. Sort of suspecting, but not finally knowing. 

[00:06:45] Carole Blueweiss: And I'm just curious, was the developmental delay in this kind of syndrome due to the seizures or would someone have that anyway?

[00:06:55] Simon Ratcliffe: Well, yeah, that's a good question. They find it difficult to distinguish between the two things, but they believe there is a genetic element of it, if you see what I mean. So it's part of the condition, although obviously if you have a long seizure at a young age, that does affect the development of the brain because it starves the brain of oxygen at a time when it's, you know, evolving. 

[00:07:21] Carole Blueweiss: Tell us about Francesca. What is she like as a person? 

[00:07:24] Simon Ratcliffe: She's now 20. She still is a child in many, well in all regards, cognitively. But she is a very engaging, very happy catalyst, really, for other people. She will change the nature of a conversation. She will change the nature of a room. She will shine a light. It's just a tremendous gift she's got, quite unlike anyone I've ever met before, really. She has a way with people, which is very open, very loving, very good natured, which brings out the best in anyone. And it doesn't matter whether you are the man delivering the curry on a Friday evening or whether you're a close relative or whether you are a man or a woman that she's met in the street.

[00:08:13] She treats pretty much people the same. If you show an openness to her, she, well, she actually shows the openness first and generally speaking, what that does is condition the response. It's a fascinating psychological study, actually. Yeah, she has a transforming effect. 

[00:08:30] Carole Blueweiss: And what are some of the things she likes to do?

[00:08:33] Simon Ratcliffe: She's absolutely brilliant at puzzles, so she can do thousand-piece puzzles better than anybody else can. She sees things by the connection of the pieces and the colors, so she wouldn't, like most adults say, oh, let's start round the edge and then we'll do the bit in the middle. She starts with a symbol or a color or something, or pieces, which she's got amazing eye eyesight for detail.

[00:08:59] So she loves doing that. She loves all creative things. She loves painting, drawing, she loves singing, she loves drama. She loves all those kinds of things. She loves sports, you know, playing it to the level that she's able to. 

[00:09:16] Carole Blueweiss: How do you see labeling Francesca a special needs child? Labels, do they fit into your outlook on how you see it as a dad?

[00:09:27] Simon Ratcliffe: I think it's a whole difficult territory, isn't it? Special needs, I'm not too bothered by the term special needs. To me, it's much more about people understanding what that means in the sense of diversity. And understanding that anybody within that category may have multiple different needs.

[00:09:53] The one thing I really feel sure about is that the way we teach individuals with that, certainly children with that condition, is still quite limited. I see a lot of kids with these conditions have a lot of potential, but because of the resources needed to bring that out in a child, you know, that they end up settling for good, average.

[00:10:21] So the education is more geared around helping their independence. Which is fine, but a lot of children like Francesca will not be to live an independent life. So that is limited horizon for them. 

[00:10:37] Carole Blueweiss: So what would be an alternative in your mind? 

[00:10:39] Simon Ratcliffe: I think an alternative would be a system which looked at the individual and structured their education around and their development around those particular needs. Now it's easy for me to say, because inevitably, with that comes a cost. Because it means more resources and more people and more expertise. But I think that with the, particularly with the development of technology and greater understanding of the science of how the brain works and all those things, it feels to me like in the future there are the resources available to revolutionize the way we help special needs people develop.

[00:11:22] But it requires a lot of commitment and a lot of expertise and it requires people with special needs to be categorized as important as any other diverse group. 

[00:11:35] Carole Blueweiss: And the idea of diversity, I think, is really interesting. You know, you have the diagnosis and then it's as if everyone has certain traits because of a diagnosis as opposed to, well, let's pretend there was no diagnosis and you have a child.

[00:11:52] Simon Ratcliffe: Yeah, yeah, absolutely. That needs to happen because I think most of the development work inevitably in this area is always done by charities, special interest groups, rather than at a governmental policy level. 

[00:12:09] Carole Blueweiss: What kind of schooling did she have? 

[00:12:11] Simon Ratcliffe: She started off, which was the basic, what happens in British schooling is that in the first instance, she went to a mainstream primary school. She was what they called statemented, which meant that she was then able to have one-to-one support. But of course, it becomes very apparent very early on that they are behind their peers and therefore you have a slightly ridiculous situation where she will be being taught on her own in the corner of a classroom while the others are doing something entirely different.

