How to Parent Children With Disabilities // Importance of Emotional Awareness in Disabilities

So just a fair warning. Yeah, that's all right. Go to the rest of my family on standby. Perfect.

Perfect. Well, to get going in this conversation, I usually like to ask, you know, how did you come to find the grief recovery method certification? What was your initial interest in getting certified? And then maybe we'll go into kind of how that evolved, you know, and stuff like that.

But what led you to agree for covering the first place? Well, let me to it was as I said, I trained in COVID just at the very beginning of COVID when it's marked in the UK. And I had moved recently to Lincolnshire from Sussex down the South Coast. I didn't know anybody up here.

But to be closer to our son and Law, who had found somewhere that we could all live together but separately. And so there was an advert when we moved up here with the local hospice asking for volunteers for bereavement support. And I thought, you know what, that'd been really good way and something I've always been interested in. I love talking to people and I'll just go and have a go.

And the hospice was brilliant. But one thing that really frustrated me is the more I got into it, the more I realized that it's never just about the bereavement. It always comes with something else because as they unpack the bereavement, whatever the relationship was, something follows up behind. But the remit was very much we only could deal with the bereavement.

And I got frustrated by this and I thought, COVID, it was just before when things were quiet, having a read, came across the grief recovery method. And it was like everything, if I said just went tick, tick, tick, tick, tick, tick, your dad just kept hitting the nail on the head every single time that I felt was intuitive, that I had experienced not and it wasn't just about bereavement. It was around all sorts of losses and what I've witnessed in other people as well. Having a disability from birth, that was something that there was so many expectations and so much judgment, so much change, so much battles, all sorts of things that it really just resonated with me hugely.

And I seriously from reading the book, designing up was less than a week for my certification. That's how I was. Well, I'm so glad you found us, right? Thanks to the power of the internet.

That's really interesting. So, and let me stop here for a second because I think one of the things that's fascinating to me is the language, you know, the book is in 26, probably more than 26 languages now, right? And language is fascinating and the way that grief is either interwoven in a culture and in a language or not is kind of fascinating, right? And we really learn a lot as we translate this book into different languages.

And it's like, well, there's not a word for that or there's not really a word for this. And obviously we get it as an American and as a as a Brit, right? English is different, right? Or things are emphasized over there that aren't over here.

I couldn't believe the first time I heard how you guys said aluminum. I was like, And it's like, it's, it's, you know, I'm a simple man and it's one of my favorite things is just hearing the tweaks on how we say stuff, how you guys say stuff. But one of the things where I'm going with this is the term bereavement. I find that bereavement is used a lot more in the United Kingdom than in America, right?

So for here, most, most even when we're talking about death, really it's just the term is grief, right? Yes, professionally in hospice people, we use the term bereavement, but in common common language among regular people, I almost never heard bereavement growing up, right? So that being said, right? When you were looking and when you're in hospice, what you're really saying is the the the whole thrust of what you guys were being taught and what you were what you were working with in hospice with those folks was keep it within the lane of death and it is nothing else.

Is that correct? Yeah, it's like a free or post death. Yeah, that's it. No room for kind of bereavement slash grief anywhere else.

And that's the therapeutic version of it. That's the whole point. That's the therapeutic is how the funding because we have the NHS over here. So again, there's not a funding around that.

And so it's about, yeah, you're struggling with a bereavement. Yeah. And you and and and internally you're sitting there with a bunch of life experience and you're like this doesn't compute because there are other things in my life that certainly feel like bereavement slash grief. And and we're kind of negating or missing out on talking about any of that or looking at it through this lens.

Right? And it was dealing with the clients because you know, things for example that used to come up with abuse was around a strange meant was around dementia. You know, the loss around someone who's got a relative with dementia, carers of people who were really ill disabled things like parents. So the losses that were going for that and even disability, the difference between having been born with a disability and then having acquired a disability.

You know, I always say from my perspective, I would rather have been born with a disability because I didn't have to relearn things. Right. I've never known what it's like to run, you know, but there's been changes to my body that have happened that I never used to be in a wheelchair. I used to be able to walk and then from walking I was walking with calipers.

So, you know, they were metal things as a child. I actually got you say about language. South Africa used to live in South Africa. I was born and raised up until I was 13 in South Africa.

But for surgery, I came over here to have surgery to enable me to walk. Now, I'm really sure I'm three foot six when I stand up. And then when I came to live over here was 13, I will need you to, you know, we're going to put artificial legs on you so that you can be four foot two. So this is another change.

And I remember my mum when she, you know, she came over when I was five had my first surgeries. And when I did my training talking to you the training, this was something that absolutely smacked me was because when I was terrified, absolutely terrified. But my mum was on her own in London with a five year old in great almost real hospital. No one to be able to, the rest of the family were back in South Africa.

OK, and so she's on her own that time. There was no mobile phones where you could, you know, get the internet and contact. And I thought, wow, how absolutely difficult that must have been for her. But one thing she had a big fight about is like my arms.

I can't straighten my arms. And I don't have a proper elbow joint. And they went, oh, we can straighten, you know, to my mum, we can straighten her arms. And I was, what's the benefit?

I'll should be able to reach taller things. So she said, so thankfully, mum had the sense to ask what was, OK, what's the, there's always pros and cons. And they said, oh, she won't be able to feed herself. Excuse me?

Because I wouldn't have been able to bend my elbow enough. But it was all about how you had to fit in with society, you know, so that you, you could really fit in there. And then, first, I remember the very first time it's such a vivid, vivid memory. And when I did my certification and did my loss history graph, it suddenly really dawned on me how powerful this was.

Was that not only was I fearful of operations, phobic about needles, because you couldn't have your parents there at the time and things like that. When my very first time I walked, I used to had calipers. So I was very tiny with one of those role later, walking frames and the physio and I walked so slowly I was in so much pain. I've never done this before.

