76. Lindsey Douglas - From crisis to change: SEND, lived experience and the power of coproduction

In this powerful and deeply human conversation, Gill Phillips is joined by Lindsey Douglas – parent carer, advocate and DMI trainer at Midlands Partnership NHS Foundation Trust.

Lindsey speaks with honesty and warmth about family life with her son Grayson, who is autistic, has a severe learning disability and complex needs, and about the journey from crisis and exhaustion to greater understanding, support and hope. She shares what it means to look beyond behaviour, to ask what sits underneath it, and to recognise behaviour as communication.

The episode explores the value of curiosity, the importance of understanding unmet need, and the difference genuine lived experience can make when it is welcomed into the workforce in meaningful ways rather than as a tick-box exercise.

Gill and Lindsey also reflect on the award-winning #CYPWhoseShoes work with Midlands Partnership NHS Foundation Trust, the development of new Whose Shoes? resources around supporting children and young people, and specifically those with SEND and neurodivergence, and how Staffordshire partners used these conversations to help shape their SEND strategy.

This is a rich conversation about co-production, trust, family life, young carers, practical support, and the power of bringing parent carers and professionals together in ways that build understanding rather than blame.

🍋💡🍋 Lemon Lightbulbs from this episode 

💡 A child who seems like a “dream baby” may actually be missing early interaction and communication cues.

💡 Behaviour is not “bad behaviour” to be controlled. It is often communication of distress, pain or unmet need.

💡 Curiosity changes everything. Instead of asking “How do we stop this?”, ask “What is this telling us?”

💡 Diagnostic overshadowing is dangerous. Not everything is about neurodivergence; sometimes a child is simply in pain.

💡 Parent carers are often managing extreme risk at home without the training professionals receive.

💡 Lived experience can break down barriers fast, because trust grows when people feel truly understood.

💡 Co-production is not asking people to comment on a finished plan. It means shaping it together from the start.

💡 Whose Shoes? works because the cards create safer, less confrontational conversations about difficult issues.

💡 Supporting one child well means supporting the whole family, including siblings and young carers.

💡 Sometimes the bravest family decision is to choose peace over social expectations.

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Transcript

Gill Phillips  0:00  

My name is Gill Phillips, and I'm the creator of whose shoes, a popular approach to coproduction. I was named as an hHSJ100 Wild Card, and want to help give a voice to others talking about their experiences and ideas. I love chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of health care, and like to hear what other people think, or perhaps even contribute at some point, wild card who shoes is for you. So welcome to another episode of The Wild Card who shoes podcast. Regular listeners will have heard me talking about how much I've enjoyed the CYP who shoes project we've been doing over the last few years, working with Midlands partnership, NHS Foundation, trust, Lindsey , we've been developing new whose shoes resources to help people explore and understand what matters to children and families. We've looked at how we can join things up better to provide the care and support that young people need, and to help people focus on prevention and early intervention rather than crisis management. Well, we've just won an award for this work, and we're thrilled. 

MPFT is a huge NHS Trust and right at the top of the most recent league tables, so it's beyond exciting to be chosen as the winners for our work with children and families. We hope this will encourage other NHS Trusts to build on this work and spread the word around the country about the power of genuine CO production in the same way as we have done using whose shoes in maternity services in previous episodes of the podcast, I've spoken to various guests who are part of this work, passionate Lindsey  leaders, Lisa Edwards and Rachael crook, lived experience partner Yvonne Newbold and an array of amazing people I've met along the way. Check out the episodes with Stephen Russell, Benedict, Simcox, Aurora Thompson, and most recently, Amelia Wilcockson. Such wonderful people telling their stories and talking about how they've used their own experiences to help others. Well, in this context, it was inevitable that I would talk to today's fabulous guest, Lindsay Douglas, who has been a leading light of our project. Lindsay is a wonderful mother to her son, Grayson, who has very complex needs. She joined our project team with huge enthusiasm, very generously sharing her experience and wonderful advocacy work. So without more ado, I want to introduce you to this amazing woman, Lindsay Douglas, a very warm welcome, and thank you so much for joining me today. It will be hard to know how to spend this time together, as there is just so much we could talk about, but I'll leave that up to you. Where would you like to start?