[00:12:44] And they, you know, bless them. They do try very hard. So the people who we've had to engage with as a result of Francesca, I would have the highest regard for the people who are caring, committed people, but sadly lacking the level of expertise and the backing that they need to transform sort of education and care of this diverse group.

[00:13:10] Carole Blueweiss: What are some of the titles of those professionals that you speak of? 

[00:13:13] Simon Ratcliffe: Speech and language is probably the most obvious specialism that schools will engage. 

[00:13:19] Carole Blueweiss: Did she need rehab specialists? Like occupational therapy? 

[00:13:23] Simon Ratcliffe: Occupational therapy, that was it. She's accessing that more now because obviously now is in theory a transition period to her operating in a more adult world and in theory doing some kind of work.

[00:13:36] Carole Blueweiss: But in terms of her needs, her physical needs or attention or writing or even walking and running, was that ever addressed?

[00:13:46] Simon Ratcliffe: Yes, to a degree. She had physical therapy, but it was on a very ad hoc basis. Again, resources not there to deliver at the level. I mean, fortunately, she doesn't really have any significant physical disabilities. She's a little bit unsteady on her feet, but equally, she's got a remarkable ability, a hand-to-eye coordination, so, you know, for someone so slight, she's able to hit a ball quite a long way and, you know, kick a football and all those kind of things. So, sort of curious combination of things. 

[00:14:19] And she does actually now have someone who comes to see her weekly to give her that, you know, to help her motor skills, but it's on an ad hoc basis. It's not, we've not really got systems in place to make all that easily accessible for people. 

[00:14:34] Carole Blueweiss: What is her relationship with her siblings? 

[00:14:38] Simon Ratcliffe: Very good. You know, obviously they love her and care for her very much. She's still capable of having an argument with them and they're capable of having an argument with her, which is nice. Because that means she's a normal part of the family. Yeah. I mean, and, and I think, you know, the unspoken side of it, of course, is that it will undoubtedly have affected their lives because when they were younger, you know, their mother's attention was directed entirely towards Francesca. For obvious reasons, because it seemed like she was on the verge of, you know, death all the time.

[00:15:15] So, as you can imagine, that was something that required 24-hour, 24/7 attention. So, you know, yeah. The other two obviously had to take something of a backseat, which had been difficult for them. 

[00:15:31] Carole Blueweiss: And have you talked about that? Has that been addressed in some kind of formal way? 

[00:15:36] Simon Ratcliffe: Yeah, we have from time to time. Yeah. But I'm not sure that whether they will truly understand the impact of that until later in life. They've been fantastic with her and obviously, you know, that they will have experienced the trauma of seizures firsthand. Sometimes they were in the position of having to deal with that and the aftermath of that and trips in the ambulance if that was necessary, and stuff like that. So they've been through the whole experience as well. 

[00:16:09] Carole Blueweiss: Have you seen any hints of the idea of post-traumatic stress from this kind of situation? 

[00:16:16] Simon Ratcliffe: That's an interesting question. I'm not sure I have, but that doesn't mean to say it's not there. 

[00:16:24] Carole Blueweiss: Well, I think that's also something that I have heard about in the sense that when parents are dealing with traumatic births, which was not your case, however, later in life there were some things that were traumatic to you. Everybody's so focused on the child and a little bit of what gets left behind in most cultures is the impact on the parents. And even though the child is gonna be fine, there was still that trauma. 

[00:16:51] Simon Ratcliffe: Yeah, I mean, and the statistics make grim reading of what happens to families with special needs children. I mean, the divorce rate is very high and lots and lots of problems. I mean, we've managed to be fairly resilient as a family, and so thankfully that hasn't happened to us. But it's not easy. Put it that way. 

[00:17:12] Carole Blueweiss: Do you have any advice for moms and dads out there that are struggling? 

[00:17:17] Simon Ratcliffe: I think awareness is the most important thing. To recognize that the circumstances are playing a very large part in whatever pressures and stresses that you have now. You kind of think, yes, I know that, but actually to understand that, you know, your behavior will be, and your partner's behavior will be affected by that. And you have to take that into account, manage your expectations of yourself and of your partner. 

[00:17:50] Carole Blueweiss: What do you mean by that?

[00:17:52] Simon Ratcliffe: Recognize that the situation you are in, if you have a child with special needs, puts much greater pressure on you. And therefore, if you understand that, you can perhaps understand behavior which may otherwise not be understandable.