So it was a huge change for me. And I, the physio was literally, you know how you sit on your heels on the floor when you're sitting on your heels. She was sitting on a heels and then every so often she just shuffled her knees forward a bit and sit back again, because that's how slow I was. So I could sit on a lap.

And I remember her saying, and this was really profound that I wanted my mom, I really wanted my mom and that was all I wanted. And I said, if you can get to the end of that corridor, you will then you'll be able to see your mom. You'll be able to meet her. Now I got that if I don't get to the end of that corridor, which to me looked like five miles long.

Okay. And I completely switched off because I thought I'm never going to, I'm never going to make it. I'm never going to see my mom when I wanted her the most. Yeah.

And it was and I remember did get to the end of that corridor and I remember her seeing her, but there was a disappointment. And when I did my training with after I said to her, they even, what happened that day she went, oh, good grief. I mean, my parents divorced. And you know, no surprising then there was a whole lot of things again, a lot around how things had turned out for them with a child and their grief, which I've subsequently learned.

But months said she came out and I wasn't in the bed. So this bed had been beautifully made up so she thought the worst that I died. And just burst into tears and like absolutely was like huge. And it wasn't until we'd had this conversation that I'd realized what she'd gone through in that moment.

And I thought no, no, no, no, come and look. And she then went from crying with absolute desperation to crying with absolute joy to see a child that she never thought could walk again was actually taking the first steps at five years old. So it was such shows just transition and how we were both had we're in the same experience, but from totally different perspectives. Yep.

Yep. Wow. How powerful. And for those of you that are kind of maybe new to our work and our language, what we're talking about is we and kind of what Dino was saying about my father and kind of the concept and the lens in which he looked at grief and bereavement is that.

And by the way, when we first started this over 40 plus years ago, we also thought grief was all about death, right? He used to say he was he's embarrassed to say that, but that is the case. We just kind of went with what society was teaching at the time, which hey, grief is about death. And we kept like you kept intuitively feeling and understanding that other pains and emotional sadness from our lives were indeed grief as well.

Right? So what we kind of say is there are over 40 different life events over 40, okay? And probably more like 50 or 60. There are the better life events that produce feelings of grief, right?

So, shorthand, right? Divorce, right? That's the death of a relationship that is grief, job loss, loss of health, loss of trust in someone. And these losses are grief events the way we look at it and the way that it feels in our hearts.

So in the case of what Dino saying is there was grief, feelings of grief and bereavement that she maybe wasn't using that definitely not using that language and society wasn't using that language. But she had a lot of different feelings of grief around the hope dreams and expectations that she was kind of witnessing around her. So her kind of expectation is why I'm, you know, why am I not moving around like these other kids or her mom's expectation or hope or dream of what her daughter would be. These are all things that we are navigating separately, right?

And we're just we're feeling only what's happening in ourselves, right? And so Dina is grieving again, no one's calling at that at this point, but internally she is grieving for different things. Dina's mom is grieving for different things. And again, no one is addressing any of those topics.

So I just wanted to really quickly, before I turn it back over to you, Dina, I wanted to just briefly, because you may be listening and say, okay, well, Dina's telling a story about being born with this disability. How does this at all relate to grief? Well, grief is the underlying emotions going on for all of us, right? Dina's father.

I don't, you know, siblings, like everyone in the story had hope streams and expectations around who Dina was going to be, right? Even before she came out of the womb, right? People had hope streams and expectations about me before I came out of the womb, right? We all do this.

And when those hope streams and expectations are either not met or different than what we thought, that all is accumulates, that all accumulates unresolved emotional pain and loss. And if we don't know what to do with it, we end up just holding that back. So anyway, Dina, I want to thank that story just is incredible, right? I'm just imagining you as a little five year old girl, and again, language is important, and they're not explaining to you, and they're like, hey, you get to see your mom if you do this miraculous feat that you don't think you can do, and you're thinking, I'm not going to see my mom unless I do this.

She's over here seeing an empty bed and thinks you've died. I mean, I can't imagine. I really can't imagine. And so I appreciate you sharing that with us.

So please, I'd love to keep hearing your journey around all of these, you know, things. I don't know. This sort of where else to go from there. I think it is, as I said, from the training, that was a very powerful moment for me.

That was a big aha. It all becomes clear now. So subsequently, when Stephen and I had a child, that child had the same disability as Stephen, which is brittle bones. And so, and I'm sorry, Dina, not to not to cut you off, but for those that are listening to the podcast, not watching in video, can you explain like technically what your disability is?

Technically, my disability is such a complicated name, I think, even they can hide it last time. Basically, it's dwarfism. It's a form of dwarfism. Okay.

So it's sort of like I've got very short arms, very short legs. If you think they thought it was the little mind again, a whole load of from my mom's perspective, you know, did she because we living in Africa at the time, you know, she was in the middle of nowhere. It's and was not quite what you'd expect it to be and what we're used to in this day and eight, but it was very much about, oh, I've got morning sickness. Oh, well, here's a box with lots of different tablets that says, no, yeah, you are.

So they thought I might have been the little mind. So again, all that testing. And again, from a, you know, from parents perspective, what did I do wrong? I did.

I, that whole judgment that you get. Yep. And the guilt that comes with that, you know, and I know we have a look at that's a word that I do not like. Yes.

You know, and that taught me a lot again. This is from the grief recovery. That taught me a lot about guilt and looking at it in a different perspective. So when I, when Stephen and I had a child and Steve's got brittle bones, and that means that literally they can have a slight bump and fracture.

They can have a big fall in not fracture. They can literally bend down, pick up the ball for the dog. And they fractured a bone. No reasons whatsoever.

So normally legs. But most of the time. And so when we realized that pregnancy was very difficult, because it wasn't expected. And it was a lot of testing because they, the brittle bones can even present and you can fracture in the womb.

That's how easy. And so my husband by the time Steve, he was five, he'd had over 100 fractures. So they gave up counting. He'd had over 75 fractures.

We gave up counting. So again, it's every time you're going to hospital, every time, you know, there's fracture, you just drop everything you have to go. So it's constant change. It's constant.

