Parenting Autistic Children David Grant MBE - burst 2

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This episode will be doing things a little bit differently, though, as I'll be interviewing my husband, yes, fellow broadcast a vocal coach and leadership coach and campaigner David grant. As we talk about our own experiences of raising four neurodivergent children, welcome to the show David. Wow, nice to be here, Gary. So for those people that don't know about our family, could you just give us a rundown of our kids? Okay, we have four children our eldest olive is an actor. Our and olive is 27. Next in line is Thailand, who is 20 and also an actor. Next in line is Arlo, who is 16 and at school. And next is in line is Nathan, who is 12. And supposed to be at school, but currently not in school. Yes, okay, so you just had a little bit of a hint towards their not in school. That's been a familiar experience for us with three out of the four children. Because you've named all of their ages in their names and stuff. But what about their diagnoses? Just run me by some of the diagnosis that our children have got. Okay, I will, but because this is like a pick and mix at which point I'm bound to forget some. Would you jump in if I forget any? Yes. Because you know them as well as I do. Olive, has a disparity. And ADHD, Thailand is on the autism spectrum. And Arlo, third is on the autism spectrum. And Nathan. Now I got a minute rewind rewind back up back up. Arlo is autistic and has ADHD. Of course, yes, I forgot all of it as a whole a whole suit of what coterie. Yeah, these disabilities, they're traveling gangs, don't they? And has ADHD. Nathan a 12 year old has ADHD DMDD. Probably dyslexia. Even though they're still working on a diagnosis, and yeah, we have, you know, at some point, if anybody does disability bingo, we jump up and say house. Yeah, well, it's interesting you say disability because I don't really think of them as being disabilities. I think of them as being just different. I don't think of them as there are any disabilities in the light of the fact that the world is so unaccepting. That's very true. I think that one of the things with an invisible disability so it's called is that, you know, if we what we have done in our family is to recognize that the reason why it's called a disability is because some people find it more challenging to do things that neurotypical people take for granted. On the other hand, without children, it's also proven to be a different ability, because so many of them are able in ways in so many ways that they might not otherwise be able. You know, the gifted in ways that they might otherwise not be gifted. They're different and see the world in ways that absolutely challenge a neurotypical vision of the world. Yeah, and that's what we love about them. So tell me what it was like when all of these diagnoses that you've just mentioned there started to pop up. How did that come about and what were your feelings? Well, it's interesting. I've spoken to so many parents because we run parent groups. And I spoke to so many parents about the initial diagnosis and the reactions have been very, very many in varied, you know, for some people, it's a bit of a shock for some people it's almost like a disappointment for others. It's a surprise for others. It's an explanation. And I would say for us, well, certainly for me, it was in part an explanation. And also, in part, a sort of a wake-up call that said to me, this journey isn't going to be anything that you might have imagined. It is going to be. We don't know what it's going to be, but what we do know is that it's going to, it's going to plow its own field and chart its own course when we first got the diagnosis of our second and third Thailand and Arlo, the ones who are now 2016, which we got the autism diagnosis on the same day. Tai was 7. Aloe was three. What was that like for you? I have to be honest. And there was absolutely no sort of like heightened emotion connected to it, concern or disappointment or what was there was, okay, I need to now discover what this means. What this means for them, what this means for us and how it makes things different. Is it going to make things different if it does? How is it going to make things different? Because it didn't change them in any way. They got in the car. You got given the diagnosis and then they just got in the car and they were still Tyler and Arlo, weren't they? They had to change. But with that bit of paper yeah, it didn't change them one dot. One shot. One bit. But what it did change was my awareness of who they were. What it did change is my awareness that they may see the world a different way. And I didn't know what that was going to be, because there are only 7 and three, but what I did know was that the carnage journey that you can prescribe and chart out and say that the raising of a child is likely to fall within these parameters. There may be anywhere from track a to track B but the train is going to run along these tracks in some way. That went completely out of the way. I didn't realize at the time just how far out of the window it was going to go. But I did think, okay, this changes things. And one of the, I mean, some people might call it exciting with the benefit of hindsight, but at the time slightly sort of slightly nerve wracking things was having no idea of what it meant was going to change as they grew and as they developed. And as they began to inhabit the fullness of their personhood and understand the fullness of their identities, what was going to change. Well, we didn't know. And I think that, you know, there's a saying that everyone to see person probably knows, which is even if you've met one autistic person, you've met one autistic person. And even with just having two children on the spectrum in the family, the presentation is so entirely different. Yeah, they are. If somebody said to me, when we got the diagnosis, this is what autism looked like. And used one of them as in illustration. It would have completely excluded the other. Because the other one wouldn't have got a diagnosis based on that. It's very, very good point. So you've talked about what it