[00:18:11] Carole Blueweiss: Can you describe from your point of view, your experience, what that pressure is? 

[00:18:16] Simon Ratcliffe: I think you've got to bear in mind that looking after a child with special needs, which generally speaking means more of your time, more of your effort, more of your energy, more resources, adds another layer on top of what already is a complex situation. If you're aware of that, you are more prepared to understand. 

[00:18:40] Carole Blueweiss: Are you saying that the pressure is those, the extra attention that you have to have, the extra resources, all that, increases whatever normal natural pressures we have? 

[00:18:51] Simon Ratcliffe: Yes, yes. Yes, exactly. And, you know, it's the same, it challenges the way you are as a person, the way you think you are, or the way you think other people should be. There's multiple pressures that are brought to bear. 

[00:19:07] Carole Blueweiss: Would you put the word stress in there? 

[00:19:10] Simon Ratcliffe: Oh, absolutely. Yes, absolutely. Although I think with my new hat on, I would say that stress is basically, it's a concept of the mind, isn't it? It's how you view things. There is no such thing as stress. There's only how you view a situation, how you perceive things. 

[00:19:29] Carole Blueweiss: You ask a question in your introduction, do we flounder or do we fly? 

[00:19:33] Simon Ratcliffe: Yes, I was definitely floundering at the time, but I'm sure some people have seen the series Mad Men. It was a fair degree of similarity in my career in advertising. I mean, basically people used to work incredibly hard. It was a fast environment to work in and it put lots of pressure on from an early age, and I actually thrived in it. I mean, I really enjoyed it and in the end, I spent nearly 30 years in advertising. And I guess that was where sort of, I guess the genes of ultimately the illness I got, which was chronic fatigue syndrome, actually started.

[00:20:13] And I remember going to work one day in London. We'd travel on the Underground and I was going down the escalator and it was a winter's evening. And I thought to myself, you know, I just can't keep going on like this. Something is going to snap. And it was just a momentary thought before I sort of hurried on. And I remember seeing the people coming up the other side of the escalators, all looking incredibly strained and gray.

[00:20:41] And it was interesting looking back on it. It was like a moment. Nothing happened for another nine months until I eventually got hit with what I thought was a virus. And I went to the doctor and to cut a long story short, this carried on. I started to feel worse and worse and worse. But I didn't apparently have anything wrong with me until ultimately I was just, I wasn't even able to get into work. I was struggling to make it through a day. 

[00:21:10] Carole Blueweiss: Is this before you were married? 

[00:21:13] Simon Ratcliffe: No, this was after I was married and while I had all three kids. This is me in my fifties. Yeah. So that, of course, like everybody's normal life was going on in the back, had the most almighty crash. I literally could not get out of bed.

[00:21:27] A trip to the bathroom was the most I could imagine you could do in a day. And I was literally lying there for like nine months. Unable to converse with people properly, feeling like I was pretty worthless to the family. Couldn't work, couldn't speak to anyone, couldn't really watch television.

[00:21:47] And, yeah, it was pretty awful. And I got depression, not surprisingly, as a result of all that. In the limited amount of reading I could do during a day, which is about five or 10 minutes, I found this person in Australia who had the condition, had it for seven years and recovered, and he'd done that by actually setting himself the task as an engineer of understanding what was going on. And he put together a very coherent thesis for why people got the condition. And out of that, he developed a recovery program. And over the course of the next two years, gradually I got better. Lots of troughs on the way because it isn't a straight line curved to recovery from this condition.

[00:22:30] But ultimately, I have recovered and I've got my life back. People talk about the gift of adversity, and I think that was because it changed my outlook on life, my thinking, my perspectives, and a whole lot of other things. Which frankly, probably wouldn't have happened if I hadn't been through that situation.

[00:22:49] Carole Blueweiss: And it's particularly relevant right now to hear your story because of course every person and every virus and every sickness is different. But being that we're in the middle of Covid, right now, there are many people I'm sure experiencing very different symptoms and not anyone has the answer, and just to hear your story is very inspiring.

[00:23:10] Simon Ratcliffe: Yeah, I wouldn't pretend it's easy. I wouldn't pretend I'm anything out of the ordinary, except the one thing I would say is that, I've determinedly stuck to the program and I think for a lot of people with chronic conditions, they try things and when they don't see success, they change or they give up, they believe it's not working.