How do you manage that? But one of the things that we had was Stephen, I was that we knew how we didn't want it to be. So, and this was something that I'd become even more acutely aware of with parents, with children with disabilities. And particularly, you know, where there's lots of surgeries, there's lots of medical procedures and think like that, you know, if you're really brave and you get through this operation, you can have a presence.

So you're rewarding and encouraging a child to suppress those emotions. You know, you think it's a motivator, but it's not. It's actually having a complete op. And we used to see it day in, day out whenever we, you know, we're in those situations.

And it felt wrong and it felt frustrating, but the one thing that because we'd experienced what it was like to have that vulnerability shut down, I think is one. I think another way of describing that. I think that's a really great way to articulate it. Absolutely.

And I think having that shut down, but I remember the one thing is power. You don't have control over what's happened to you. And I remember teaching an 18 months old that he was going to have surgery that would involve breaking his legs in several places to straighten the thigh bone. And we got this book and we described it and we were then it was Harry hippo had a poorly tapped me, you know, and think so we changed Harry hippo to become our son.

We can't change the surgery to be thing. We actually took a broken stick, a dried stick and this is what happens to your bones. I remember people really criticizing us for that, but it was about being honest and about being able to understand to handle it in a safe environment. And then when he did fracture and you know, he knew it was going to hurt to have that plaza put on and they have to turn you and they have to move you so you know it's going to happen.

But you tell us when you're ready and this is a timeframe because this blast is drawing and you've got it. So you just put the parameters right in place where you have to where it's necessity and you go right you tell us when you go and we go 123 and you knew what her. But we acknowledge that right. Oh, I am so glad that he had you guys as parents when we were at dinner, we spoke and I had to apologize because I just don't have a lot of knowledge in the in the world of disabilities, right.

And so. You know, the history experience. What's that? Who does unless you have contact and experience of it?

Yeah, yeah. And so I just I'm so grateful to have you as a representative of the grief recovery method where you can share this work with that community because again, there's so many things that we don't think about like even when you mentioned people who were born with the disability versus people who develop a disability at some point in their life, right. And so there's different of course, there's different feelings associated with that, right. But I felt so naive before you kind of painted that picture for me.

And so just to get this clear, you were born with your disabilities and with Steve was also born with his disability, abilities, brittle bones. Okay. So you guys both were learning to navigate life with disabilities right from the start. And you guys so you guys had quite a bit of experience on hey with our child, here's how we want to do it.

And this is before grief recovery. But you guys still had that awareness that we want to allow him to express himself emotionally versus, hey, you got to be strong. You got to be tough for this surgery. You get a toy.

And what the child hears is I cannot show. Oh, I did. In any fear. I did.

Okay. So it. So it evolved for you guys. It evolved for you guys as parents.

Yeah. The control was more thing. You know, you can you can in control when we move. We got to move you, but you're in control when we move you.

I think the acquired disability, Steve and I really saw that because of the fact that he, he and I ran a wheelchair basketball club, used to compete in the e for about, oh, nearly about 10, 15 years we were involved with the club. And people would come and people would go, those that had the disability or their life. They were just there because they wanted to play sport and off. Right.

Okay. So you go down to, you know, baseball, whatever it is, you just go. You want to go there. Dine a way to pick the most American sport.

You're like, you know, after you probably apple pie and then play baseball. Was both. Well, I'm super. I see I would, I would have thought football and soccer, but you know, that's what I want to.

But no, you guys are playing basketball. All right. I'm asking you. Okay.

And you could tell when someone you came in the door, almost instantly the mindset, the attitude. And that's what was going take, take, take when I ran the grief recovery method book was that people were coming because they had to prove something. They had to prove either that their body could still do it. If you think about ex-servicemen, okay.

You think people that have got spinal cord injuries. I can still do this. I can still. And there's this fight.

And then they have this fight and they go, yes, I can do it. And then they got to go on to the next thing. Let's go fight that. Let's go prove this.

And then they're having this battle with society. I remember once, I guess. Just when I was walking on my legs, getting into before I drove. And getting on to a bus to go to college and things like that.

And I remember all the bus drivers in the town were lovely. Okay. They were so nice. They knew that it just took me a little bit longer to get on and certain way.

And they knew if I was coming home late at night, they would drop me outside my door virtually. Okay. Regardless of the bus stop. So they were really nice people.

And I remember being on a bus stop once and someone said, do you want a hand getting on? I went, no, thanks. I'm absolutely fine because I have my way of doing it. And literally as I put my leg up and I swung my body forward.

I know where to lie. I had two hands, one on each buttock. All right. From behind.

And he shoved me. Just as I do. And you know, when you just go, excuse me. I'm nine, I'm 18, 19 years old and you've got your hands on my backside.

And apart from anything else, the momentum sent me flying. And it was before the bus drivers had the thing flying straight into the lap of the bus driver. Are you knowing your face down in? Let's put it a gentleman's lap.

Let's face it not a good place to be in public again. Thankfully, he really said he was going, oh, what do I do? And I'm going, I'm going to have to come up in a moment and I don't know where to put my face. But it's that absolute like the intention was right, but you didn't listen.

Yep. And he just caused this huge amount of embarrassment to the next degree getting off the bus. And some folks said to me, do you want to hand it? No fine, thank you very much, but thank you for asking.

And this wife just went, of course she don't want to hand. And I thought that's such a shame because somebody might have really wanted that. And this is where it gets with an acquired disability. People are trying to fix things.

And sometimes they don't just listen to the answer because they might do it in a different way. They might have their own way of doing it. It might take a little bit longer. Whatever it is, but just stop and listen.

So that's an example of how society can really influence what happens. Yeah, yeah, absolutely. Let's, if you don't mind, let's go back to the basketball league. Because I think that's really fascinating.

I think again, for listeners like myself who are learning a bunch of stuff they're not aware of. Correct me if I'm wrong, but I think what I heard you say is if you're born with a disability, right, you are kind of learning how to navigate with it your whole life. And coming to a level of acceptance of what is because that is just how it is for you from the start, from your Don of conscious memory on. It's like here's what I'm navigating.