Lindsey Douglas  3:18  

Well, I think that's very brave. Leaving it up to me, Gill because you know by now how I like to waffle. As a neurodivergent woman, you press go, and then I'll just go all day talking about all of the things that I'm so passionate about and never knowing when to stop.

Gill Phillips  3:34  

Yeah, you and I could talk forever and do yes. So we're gonna be a bit focused. Lindsay. Focus, yeah.

Lindsey Douglas3:42  

Focus, so, yeah, so, yeah. What a lovely introduction. Thank you, and it's an absolute honour to be here with you today. I have so much admiration for you as a woman, as a professional and all of the work that you do, as you said, I joined the whose shoes project when it was in full steam, and stumbled upon it really so I am married to a wonderful autistic man. His name is Joan, and we have two children. So Verona is our oldest, and she is 13, and then we have Grayson, who's 11, and Grayson is he's autistic. He has a severe learning disability. He has quite complex needs. He's non speaking. And we have a care package for Grayson so that he has two to one care during all waking hours. And he attends a highly specialist school setting, a wonderful setting that goes from age five up until age 19. So he's very settled there. But unfortunately, he hasn't always been as settled as he is today. So when Grayson was a baby, he seemed like at. Absolute dream, to be honest, he didn't really cry. He didn't make a fuss. If I left the room, he would go to anybody. He would be held by anybody. And he just seemed to take it all in his stride, really. And what I didn't know then, because I really knew quite little about autism and learning disability. I didn't really know any send families back then. He wasn't just a good baby. He was missing those early interaction skills that babies develop. Yeah, those early communication skills. They they just weren't there. And as he got a bit older and he became a toddler, we started to see lots of repetitive behaviors, lots of rigidity in the way that he would move and carry himself, little patterns of behavior that he became quite fixated on and the big red flag was a lack of development of speech, and he was diagnosed when he was three years old. We absolutely sailed through the diagnostic process. I hear lots of stories, particularly as time's gone on and waiting lists have got longer, of parents really having to battle for a diagnosis. But that wasn't the case with us. His needs were so profound that it was spotted quite quickly, and from the first referral, we had a diagnosis within only six months, and he was still such a delightful boy, very, very fixated in his own world. He liked to follow his own agenda. We started to see a lot of real sensory processing behaviors start to develop. So Grayson would constantly seek lots of feedback from his environment, lots of stimuli.

Gill Phillips  7:02  

What's that look like? Lindsay? What kind of things would that be?

Lindsey Douglas7:06  

So Grayson would constantly spin around on the spot. So lots of spinning, lots of tapping and making contact with hard surfaces around him, and he would, he would fixate on one spot of the wall, and he would constantly tap or knock at the wall. He would open the door just a jar and close it again and again and again. But he wasn't really harming anybody. He wasn't really dysregulated in himself when he was a toddler. Yeah, he started off in a mainstream school, and once he had his ehcp, his education health care plan, he moved to a specialist setting just after Easter of his reception year in school, and for a couple of years, everything seemed to be going really well. With that, he was accessing a highly personalized curriculum. He was supported where he was at. He wasn't reading or writing drawing, and he's still he's 11, and he's still not doing those things. We are still at sort of basic mark making stage. But he was happy and he was safe and he was nurtured. Unfortunately, when he turned six, he experienced quite a severe regression, and he had a series of tests. He had an MRI, and he had some genetic and metabolic tests completed, and so far, he's he's 11. Now, so far, we still don't have an answer as to why he regressed in such a huge way. We have had samples taken for trio whole genome sequencing, and we are still awaiting the results for those so whether something comes from that, I don't know, but unfortunately, when he started to experience this regression, we started to see a lot of behaviors of concern. Grayson would self injure. He would bite himself in his knees, he would bang his head against hard surfaces, really, really distressing. And the more this developed, the more difficult it became for his needs to be managed in school. And even though he was in a specialist setting, class sizes were on average eight with three or four members of staff, and that became unmanageable for him, so he had a managed move to a very highly specialist independent school where class sizes average four with four to six members. Staff. Every child has a one to one, every child in the school, and some have a two to one. So in many classes, there would be more staff than there are children. Yeah, and he's thriving there. But during that period of crisis as a family, we hit rock bottom right. He wasn't just injuring himself. He was lashing out at other people around him. His behaviors were all communication. We know that now. We've learned so much along the way, yes, and he was communicating that he was not okay. He was far from Okay, and in the absence of verbal speech, he was letting us know in the only way he knew how that he was not okay. And whilst we've never really found a cause for the regression of skills, there was a cause for his distress. And what we found through a series of tests was that he was impacted, and he has chronic overflow constipation, which is now managed through daily laxatives. But at that time, we didn't realize that his tummy was troubling him. He had some teeth that needed to come out, and he went on to have dental surgery. And he also had issues with his ears. He was diagnosed with a condition called otitis externa, and he was having recurring ear infections, but he wasn't actually exhibiting physical signs of ear infections. We weren't seeing any discharge redness around the ear. So for the longest time, he must have been suffering with these awful symptoms, and we didn't have that understanding of what he was going through. We weren't able to help troubleshoot how to make things better for him, because we didn't know what was wrong. All we knew was that he was in crisis, and he was hitting us, biting us, kicking us, punching us, wow, daily, and hurting himself, which is worse, which is so much worse. And at that point, I discovered our mutual friend, Yvonne