[00:23:33] And my experience is that to get through a chronic illness, you have to completely reframe what the idea of recovery is. You have to recognize it is a long process. And, of course, if you're someone in a job trying to look after a family, whatever it might be, that is incredibly difficult. Incredibly difficult, because you put huge pressure on yourself to recover.

[00:23:59] Carole Blueweiss: And what was the most helpful thing to you while you were going through that? 

[00:24:02] Simon Ratcliffe: I think the key component of it was what you might call sort of brain training, if you like, reframing your thought patterns. 

[00:24:13] Carole Blueweiss: So it sounds like what you discovered in part was that how you think actually affected how you felt physically.

[00:24:21] Simon Ratcliffe: Completely, completely. It's not a one night, you know, suddenly you wake up and think differently. It takes a long time for your brain to recondition itself or retrain itself around positive thoughts. 

[00:24:35] Carole Blueweiss: How did it affect your family? 

[00:24:37] Simon Ratcliffe: It was tough because I think one of the things, because of the lack of clarity about this condition, there is always that thought that somehow or other, ironically, people think, oh it's just in your mind. You know, it's not a real thing. Snap out of it. 

[00:24:53] Carole Blueweiss: It almost reminds me of how mental illness in general, as probably you have a big insight into that, which was part of what you had, but not 100 percent of what you had, which doesn't really matter. But the idea that there's this invisible thing going on in somebody and it's hard for the outside world to understand. I wonder what helped you the most so that people who have a family member or are experiencing this can know what to ask for in terms of from friends or family? 

[00:25:23] Simon Ratcliffe: You've got to utterly trust the other person. What they say is how they feel. It's not a made-up concept in their head, because when you have people around you who don't believe you, it undermines your own ability to recover, because the self doubt goes on. Is it that I'm a weak person? Is it that I just, you know, I can't do it and other people can? And is it something about me? And all that self doubt comes in. But it's hard. Very hard. 

[00:25:53] Carole Blueweiss: And that on top of raising your three children and having a relationship with your wife, how old were your children at the time? 

[00:26:01] Simon Ratcliffe: You know, my children were all late teen, beginning early twenties. My youngest, Francesca, who is my daughter with special needs, it's interesting because of all the people in the family who treated me the most normal, it was her because she didn't have the conceptual understanding of what was going on for me other than daddy's in bed all the time. So that was really interesting. And, I mean, obviously all the family helped with recovery, but she had a very special part of that. 

[00:26:33] Carole Blueweiss: Have you run into people that made you sad to do with how they see Francesca, their reactions or any kind of judgements by other people? Or has that not really happened with you?

[00:26:46] Simon Ratcliffe: I think she has something unique, which means that doesn't tend to happen. I think we're very lucky in that regard because, I mean, yes, people might look afar and think, well, why is she behaving strangely? Or she looks like she's younger than she should be, or, you know, it...I mean, you could make those observations from afar, but that's not really an interaction.

[00:27:10] That's whatever people were thinking. But I think that in terms of any interaction she has with anybody, I've always found people very engaged by her. I think that's probably something about her, something about her character. 

[00:27:26] Carole Blueweiss: Would you say that she basically requires 24/7 care? Is that right?

[00:27:36] Simon Ratcliffe: Pretty much. Yeah, pretty much. Yeah. Because obviously at night, you have to be careful because if she had a seizure and obviously because of her cognitive level, then most of the time she needs to be taken care of or watched at least the rest of the time. 

[00:27:52] Carole Blueweiss: And how do you manage that? Do you have someone helping you or is it just? 

[00:27:57] Simon Ratcliffe: We have been lucky enough to have someone, a nanny that helps us, well, there've obviously been lots of them over the years, which helps, you know, enable us to carry on working and things like that. 

[00:28:06] Carole Blueweiss: And is that something that's provided by your government or your insurance or is that private?

[00:28:10] Simon Ratcliffe: Private. And, you know, we are very fortunate to be able to do that. 

[00:28:14] Carole Blueweiss: And in England, do they have early intervention or they might call it something else? 

[00:28:19] Simon Ratcliffe: Yes. I mean, they have a lot of facilities. They aren't necessarily the ones that you would choose if you had the choice, if you see what I mean.

[00:28:26] Carole Blueweiss: Yeah. 