And if you have a disability that that you receive somewhere in the middle of your life, you have a lot perhaps a lot of unfinished emotional business about what was. And so it's very difficult to to find acceptance around what is because you're constantly wanting to, to prove to yourself that that what was is still like attainable for you in some degree or level. And so is that kind of accurate? It is because you're experiencing those losses as a city.

I never had, I never knew what it was like to run. So I don't miss it. There's times I hope dreams and exhalation good. Yeah, but I actually have never experienced that what it feels like to run.

Right. And so when you, and it's also about my mom was very astute at telling me to trust my intuition again, something degree for every method is like banging in and it was just like, oh, yes, thank you. Intuicious. As a young child and even with our son, we had to teach him that you need to read people.

Some people when you've got a fracture, you fall and over in the playground because we can't be with you all the time. You need to tell people what they need to do when you're in agony. Wow. And that for a child, that is a very powerful thing to have to get them to do.

And that's an example where they do need to override their emotions. To focus, to enable them to make them safe and not cause further harm. So that's a very powerful thing. But when you think about someone who's acquired a disability, so if you're going from, you know, someone who's in a higher profession and they're absolute, it's a very fit, you know, you have to be a fit for, you know, something really physical.

And then you're, you're, you're literally, you've got spinal injury and you're never going to walk again. And you have no control of your body from the waist down. So apart from the huge amount of rehabilitation that you have to go on, you know, everything that you took for granted, like walking, like going upstairs, like even going to the Lou, you had to learn how to deal with all this or not be able to, because it's not the way that you used to be able to do that. That changes your relationships with people.

So partners suddenly become maybe carers, their financial losses, the home is suddenly not accessible, okay? Their friends suddenly don't know what to do. Their friends homes are not accessible. Work is not accessible.

The whole career change that needs with that. Your children, how you, you know, your children are seeing you going through all these things, you know, if you have children, what's changing there? It's a whole, the dynamics of everything is huge. Yeah, yeah.

Wow, I can only begin to imagine. This is so helpful. I think for me for sure, and hopefully everybody listening. So in terms of working with people, you via grief recovery.

Yeah. As I said earlier, right, Dynas, an amazing grief recovery specialist. I'm assuming that you work with anybody around any type of loss, but I'm assuming also you attract a, do you, do you work with quite a few people around grief around disabilities? I do with some people because sometimes they don't recognize it.

It takes that long time, because of its sense. So they will come with, and they don't recognize that that's grief. Right, right. Well, look at your story, right?

You came because you're working at a hospice, and you're like, hey, I just need the certification of grief recovery. And then somewhere along that certification, you're saying, oh, wow, I've been grieving the loss of, you know, the function of my body or the change in, or, you know, and also I'm grieving my relationship with mom and dad, because there was grief around how they treated me or what decisions they made. And, you know, and, but you're not equating that until 2020, right, around grief recovery. So like you're saying, I'm imagining you, like one of our goals with this podcast, right, is obviously getting this work out there and accessible for people in, in the community of people who have disabilities, right?

We want them to be able to work through the emotional pain. They've accumulated over the years because of society, because of, you know, actions that others have taken, because of the stuff that's just internal or decisions they've made around it. Like all of those things we're saying are living in people's hearts, and they are often negative feelings, right, affecting us negatively, and accumulating, you know, with every passing day. So I think one of our goals with this podcast is to get more people who have disabilities or where, hey, there's some emotional work that can be helpful for you.

Absolutely, because a lot of the battles, and you feel like you constantly battling, and it's other people's attitudes, it's other people's judgment, and one of the things that I learned the most, and it was really, you talk about, you know, you know, feeling free. This was a real, this is freedom to me. It's ownership, because so many, I was brought up, because you have to, you know, you have to fight your way to get the job that you want. You have to constantly prove who you are.

You have to do it at that. You have to wear legs so you can be as tall as people. You have to, it doesn't make sense. All this kind of thing, you have to be better and stronger and more determined.

But actually, sometimes you can't take responsibility for other people's attitudes. You can try and guide, you can try and assist, you can try and talk. But if someone has an attitude that they don't, and I think when people have lost a child, I think, you know, like your dad did, and people literally cross the street, because they can't cope with it. Yeah.

That's something I've experienced loads of time. People will literally, can't cope with that. You know, I'm a businesswoman as well. I've, you know, worked in corporate, worked in, you know, all sorts.

And thank, oh, what are you doing here? This is for business people. Yeah. I would break.

And how do you do? Shake my hand. But again, it's that space, because I've got short arms. They're having to come into that unspoken space where you're true, Dean.

Doesn't exist. So it's awkward for people as well. And that constant realizing what's your ownership and what's not your ownership is, oh, it's so freeing. It really does.

And that was one of the biggest lessons I learned in doing the grief recovery method. Was that I can't control things that I can't control. But I choose how I react to it. Yes.

And that brings an amazing inner in a piece. Amazing. Still brings frustration when you really need to do something. And there's a flight of stairs or something with no other access to the things.

Yeah. Yep. Absolutely. No, and that, that freedom and understanding accountability.

And that was, that was huge for me as well. Just like I think is just human beings, right? Just navigating life. Like we all feel at 100% of whatever our experience it is.

And, and, and, and, and, yeah. So I can really relate to kind of what you're saying about navigating. Just again, how understanding like when, when I need to be accountable, when it's other people and letting it go or forgiving or, you know, all these things so they don't stick to me, right? Because that can weigh us down and that can be very, very heavy.

And I imagine, right? And, you know, weighing you down with, with that emotional pain is, is, is even more debilitating, right? Just because you, you have some physical disabilities that you're already navigating. So to, to have on top, a top of that, a lifetime of emotional pain, right?