was like to kind of grow in your knowledge of them and who they might become and to understand them a little. But what about parenting? Have you changed as a parent? This was 2009 if I remember. So we've had a good few years since. Have you changed as a parent? As a parent, I am unrecognizable from the parent I was in 2009. Now let's be really honest about this. Anybody who has raised a child will say, well, yes, of course, the parent you are to a 16 year old and the same parent you are to three year old. So there's the natural evolution of your relationship that happens as your child grows and matures. But there's also, I think that certainly for me having children on the spectrum, it meant that I needed to really abandon everything I thought I knew about parenting. It meant that I had to discover and develop a bespoke style of parenting that fitted specifically the child that was in front of me rather than having a general sort of one size fits all approach because it absolutely didn't fit. And really, it's not to my credit that I think that I was quite resistant to that because of the way they don't fit the one size fits all. Then it's obviously because I'm not implementing the one size fits all with enough figure. So I need to I need to just retrain and double down on the one size fits all and it will work and the fact is it was never going to work. And it kind of I would say out of the two of us, I was you were the hair when it came to realizing that we needed to adapt and adopt a new parenting style and we need it to be fluid and I was very much the tortoise. There was a kind of rigidity of no this is how you do it. And you know, I think that with regard to parenting, having children on the autism spectrum has taught me and continues to teach me is teaching me to be a parent, I would otherwise never have been. And I think that had I never have been, I would have missed a lot. There's a lot of their growing up that I got by constantly having to reassess and reappraise and recognize who they are now. You know, not living on who they were last year or last week, even. You know, who are they now? Who are they today? And who do they need me to be today? Yeah. So you talked about the fact that it took you a little bit longer to describe yourself as the tortoise. So how was that then? Well, I made the tool to seem like St. Louis Hamilton. We got the diagnosis in 2009. Up until about 2012, I thought there's something wrong with these kids because they're really not getting my style of parenting. About 2012, I began to realize there was something wrong with me because I wasn't being the parent they needed me to be. And then I was all at sea. I think I took a little while to actually work out. If I've got autistic kids, I need to learn, it's not me teaching them and then learning how to be. It's actually me learning and I think that I think that when I kind of was humble enough to recognize that I didn't actually know, you know, sometimes you don't know what you don't know. But when you've got autistic children and they need you to be a parent, you have to learn what you don't know. You have to realize what you don't know and it is certainly in my case. I think I learned a lot from watching you, but I also learned a lot from realizing that I couldn't be you and I couldn't just be you the deeper voice that I actually had to change me. I couldn't just ape behavior that I saw it with someone else. I had to change the way my outlook and gosh, I would say that you're saying how long did it take to be? Well, the diagnosis arrived 13 years ago. And I consider myself still to be under construction, and a work in progress, because the dads that I was 5 years ago that they needed me to be 5 years ago isn't the dad they need me to be now. Because they've changed. Yeah. You talked a little bit there about you said this lovely phrase bespoke parenting. So just give me some examples of what you have bespoke. Bespoken. Okay, it's interesting because with, I was 16 year old, there was a rigidity of actions that isn't always, so it wasn't just a rigidity of thinking. So with Arlo, we have certain things. I am my face is a stress toy. I actually, I mean, I know I look like this, but you know, I think I would look about maybe 15 years younger, if not for all. All that has to excuse my face. And they always squeeze my face and there are certain things that we do. There are certain actions that we do. There are certain little dances we do. There are certain words that we say. I don't even understand your communication. I mean, you two are like a whole, you're like a double act. I know. It's all part of my being father to Arlo, is that we have loads of unspoken communication. That revolve around movement and actions and dances and laughing at the same thing that other people don't understand what's going on. I've had to learn that I've had to enter into our lives world and learn how that world works. On a practical thing, although loves to have drives, they want to have a drive once a day. It's part of a de stressor towards the end of the day. Some people read or watch TV or they're too young to have a drink, they go on a drive. They sit in the car and listening to music and we drive and 40 minutes later, half an hour, 40 minutes later, we arrive back home and they're in a different head space to the one they were when we left. And that's an important thing. So whatever the schedule will have my day. If I'm at home or if I'm coming home, I know I need to be out for that drive for Allah because that's an important part of parenting are there. And it's an interesting thing that to me, it's not even I don't even think of it as a chore or a stress. It's just part of being a dad. It's part of being their dad. Yeah. Because I actually think that, you know, speaking of bespoke parenting, I could quite probably be a rubbish dad to every other child in the world, but I've learned how to be the dad that the children I have need. Yeah. And that is bespoke. It is also humor. You have loads of humor, I would say, with Arlo. Yeah, yeah, we are a lot. Mostly at me, but often at all because Arlo is really funny at all that has learned to laugh at themselves in a