[00:28:27] Simon Ratcliffe: And they're limited. We've gone our own way. I think to some degree, and this is an interesting point really, is that within whilst not denying in any way her special needs, we've tried to keep our lives as normal as possible. If there is such a thing as normal. 

[00:28:48] Carole Blueweiss: Yeah. 

[00:28:49] Simon Ratcliffe: So, to avoid labeling and, you know, creating a sort of whole edifice around special needs, it's like any diversity. It's part of life, you know, it just happens that Francesca has a specific set of needs. She requires more help than most people will. She won't lead the normal life that we all conceive of. You know, you go and work and you get married and you have a family and settle down and buy a house and all that kind of stuff. That won't be her life pattern. But there are many other things that, positive things in place, if that makes sense? 

[00:29:23] Carole Blueweiss: Makes total sense. 

[00:29:24] Simon Ratcliffe: I mean, one interesting thing about perception, this is slightly going back a bit, but I remember when she went to secondary school, the school they paid for by the local authority, provide a bus, special bus to take children to wherever they are at school or college. And Francesca has always absolutely loved the bus. She absolutely adores getting on the bus going, you know, and she loves going to college or college now, but school, when it was, absolutely loves it. I think she loves the one-to-one attention. She just loves engaging with people, so it's all fantastic for her. 

[00:30:05] But one of the things you worry about as a parent is putting her on a bus with lots of other people with special needs. Before you knew. When she was about 8, 9, 10, there was that sort of fear about, oh, will she be okay? And, you know, and you have visions of certain types of children and worry, basically. It all feels a bit alien.

[00:30:27] And I remember we felt exactly like that about her going on the bus. Sort of anxiety, really. And I think really interesting because over a short period of time, but a period of time, every day that bus arriving, Francesca getting off and starting to be able to engage with the kids completely changed my whole outlook on special needs.

[00:30:55] So for example, you'd have a child at the back of the bus who would press their lips to the window, right? You kind of think that's bit scary in a funny kind of way. When you don't understand, you think that's scary. Another child that would rock in their seat and somehow or other it felt very uncomfortable.

[00:31:14] I'm not saying this is the right feeling, this is how you felt. But over a period of time, I just got to know those kids. And it became a really good experience, just sort of being able to engage, getting to know their names. You know, one of them, one of them used to call me dad for some bizarre reason, because my daughter would say dad, and so he would repeat dad, and that was a bit of a joke and stuff like that.

[00:31:39] So it completely changed my whole outlook on, and I realized that that transition as well, everybody needs to go through. That's seeing individuals, not labels. So I think, well, the majority of people probably in the camp I was in before I had that experience.

[00:32:01] Carole Blueweiss: Which was what? 

[00:32:02] Simon Ratcliffe: Which was anxiety, lack of understanding, sort of slight fear about abnormality. I think that's definitely changing. And things like the Paralympic games and the rest of it have helped that, I think. Particularly in relation to physical difficulties, but of course there's also mental difficulties as well. There's children that shout, that can't relate to people very easily, that, you know, there are so many different aspects of special needs, that people still need to be able to understand so that they can be part of society in a positive way.

[00:32:42] Carole Blueweiss: I'm just curious, have you ever thought about your chronic illness in any way as a response at all to the stressors that you had being a dad of a child with special needs?

[00:32:54] Simon Ratcliffe: Yeah, I know for a fact that people that get the condition is that it's what they describe as it's like a boat sinking. Too much weight on top of it. Eventually you add one more thing and the boat starts to sink. And I think that's absolutely true. So I wouldn't say it was the reason, but on top of, you know, the usual set of stresses and strains and pressures that people have, achiever mindset. I think that's another stress. You know, I would be the first to admit that I was someone who wanted to achieve a lot. Pushed myself, didn't listen to my body.

[00:33:34] I think the outcome of that control was in the end, the chronic fatigue. And I think it took the chronic fatigue to enable me to completely reboot my mental state, my life, my priorities, my thinking. It's like perfect storm. So all those things come together and suddenly the body says stop. 

[00:34:01] Carole Blueweiss: And then the mental stresses that we're not necessarily aware of, right, because they're going on in the unconscious. 

[00:34:10] Simon Ratcliffe: Yeah. Yeah, and there's no doubt that, you know, obviously having a child with special needs was part of that cocktail. So I don't think it was the reason it's own, but it was, you know, that there's no doubt in my mind it was the body saying you have to change the way you exist. And if you don't, then we're not gonna let you go back to normal.