Because that's the feedback we get from grievers across the board is this, when we do the grief recovery method, when we do the completion work around the method, I feel lighter. I feel like boulders came off of my shoulders. Like that kind of feedback. And so I can't think of a group of people where that's maybe more important than people in the disability community, right?

To, to get that emotional weight off of their heart. Yeah, because that weight is holding them down and so they're fighting. This is what I mean about the fight. They're literally using every ounce of energy that they've got to try and push through barriers.

Right. And it, whether it's physical barriers, whether it's attitudinal barriers, whether it's judgment barriers, whether it's medical barriers, it doesn't matter. They're all barriers that you've got this weight of everything you're carrying along with you. And you're having a push through barriers that are really heavy.

I mean, we joke about, I say sometimes we joke, like, you know, the fire doors, a fire door and a wheelchair do not go together. Okay, because they're hard and they're tough. You need both arms for push a wheelchair, you know, and you know, if you've got a visual impairment, you know, some of the things that people just pop up in the middle of nowhere, you know, how does that help? And you know, this is again, why service dogs come so much into it.

But again, even going through, you know, service dogs, there's a whole load of loss that goes with that. So as much as they're enabling, experience loss when they have to retire, when they become unwell, and you know, there's so much even foster dogs, breeders. I really sat there, you know, I don't have an assistant dog, but I know people who do. And when I actually followed this cycle, just one dog going through.

And I mean, one of my friends had a dog and they had to give the dog up after two years because it had a spinal injury. And it wasn't detected until much later. And it was only because it wasn't being the service dog that it was expected to be. And it was a reason because it was so in pain.

And that, and I felt this was a beautiful dog, you know, absolutely lovely. And even I felt just as a friend of the friend, you know, I miss that dog, you know, I had to do a completion of that dog. Yep, yep, yep. You know, absolutely.

And as you know, Dina, we have the grief recovery handbook for pet loss, specifically because people minimize that loss so much. And that's regular family pets. That's, we're not even talking about service animals that dedicate their entire life to making your life easier and more accessible. And it's like, I can't imagine like you're saying what it's like going through the life cycle of these dogs is the service, you know, years of these dog and then saying goodbye and then getting a new one.

And, and yeah, I can't even imagine like the grief just produced from that one aspect for this individual, right? That's not even talking about. Yeah, go ahead. You can just a service dog, the relationship, a service dog that you have is so intense.

So intense because it's giving you freedom. It's literally changing your life. But you have to change your life as well for that dog to be able to care for it. So you're having to care for yourself and the dog now.

And there's, you know, there's all sorts of training that you have to go. So you've gone through all this and then suddenly that you're starting the cycle again. So it's a change. It's the same with me going from, you know, wearing my artificial legs to suddenly overnight.

I was in a wheelchair. You know, and it literally was that. Yeah. And it was like, what happened?

Where everything that you're used to, even how I drive had to change. You know, and there was a huge change. I've been driving for 22 years with artificial legs and suddenly I want to change. Really?

Yeah. You know, it was a real thing. Wow. This may, this may be a little bit in the weeds for newer listeners, but I think it's really important this part of the podcast for our specialists who are listening to kind of understand.

If you are working with someone around disabilities, how to navigate that? I'm selfishly asking for for my own kind of experience. So I can be more effective at helping people if someone comes to me with that type of a loss. Can you explain?

Well, real quickly for the listeners, if you know nothing about our work, one of the major actions of this work is a loss history graph where we get you familiar with the concept that there are other loss events in your life other than just death. Right. So we explain all the different 40 life events that could be grief. And then you're going to chart all those losses from your life to be.

It's an awareness exercise, right? And then you find one of those losses from your life, one of those grief events that you want to work on. And you do this thing called a relationship graph, then you do this thing called a completion letter. So that's, that's just a very high level view of a very abbreviated kind of actions of grief recovery.

But my question to you, Dina is, can you give us some of the work that you have done? So in other words, are you, when you, I would imagine, correct me if I'm wrong, but I imagine that you're doing work around your disability, you're doing yourself from some of the aspects of the pain when you're working on your relationship with your mom, when you're working on your relationship with your dad. Like, so in other words, but I'm assuming, and again, I'm not sure, but have you done a full on relationship graph and completion letter around the totality of your disability, or are you finding completeness when working on the guy that pushed you on the bus? And then you're doing grief recovery work around your mom or your dad, you know, like, or is it a combination of both, right?

How, how are you freeing yourself from the accumulation of this hurt and pain around your disability from a lifetime of living with it? I know that's a big question, but, but is that, does that make sense? The lost history graph is a real eye opener when working with clients, it is a real eye opener because it's your lost history graph. You know, from my, I can talk from my experience when I went through is like, yeah, there's my daughter conscious memory.

I was quite happy as a child, toppling around on my backside, just crawling on my butt, you know, I couldn't call on all those fine. That to me was fine until it got to a stage where I was with friends, and I then realized that there was the loss. Then it was the surgery, which we spoke about, and it's, you know, that was the hospital, my relationship with medical, that hospital, that physio, okay. That's where it becomes thing.

Then next it's unmoved, and then they want to put me an artificial legs. Why? I've just got, I'm, I'm in cannabis. Now you're telling me to walk again.

And then, all right, now at 14 I was told I couldn't have children because genetically it would be carried forward. At 14 years old, do I want to be thinking about that? No, but I was sat in this room with a meddy telling me, you can't have children. And she knows right.

At 14 I can't comprehend really what this means. Yeah, yeah, yeah. You know, this is really, I haven't got there in my life yet. And then you're going on and then there's school, there's college, and then, you know, work, oh, the land of work.

What I intended to do and what I really wanted to do, no, sorry, the tables are too high for you. We can't make it, it was a, just all the day. You know, since the Barry is there attitudes as well, but it's just all those changes and then, you know, getting married and then, you know, there's a normal things that happen in everybody's life and the different relationships that touch, whether it's family, whether it's people who become estranged. So the loss is sometimes when it's your body, you can look at the relationship you have with your body as a whole, because it's always doing it depends on the disability.