Gill Phillips  12:17  

Newbold, okay, yeah, brilliant. So we were

Lindsey Douglas12:21  

at breaking point, absolutely on our knees as a family. And in one of the online communities that I was part of, yvonne's online community was was was brought up, and I was signposted to her, to her resources. And Yvonne had this amazing suite of videos that she'd recorded, video webinars. And I watched all of those, and they really helped us see the, you know, the reasons behind the behaviors, the unmet needs. And it got us thinking with more curious approach. And rather than thinking, how can I manage this behavior, we started to explore what's behind this behavior. Because with all of the strategies to manage challenging behavior, behaviors of concern. It's about so much more than just managing what you're seeing. There's an unmet need behind that behavior, and it's so important to work out what that is, and to help support your child. Amazing.

Gill Phillips  13:39  

And I know Yvonne talks about detective work, doesn't she absolutely you've got to be your child's detective. And you can see that, you know, by being curious. And yeah, you know, poor Grayson was in so much pain, but you're basically seeing how he's displaying that. And why? Yeah, Curiosity is everything, isn't it? I think you know, in our wider work, just finding out what sits behind people and how they behave is is just so important.

Lindsey Douglas14:08  

Yeah, yeah, absolutely. So yvonne's online resources were wonderful in terms of reshaping approach, but sadly, we were still struggling. We were adapting our approach, taking on a lot of the learnings from yvonne's sessions, and we were still really struggling with behaviors at that time, and that's when we were referred for DMI support with Lindsey .

Gill Phillips  14:40  

You've got to explain what DMI is,

Lindsey Douglas14:44  

of course. So DMI stands for de escalation and management intervention, and it is a approach that is concerned with training, families. Parent carers in how to support their loved ones in the least restrictive possible way. The difference between what Yvonne trains and what DMI offers is Yvonne is producing some absolutely incredible resources that are one to many and as much she would absolutely love to go out and work with every single family in a very bespoke way. She would, she would adore to be able to do that. She she wouldn't have the capacity to be able to go out and do that. DMI community. DMI is, it's very, very bespoke. So we go out and we meet the family, and we look at the unique presentation, the unique challenges within that family, and we work, we work very closely with them and other professionals in their multidisciplinary team to create a bespoke lesson plan. So that's a bit of a spoiler, isn't it? It is a bit of a spoiler because I just gave it away that I, I went on to join that service, didn't I? Yes, so we had this support with with Grayson, and we, we ended up with a personalized, bespoke lesson plan, if you will. In terms of supporting Grayson with his challenges. And later on, I joined the trust myself, and I trained to become a DMI trainer. And I made that shift from sort of one one side of the system to to the other, really, I stepped into the system to help other families out of crisis, in the way that the service helped my family out of crisis.