way that they couldn't when they were younger. You know, in the early teens, they could not laugh at themselves because I think they felt such a level of low self worth and such a lack of confidence that to laugh with them at themselves would have been perceived to be laughing at them. And one of the ways that I can see that their confidence is growing and their belief that they have a place in the world is growing. Is for how much they laugh at themselves, how much of their humor is directed inwards. Yeah. I agree with you on that. Okay, so that's Arlo, who's our 16 year old. What about Tyler and katana is very different? What have you had to change very different? In your parenting of time and what's changed there for them? I think in my parenting style and what's changed is to listen to time. It's to really listen is to not be so ready to give advice, not be so ready to give an answer because even sometimes when ty says. I need to know what to do. I know that what will happen is that I'll be giving answers. And they'll be saying no, those aren't the answers. That's really bad advice. What I should be doing is this. So it's almost like they're using me as a sounding board. A classic example is when we run our way up to Holly oaks for their final audition. Time is one of the members of the cast of Holly oaks down. And it was their final audition and they were absolutely wrapped with nerves. And we're driving along the M1. And they're almost crying with us. And I thought this isn't good for them. It's really isn't good. And I said, you know what? I want you to know you don't have to do this. We can turn the car around and we can go back, and they said, so that's the worst thing you could have said. You can't say that. This is what you're supposed to say. I told you what they wanted to hear. And you know, it's a completely different kind of relationship to all that. And how we connect and how we relate is to share time together. Yes. And that's the wonderful thing we're tie. I mean, tiles say there's a box set that I've been watching and I really want you to watch it. So I'll sit and watch. And you know, maybe in the course of an hour, we'll say three or four sentences, but time. That's together time. That's valuable time. That's been our time. And you know, it'll be, I'll get a text with have a listen to this music or I'll send them some music. And tire listens and goes, yeah, I like this. I really like this. And then he'll put that on his playlist and that'll be and that will be a connection to the communication because what tie really loves. One of the things that I love is that feeling of being part of my heritage and my dad played this for me or my dad told me about this. And then what ty does then is to do the same for me. So I know you're like this. Have you heard of such and such? And it'll be somebody that I liked when I was 20 years old or something. And then we'll connect on that level, but it's a very, very different communication to our lows, but it's just as deep and it's just as valid, but it's entirely different. And if I was to switch and relate to time, like I do to other and relate to other, like I do to tie it, I would be completely disconnected from a couple of meltdowns going on there for sure. Yes. So you and I have run a parent support group. It has over a 180 parents, families, and we work with the families and with the children. That's been running for very long while. And over lockdown, you have run your weekly meeting online every single week for those parents. And I've been absolutely amazed and marvel at you and your consistency and the way that you love those parents is just wonderful. I love them too, by the way. But I love watching you talk to it to them. If there's parents of autistic children listening today or families of autistic children. What advice would you have? You know those parents when they join our group. What do they most need to hear? I think what most autistic superior will most parents of autistic children that join our group and need to hear is that they're not alone on this journey. I don't think that most people need parenting advice. Occasionally people will ask, look, this is a situation how would you approach this situation and ask the group? But generally, I mean, we're talking about super parents, parents who sacrifice everything and are willing to sacrifice everything. And by that, I'm not talking about money or material I'm talking about themselves. They're hopes aspirations, dreams, whatever they expected for themselves later on in life is just like that all of that gets put into a margin. That gets parked and everything is focused on the needs of their children. So what they need to hear generally is you're not alone on this journey. We've all walked this journey and so when you say something that to somebody else who isn't on this journey may sound outrageous about how you feel about what you're going through about how challenging or difficult or impossible you feel, how inadequate you feel to the task, it's fine to say it here because we've all felt it and we've all expressed it. And the other thing is having a space in your life where you can describe without having to explain, I think that so much energy is spent and wasted and exhausted by people feeling as though they have to explain their children. They have to explain their situation. They stand with a teacher. People say, wow, your child's your child's not that at all. Your child's like this. And they go, well, no, you don't know the whole picture. There is a different person at home to the one in school or the one not in school because they refuse to go into school. Or the one not sleeping because they're refused to go to bed or whatever. Just having a space where you can describe, but you don't have to explain because everybody else who is listening to you gets it. So is your advice that people link up with other parents? I think it's really important to do that. I think it's so important to do that because I think that in Albert Einstein said, if you measure the fish by how well it climbed a tree, you would think it was stupid. And quite often, all we get in terms of a metric for our own children