If there are sudden changes like going from my body, when I went from walking to not walking, that was a big loss for me, transitioning through that. And I eaked it out for nine months. You know, because going to one doctor to the other to the other, this is before I realized that it's a different, that's a relationship that doesn't come under body as a whole. Yeah, you know, and then it's sort of like driving my driving change and it's like, okay, where is my relationship with driving there?

That really went change and actually I love driving before I had a little sports steering wheel and it was. Yeah, I threw my cars around. I've been in a car with you, you still throw your cars around. I had the pleasure of going on a ride with Dyna and with Steve and she has the coolest like souped up modified Sprinter van.

I was impressed with your driving skills and that and that and that ride. Do you still have that Sprinter? Yes, I do. Yeah, the Sadies, but it's what they call a wheelchair accessible vehicle.

Again, for walking to now being in the chair, my whole vehicle I chose, I'm really upset about this. Yeah. I'm angry at the emotions about this is just like, seriously, you're having, I had to wait 18 months for that car because of all the different adaptations. Yeah, someone just, if I had something went wrong with that car, you know, got to be, I have an accident or something like that where it's written off.

I'm without a vehicle. And that those are the kind of things that again, amazing loss and lots of freedom. Everything else that happens. So real, real quick, just practically speaking, did you all of this relationship graph that you just walked us through?

Was that all a relationship graph like where you accumulated all that? No, so it came out in different parts of work throughout throughout other kind of. People, this is what I mean because your relationship is different. My relationship with my car is very important.

If I was just a passenger car, I would have a totally different relationship. So it is very unique to the individual. And that's why I said when you're working with people with disabilities, it's what's important to them. What's the, where's the energy?

Where's the energy? Where's the intensity of the relationship? And what is the loss? Is it just, you know, that's what determines how you work?

So you can't do one size fits all right, right? Because somebody like me where somebody like me where it's just like I've taken for granted the driving. I'm like, what's the big deal? It's a car, right?

But for you, perhaps that is your, that symbolizes freedom, right? That symbolizes hate. This is, this is, so that makes sense, right? Is we're always allowing the individual to rank the intensity for them.

You don't need or get a vote in it because it's, you, you can't understand. No, I can, I can go, how was that for you? Just to, if I want to check it in, I think like, you know, running around going for someone going, you know, again, the stigma of going into a wheelchair when you've acquired a disability. You know, I had a client who was in a really physical job, caring job, things like that.

You know, with children that were thought not to go into wheelchair because I would have given up, I would have given up. And it's actually, what are you giving up? And actually, what he was giving up, what he thought was the right thing. To do, you know, that's what people expect.

That's how I get about. But actually, what was stopping was preventing by him, not using wheelchair that the wheelchair enabled was the wheelchair enabled him just to go out and around the shops without being an excruciating agony without being really slow to play with his children again. You know, things were just in a different way, but because it's unfamiliar territory. Right.

You can't visualize. So you'd see that as this huge, huge, huge blockage, you know, that you've given up. If you don't walk, you've given up. But actually that wheelchair becomes your mobility.

Right. Right. Wow. Yeah.

This is really fascinating. One thing that I picked up from Russell Friedman, who's a pioneer of this work, and he used to always say unresolved grief, robbed, rob us of choice. Right. And one of the really catastrophic problems with unresolved grief is, is it rob us of choice.

Right. So that gentleman's choice of, hey, if we could help you resolve the unfinished pain around the disability and, you know, we can maybe help you. We can also view this new opportunity from a different perspective. Right.

And to give you an example from my life, I had, I have someone very close to me. And through infidelity, it broke this individual's heart and that grief around that infidelity and that marriage didn't allow this person to ever date another person again for as long as they lived. Right. And it was a very hurt from that past event, robbed them of choice and the opportunity to maybe fall in love again might maybe find a partner.

And this person's very close to me. It broke my heart just because I watched this person until the end of her life really be alone. And it wasn't a choice to be alone. Right.

It was unresolved grief. That wasn't allowing her the choice. And so I, this, this example you just gave, Dina is so incredible. Right.

Because for that person, what that disability. And so I was on to that idea of walking. And because there was there was obviously some unresolved grief around a bunch of stuff from that disability. And it was robbing them of the choice to even give it a shot to go and go into the wheelchair and maybe something actually is a benefit to that.

So, what a powerful example. You were challenging their beliefs, their attitudes, their knowledge that they had acquired through their whole, you know, life to date at that point. And it's, it's, you don't want to upset that because that's what we, that's the way we've been taught. That's the way we believe that's, you know, and it's very powerful.

It's extremely powerful. So when you're sitting there working with people and going, okay, what is it? And particularly we talk about hopes, dreams and expectations. And I love using the thing if I could watch you wave a magic wand and see you video, see you in a video, what would I see in here you do if you had that magic wand.

And sometimes that then highlights what's okay. Fair is the unresolved. Yeah. Yeah.

It's and that's quite I think because you don't, you just can't look beyond because you everything is a brick wall. And it is very different for so the people disability can be extremely isolating. And a very lonely place because there are so many labels associated with it. There's so much attitude.

There's so much beliefs around it that are misinformed, ill informed and people try to fix things, but actually, unfortunately, it's not one, you know, one cure fixes all it doesn't work like that. Right. Right. So one thing is a slightly, you know, we laugh about the, you know, things like the Paralympic Games.

Uh-huh. Ascifications. Again, one of my losses I was in team GB's, women, parallel, things for soul. Trained all through my, you know, the college years and literally it was two weeks before we went to Seoul, the world record for rest stroke training every day.

And two weeks before I went to Seoul, the Paralympic, but he went, no, we're not having breaststroke in this category of disability. Excuse me. That was it. And literally in a nutshell, the weekends that we traveled miles, you know, with my dad and everything else like that.

Absolutely, the relationships that I'd acquired. So, oh, that was a big, that was a big relationship graph there. Trust me. Yeah.

I'm going to imagine these very individual. Yep. And so you can't just, it's his with the clients guide me. They, yeah.