Gill Phillips  16:50  

It's amazing, and I think that's been such a strong theme of a lot of the WHO shoes work. We've done the kind of dual perspective, or sometimes multi perspective, obviously fits with the whose shoes and looking at things from different perspectives. And people have talked about moving to the other side of the fence, and sometimes, yeah, equally, it can be a nurse, or, you know, someone with professional training who then ends up in just the the situation that they've been helping somebody else in, or someone who's diagnosed with a disease, who who is a doctor. So I think it's such a rich perspective, isn't it to be able to see both sides of the fence, because it's easy to just stand on one side and see what's wrong with the system, or expect people patients to act in different ways and not understand why it's difficult for them. Yeah, so I think your dual perspective Lindsay, is just so valuable.

Lindsey Douglas17:47  

Thank you. It also helps with breaking down barriers, yes, between families and professionals. When I go and visit a family and I'm supporting them with DMI strategies. I truly live in their world. Yes, I experience the challenges. And whilst every child and young person is different and is unique, there is a real sense of camaraderie. Yes, when I'm supporting families in DMI, and you can feel that the walls come down. You know, they may have had doors slammed in their faces historically from services, and they may have developed a sense of mistrust in many ways. So there is that sort of position of distrust as soon, as soon as you enter the home, really, and there is that sort of skepticism that you can, that you can make a real impact for them. And the more we talk, and the more I share from my own lived experience, you can feel those walls just come down and the session ends, you know, on a real positive note.

Gill Phillips  19:05  

Really, really powerful. Yeah, so lived experience and bringing more lived experience into the workforce, is it happening?

Lindsey Douglas19:15  

Enough? It's happening. It's definitely happening. I think, you know, and I feel very lucky to be part of Lindsey , because I genuinely feel like my lived experience is listened to, it's valued, and it is being incorporated into, you know, service redesign, Which is wonderful. I think there is a danger with lived experience, however, in that it can be it can be tokenistic, yeah, and it can become a bit of a tick box exercise.

Gill Phillips  19:55  

So can CO production? Can't it people like true CO production. But. But the real thing is different, isn't it? It is. It's much more in depth. It's much more inclusive.

Lindsey Douglas20:07  

Yeah, true CO production should be right from the offset as well. Exactly. It should never be a group of professionals that have produced a strategy, a project, and then had it signed off by somebody with lived experience, like they need to be involved from the outset for that to be true, CO production

Gill Phillips  20:31  

to actually shape it, rather than just respond to it. That's yeah, yeah, yeah. So lived experience, I don't know. It's 17 years now since I created whose shoes, and it was originally around me becoming passionate about more personalized care and things fitting around the person, rather than the person having to fit around all the different silo services and so on, and valuing lived experience in terms of how that feels for people and understanding that more so. I think different sectors, if you like, or obviously different organizations, are further ahead than than others, but I think there's progress, but there's also a lot of lip service and tokenism. So people like you, Lindsay, are sorting that because you're the real deal, and you're going out and you're breaking down those barriers, and it's obvious why. I mean, if I went out to those families, I might have, I haven't, but I might have all the professional training in the world, but I haven't. I haven't been in their shoes. I haven't lived in their world. Whereas you can, and immediately you've got credibility, and immediately you've got that trust and that relationship, because you 100% get it, rather than just something that's been learned on a training course or professional scheme of some sort?

Lindsey Douglas22:04  

Yeah, absolutely, absolutely, I definitely feel that it's valued at Lindsey , which is wonderful. One of the things that really warmed me about the WHO shoes work that we've been doing this the send edition, was how Staffordshire county council embraced it so warmly, which was wonderful to see, but in terms of an outcome of that, I was so so warmed by Staffordshire county council using the game to host a series of workshops with parent carers from all over the county, and use the learnings from those sessions to reshape their send strategy. That was such a huge bull's eye moment for me, in terms of not just valuing the voices that come from from the gameplay, but actually using them for something so significant and something that was really needed in the county.