[00:34:33] Very powerful. Certain scenarios apply a certain extra level of stress because of, back to this word, expectation. Overall, gender expectations are becoming challenged by the day. But people of my generation grew up with parents where the father was the breadwinner, that looked after things, that kept people safe.

[00:35:00] All those kind of, you know, rather obvious cliches of masculinity. And so I think when things aren't quite as they should be, that puts an extra pressure on you because there's a feeling of responsibility there. And also I think change in expectations, quite rightly, of women in the world add another dimension to that because it's changing from the roles that one's might have been brought up in with one's mother's role.

[00:35:29] And therefore I think that does produce a sort of cocktail of implications for men and women that we haven't had to deal with before, sort of challenges a lot of precepts. So, yeah, I mean, I think we are living in times when there are many more pressures than perhaps there were. 

[00:35:47] Carole Blueweiss: Did you see a therapist at that time?

[00:35:49] Simon Ratcliffe: Yes, I did. Yeah. Some help in an overall process of understanding better my own psychology and, you know, the way the mind works and the way to live your life. As I said, I talked about mindfulness. I think that's quite important. You can frame things one way, which says, okay, we have a daughter with special needs. She will never be able to live an independent life. Her medical condition means she's always at risk, something awful happening, and so on and so on. 

[00:36:23] Or you can look at it and say, we all learn from our children. We've been given a gift of someone who has had an amazingly positive effect on us as a family, who has loads of talent, who basically changes the, you know, the nature of relationships with other people, blah blah blah blah blah.

[00:36:45] So that's all that is, is describing the same set of situation, but in a different way. Now, perhaps you'd say though, that's rose-tinted spectacles. But why not? Why don't we live life on rose-tinted spectacles? Why is it a good idea to be painfully realistic about everything and thinking of all the, you know, the downsides of everything and all the negatives? Doesn't change them. Doesn't make you do anything different. Because these are things that are in people's head. So there's no difference in what you actually do in the end as a result of that negative perspective. It doesn't change anything other than how you feel. 

[00:37:32] Carole Blueweiss: What would you like to see change for people who have challenges or disabilities like Francesca? 

[00:37:41] Simon Ratcliffe: The big issue for me is when someone like Francesca transitions into work. Or, in theory, being of a working age, what happens there? And I think that's where the wheels come off, basically, as far as national governmental support. Not saying there isn't anything, but it's very hard. Businesses are not generally set up for people with these kind of sets of complex needs. There are charitable organizations, there are some schemes which local authorities run, but it is not, in no sense is it a well-oiled machine for helping people move, people who have special needs, or enable people with special needs to work. 

[00:38:24] And, you know, my vision, this is a bit like dream time, is that to create a brand that's as attractive to people as Virgin or Costa Coffee, or any great brand you can think of that employs people, a large portion of people, or a significant proportion of people with disability, but it's based on whatever product or service that is. People buy that because it's an aspirational product, not because of sympathy or because it's a charity or. Because most of the businesses, in all honesty, that people are involved in are not those kind of businesses.

[00:39:12] So I, you know, I can imagine, you know, retail, like I could imagine a florist, I could imagine a hybrid coffee house, a cafe florist. I could imagine that as a concept, which you could use, you could have special needs people playing a significant role in that as a business. See, at the moment, there are so many businesses who've got a diversity committee, but that diversity is entirely focused on ethnic race or gender.

[00:39:52] It's not now, it doesn't even touch the sides of disability, nowhere to be seen. Do you know there are more disabled people in the world than there are people of mixed race? You know, we have to be clear. Not every single child will be able to be employed. Some have conditions which might would make it very, very difficult. But there are plenty of people who are within the special needs category who could. 

[00:40:19] Carole Blueweiss: Simon's podcast, Turning the Tables, can be found wherever you listen to your podcasts. Thank you, Simon, for joining me today and sharing your wisdom with my audience. 

[00:40:32] Simon Ratcliffe: Thank you, Carole. I've really enjoyed doing this interview. You've asked some great questions and it's made me think quite hard about special needs and how Francesca has influenced our lives. So I appreciate you asking those questions. And to all those people outside who have children with special needs, I hope this has been of some insight for you and help.

[00:41:04] Carole Blueweiss: Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all our other episodes. Visit caroleblueweiss.com. If you like what you are hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month.