And the method enables them to do that. Yeah. Yeah, this work never seems to cease to amaze me. It's, it's like, we respect and we love specialists that have years and years of experience, right?

But there's really no secret like black belt level techniques. It's just really understanding the foundational fundamentals of this work. Right. It's like, hey, every griever grieves at 100% of what their relationship was for them.

Right. And we're all hurting over arts. And there's no ranking. There's no hierarchy.

There's, there's no, hey, my grief is worse than your grief. Right. It's just like we all have broken hearts around things. And we all need to identify what those are for us.

Right. And what the intensity is for us. And then as a facilitator of this work, you just have to help them do the work that they need to do. It's like what you just said.

It's like, I can't imagine how isolating a disability is for people. When you say that it can completely make sense. I don't have that frame of reference. But I do know that as a griever, grief is tremendously isolating to me, to me is just, you know, as a grieving the losses I've had.

And so I guess what I'm saying is it is, it is really incredible work because you can help so many people with so many different types of losses with the same format and method. Right. It's like we don't have a special program in format for someone grieving a disability versus someone that grief, that's grieving the death of a dog. The format and and and the method does not change for someone who's grieving retiring from a job after 55 years, right.

The framework is so wide and broad and so much focused on allowing the individual to find the intensity and the pain in the heart that it works no matter how you apply it to whatever, whatever loss. And that sounds crazy to people. You may think I'm completely crazy just listening to that, right. But look, Dynas nodding.

It's like I and the other thing that people don't understand is as much as you can see that I am unaware of all of the issues that Dynas has had growing growing up and living with the disability she had, believe it or not, I could still help someone with the grief recovery method, even even if I haven't had that life experience. Now I may not well, I shouldn't say I may. I'm definitely not going to be as effective as Dynas helping that person, but you know, again, you don't need to have every loss that your client has had to help change their life, right. You just have to go back to the foundational idea that no matter what, even if I have a similar loss to them, I have no idea where the pain is and where the energy is for them.

And I have to go into it with that mindset and help them find where the pain and they hurt and where the hopes and dreams and expectations weren't met and where the things they wish could have been different better or more in their life. And if I can just rely on those principles, I'm going to be able to add value and to add support and help to that individual, even if I have not lived in their shoes, right. So that's what I love about this work and, and again, if you're listening and you have a disability and you're like, Cole, you don't know what you're talking about. You have no idea like what it's like to live with this, with this disability.

You're right. I have no idea, right. And if you have the choice to work with Dynor me, I'd probably choose Dynor to work with, right. But the fact of the matter is, I don't know, I'm saying this is specialist because sometimes specialists have fear that I won't be able to help that person because I haven't had that loss.

And I want to tell you right now that that is not the case, right. As long as you rely on the fundamentals of this work and the concepts of this work, meaning, look, I've lost my father. And if I was working with someone else who lost their father, I still would say, I have no idea how this person feels because I didn't have the unique one of a kind relationship they had with their father. So I'm going to stay out of the way and I'm going to help them identify where the pain is for them because our work is going to be very different, right.

Dynor with her diagnosis, right. Like you said, it was very complex, but let's say someone else had the exact same complex diagnosis you have, right. And we know there are other people on this planet, dealing with the exact same thing you are, and their work is going to be different because their lives are different and they are different as people, right. And just if you can remember that you will always do well with this.

Because if you can always give that person the dignity and respect to know that they are one of a kind unique, there's nobody else like them on the planet or with their emotions and help them just do the work they need to do and be able to help them navigate that you're going to help. But it's not only that, Carl, it's not only the individuals, but you think about the program, the book, when children grieve, you know, disabled children. I had the number of parents that I come in contact with. He refuses to go to a physio, he refuses to go and get the treatment and there's this battle ensues between the parent and the child.

You know, what it's obvious he's going to do, but the child has just switched off, literally just gone, I don't want to deal with that physio anymore. So even if you're helping parents or medics and things like that, just to see things from a different perspective that will make such a difference. But I was also saying that the relationship, you know, it's not just specialist helping individuals that are grieving themselves indirectly can also be like with doing their helping children with loss program. That has been really powerful for parents and educate people adults dealing with children that are in these situations to help them understand the frustrations.

For example, I had one parents sitting again, my child won't go to physio and it's like critical that they have a physio, but this child's been over and over and over and over. But it's painful. They don't want to be doing this pain. They don't want to be skipping school.

They don't want to be missing, you know, whatever it's so much loss for that child as well. Yeah. And the parent, the parents not able to work, the parents not able to because they're constantly pulled out for work for medical appointments. And social life is very different, you know, being able to find someone that can care for them, especially as a high intensity person, you know, the special needs needing that everything really changes.

So it's not just one is it's the whole family and that's, you know, I said people separate because they can't cope with that. And then there's the loss that goes with that. I couldn't sustain it. I'm a bad person.

Yeah. Yeah. Yeah. And I really I'm glad you brought that up.

One of the things that really opened my eyes when I first came to the method, you know, 13, 14 years ago and I started working as a specialist, we we sent out. A kind of a solicitation, hey, would you write a review of grief recovery has been important for you and I got back this wonderful video from this mother and she has an autistic child. And she worked, she she talked about how powerful the method was on her grieving and completing her relationship with the hopes dreams and expectations on who she thought that child was going to be right. And that's what we all during during pregnancy and perhaps for many of us, even before that, you kind of dream of who your child will be and maybe what they'll do.

And and when when that doesn't happen, right, those those those hopes dreams and expectations don't just automatically get resolved and evaporate and go off and and allow you the presentness of that you need to to love and and make decisions based on who this child is. We find so this lady just you know again just talked about how helpful it was to complete her relationship with with the with the hopes dreams and expectations and who she thought that child was can be can be and so that opened her up to love and be there. And again, it doesn't make it easy a day in and day out for a parent navigating some of those challenges, but it certainly allowed her to free herself of a lot of stuff that she had been carrying around and she wouldn't have probably had that opportunity otherwise. Right.