is the yardstick of a kind of neurotypical world. And if the neurotypical world is the tree, our children may be the fastest swimmer in the ocean, but they're not going to climb the tree. So yes, I think it's really important to link up with other parents who are walking the same walk. Others who are in the same situation others who will be able to listen to you and not just sympathize and not just empathize but experientially understand. Yeah. No, I know for many of our families that we support theirs. There's quite a high percentage of their children and young people and we see this in the adults as well autistic adults might be struggling with their mental health, what have you learned about coming alongside our children in their mental health crises? Wow. I think I've learned more than anything that there's no quick fix. There are no easy answers and presents is everything. And that there's no guarantee that if you do a and B, you're going to get C that two and two are going to act a four. But what I do know is this that our children, even when they, we sometimes become The Rock against which they bash. And we feel bashed, but we're the only rocks they've got. And so the thing that I think is how important it is to be there and to listen and when possible to talk them down and when necessary to talk them up and also more than anything to also come alongside others so that we guard our own mental health. Because it's impossible to carry somebody if you're limping. You know, it's really so much harder. And yeah, our children's mental health is such a big deal. It's such a big deal. And it can turn on a sixpence. Everything can be going well. And then one thing, real or imagined, one thing can completely trans the picture. And so I think that most parents I know with autistic children live as such are a level of hyper vigilance that, if anything, yeah, do what you do and be there the way that you're there. But please remember your own mental health, remember your own need for support, remember your own need to be heard. Yeah, and to find voice. Just moving on to, I guess that thing of school and the workplace, how well or not well, our things set up for allowing our neurodivergent people to thrive. Wow. That's really interesting. It's an interesting question because the question in itself is it presupposes that any advanced society would recognize that there is more than one way of seeing the world and there is more than one way of thinking and therefore. An advanced society like ours would set things up that everybody, whatever that, not just the well-being of whether the neurological situation would be able to say, yeah, there's a space for me. There's a place for me. There's an opening for me. There's an acceptance of me. People are making the allowances I need made so that I can thrive, not just so that I can fit in and limp along, but so that I can thrive. But that doesn't really exist in any way like the number that it should. The number of employers who I think employers should be made to have a number of people who are on the autism spectrum, a number of people who have just had a neurodivergent. I think it's really important we get away from this cookie cutter one size fits all everyone has to look the same and replicate one another's strengths in order to fit in. And yeah, I suppose my answer so far suggests that I don't think that nearly enough is done. I don't think the nearly enough is being done. There's so much talent and there's so much ability there's so much intuition and knowledge and just being wasted being sidelined being overlooked being ignored. And if it wasn't overlooked, how much richer we'd be, the companies that actively seek out people on the spectrum because they have an attention to detail perhaps that others don't have or they have a skill set that I was specially interested, which means that they know their stuff almost as much as a PhD student would know just because they're taught themselves that kind of auto didactic skills that so many autistic people have, if only there was a recognition that these aren't just skills that come from a hobby. These are skills that become so deeply engraved. So knowledge based and so worthwhile that their valuable if we could find and be made to find ways to fully utilize the gifts and the talents that we have from people on the autism spectrum, the world would be a much richer place because so many of the things that enrich the modern world were devised or created developed or initiated by people on the autism spectrum. Yeah, which is exactly what all too kind of trying to do. That's absolutely you've just given their remit basically their davids. And we know that for Thailand, their workplace at hollyoaks has they've made all those kinds of adjustments four Thailand. So there is some good practice happening out there, isn't there, but there is. But probably not enough. And I do want to also about people even disclosing that they are artistic before they can even get to the needs that I might have. It is this sense of disclosure. How do we change perceptions out there, David? Gosh, I think that we change perceptions by I think drawing a line that delineates between our understanding of terminology and understanding that the term different and the term normal shouldn't actually be the opposite of one another. That your normal isn't my normal. And the your differences could complement my differences. The fact is that we've created an environment where two often people who are different in any way feel as though they have to underplay or deny their differences and create some kind of fake fake normal that fits with other people. And I don't think that that I don't think that that's right and I don't think it helps. But I can understand why. You know, somebody walked into a typical edition and started by saying, I'm autistic. They don't know they don't know the reaction they're going to get. They don't know whether the person sitting opposite is going to get, you know, yeah, fine. You almost want to go in and say, could you just tell me what you think is autistic looks like? Hear what they say and then

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