This the other thing I wanted to comment on for you is like you were saying like I imagine different parents who who are navigating different things with children with disabilities. I'd imagine they they probably seek couples counseling. Maybe they go to therapy. And I think those things can be helpful.

But again, I wish that a lot more people parents and specifically in these situations would look at giving grief recovery a shot as well. Right. I think that that would be a huge benefit for these parents because I I know for a fact that therapy traditional therapy is not looking at it in the lens that we are and it is not focused on the completion work that we are right. And so again, my my advice for parents navigating these these challenges is to look at it through the lens of grief.

It you know that's. It's a previous prior to that, you know, when parents, if there's a genetic condition in a family or something like that and they are sitting there facing these challenges, these expectations of other people, they're grieving for. And I just sent you know, go to genetic counseling. Yeah, being there done that had the video.

So, you know, and it's, but it doesn't tell you how to deal with this, you know, this is not what I want for my child. I want to talk about having a client who was there was a disability diagnosed during pregnancy. And they were right, you're wrong, but it's not a place to judge was around do I terminate this pregnancy. I was about discovering what was their hopes dreams and expectations and it wasn't just about them.

It was about the father as well. And it was, you know, and you think that's not what counseling is about. It's about, yeah, but this taught this program taught them how to communicate with each other with true emotional honesty, not protecting each other. I don't know her feelings.

I don't want to his feelings and I know it's all right. Yeah, it just enables the cards to be laid bare without that. Horrableness that comes with judgment or trying to fix something. This wasn't something to be fixed.

This was something they needed to go through. And yeah, but you live with a disability. This isn't about me. This is about you.

It's really about you. I, you know, this isn't this is your decision to make, but get rid of the grief that and the emotions that are shackling you from making whatever decision you need to make. Yeah, yeah. And you know, it's something I wanted to mention earlier in our conversation.

And I'll bring it up now because you reminded me when you said this is about you. For all of us, but I imagine this is very, very true with people who are who are living with disabilities. Look, we could do a worldwide campaign to try and educate people who don't have physical disabilities on the right things to say the things to not do, you know, we can, we can go on a whole campaign to try and make it as comfortable as we can. But I think we all know that would be impossible.

I said, be like with that one, I'm not on this campaign. That's right. And that's what I'm trying to illustrate is the insanity of that because the reality is, is all of us navigating life. People are going to say the wrong thing.

They're going to do the wrong thing. They're going to hurt us. They're going to step on her toes. They're going to, they're going to, again, they're going to hurt us.

And it is our responsibility, ours to have the tools to navigate and free ourselves of that hurt, right? What is, is crazy as it sounds, right? Dina growing up in her body, navigating all the challenges she did. And me growing up in my body as a division one college athlete, who seemingly from the outside looking in, you know, kind of had everything needed to have a happy life.

Like again, we are both individually grieving 100% of the heartbreak that we each have. And each of our heartbreak is 100% and valid and needing to be addressed, right? And both of us needed tools to, to free ourselves of that pain. That was, that was, that was eating us up alive, right?

And so again, I just, I think that the, the message for grief recovery will always be that everyone, depending on their life experience is grieving at 100% of, of whatever their losses were. And we don't need to rank. We don't need to compare what we need to do is both develop the school skills and the tools to internally do the work we need to do to have our lives be happy and joyous, right? And that work, unfortunately, for some people hearing this, that work like is, is there and needs to be done by you.

No one can do it for you and no one and the world will never, ever, ever not step on your toes, not hurt you. And, and so we have to internally have these tools and free ourselves of these hurts. And it's, you never, it's never going to be in one size fits all because this was the power come back full circle about ownership. I have the choice.

And I will used to think that was just maturity. I don't know as you go through life and experience things and some of that is, but actually knowing that I have the choice on how I react. See me coming from however this or actually, you know what you're not you there is no talking to you and actually you're just sucking energy from me and I don't need that. I've got other things to be doing.

Absolutely. And I think, you know, what what I'm getting from you saying that I'm so glad you brought that up is the other thing that grief recovery and powers you to do is to make choices for yourself that don't need to satisfy anyone else. So yes, the world will hurt you. The world will step on your toes.

But if you are, if you're unresolved with that grief with that relationship, guess what? That's going to feel acceptable to you. And you may go back to that that situation or that individual or that group of people and feel like it's okay to have them continually hurt you and step on your toes. Right.

And after grief recovery, a lot of the time you'll get the clarity, hey, I'm going to make a new decision, which is I can't hang out that person because they're not helpful or I can't continue to date that person or I can't continue to allow that person to be in my life or to that of my family's life. And so yes, it gives us again, going going back to another thing we covered today was it gives you different choices. It reminds you that you always have choices where a lot of the time if you have unresolved grief around something or someone you don't think you have a choice. And you always do, right.

This is about personal accountability. It's not about going and making sure that that people around the bus stop don't ever do something as seemingly absurd as what they did to you there. Right. Even though we you're saying they're well intentioned, but look at this this insane situation they created for you, right.

And we're all like mortified for you. But those things are going to happen to all of us, right in our lives. And we have to know how to unpack that ourselves, right. Your Dynas not going to have everyone on that bus track her down and say, you know what, how do we make that right.

We are so sorry. I wish I would have handled that differently. Right. There's never apologies coming from those people.

And yet it is still Dynas responsibility to free ourselves from from the the emotions around that event or that series of events for other people in different situations. And it's the same is because like that person that did want to help and then got berated by his wife or offering to help. I really now since then that's made me go thank you very much. I'm fine.

No, thank you. Whatever. Thank you very much. But thank you for asking because I really appreciate and I want them to recognize that asking and listening was the right thing.

Yeah, so I always do that. It just again, that's my choice on how we react and that's changed how I react in situations. Yeah. Well, Dynas, one of the things that just what I just love about you is you your presence in a room is just undeniable.

You're your your your heart, your energy, your laughter, how you appro