Gill Phillips  23:09  

And really it was such an organic thing, because I think Stafford County Council were already working very much so on the revising their send strategy, and this work with Lindsey  was going along very much alongside it. And I think originally it was a case of they were interested, but perhaps it would be like when the resources were finished, because obviously we've been crowdsourcing and developing the resources, and then we basically put it to them. Look, we're developing these resources around all the different aspects of special educational needs, disability, neurodiversity, it's huge. We want to test them and improve them in as many different contexts as possible. And I think Amy duddy, obviously, was the amazing person from the Voice Project who sowed the original seed with Staffordshire county council. But then the conversations that we had with the send team, and they were really wanting to get it right. And as you say, it evolved into big events, weren't they, across the county, and with some really quite difficult moments in them, which are almost inevitable because they are inevitable because it's such a big service, and there's so much, so much difficulty for families in getting the support that they need, that it takes a brave leadership team to kind of open the can of worms and find out what people think. And they can't just press a magic button and make it all right, but by listening, really, really listening, I think, is the key. They're at least aware of the gap, you know, perhaps, between what what can be offered and what people actually need, and how organizations need to work together in a multi disciplinary way. Do. Genuinely, rather than refer on to somebody else or schools separate from the NHS or, Oh, well, that's social services. Or because that approach just isn't working. Is it the separateness?

Lindsey Douglas25:12  

No, no. And I think the format of whose shoes really helps break down those barriers between parent, carers and professionals, because the content that's on the game card sparks the conversations, and the conversations that then evolve. They're not in the format of, you know, a parent sort of saying, You're not doing this for my child, and this is going wrong. It's the scenarios on the cards are sparking those conversations, but then the topics that really need to get talked about organically get talked about in a much less confronting way,

Gill Phillips  25:56  

yes, yeah, you know, in a way that

Lindsey Douglas25:59  

doesn't result in conflict flying across tables. It's a respectful way to have a dialog about the issues faced in the system. Yeah, it's

Gill Phillips  26:10  

really interesting, because I think, you know, some people think of whose shoes is, and it obviously does, listening to the people, listening to the patients, listening to the families, to the carers and so on. But in my view, I mean, I think the reason that I originally, or certainly as it's evolved, created her shoes, is unless the professionals are excited to come to work and to choose to go into that job and to, you know, be the best that they can be at work, then it's not going to work. So that, I think the lemon light bulb moments, as we call them, when sometimes we had some big ones in Staffordshire, with those Staffordshire county council events, where sometimes the parents realize that it's not a commissioner being really difficult or obstructive, it's because of the system that they work in, and that they're people doing their best, and then they come together to see between them, you know, what the most important things are and how they can be achieved. I think that's exciting.

Lindsey Douglas27:13  

It's very needed as well, because in order to build the best outcomes for the children, you know, the children at the heart of this work, and the better relationships can be forged between parents and professionals, the better the outcome is going to be for the children. If everybody's working collaboratively and they have a shared vision, a shared goal, that's going to mean the better result for the child. So the format of whose shoes and how it opens up that dialog in a non confrontational manner is so important and so valuable for achieving those outcomes.

Gill Phillips  27:55  

Well, thanks, Leanne, it was brilliant. It was really brilliant when you came on board with the project. And my sort of side of the beach ball, if you like, is that when I first met Lisa Edwards and was invited to do this really exciting project, which itself grew in an organic way in terms of quite what topics we could cover, and depending on the energy of the teams and who wanted to be part of it, because I think top down doesn't work. So if Lisa said, we've got to do this first, and these people have got to come on board with it, then it was the opposite of that. It was drawing people in and intriguing in particular the mental health team, suddenly, well, I thought we were next, you know, and people start to really want to be part of of it. For the listeners, we've we've developed new whose shoes resources in a very crowd sourced way, and Lindsay's been part of that. We'll come on to that around joining things up generally, because children's services are complex, and for families, it can be overwhelming to know where to start and how to navigate the system. And then we did a module around children and young people's mental health. As I say, the mental health team at Lindsey  really came on board, and I think that was a bit of a turning point in the project. And then we naturally, sort of built on that in terms of a module around care experienced children. How do these things affect children if they're in the care system or leaving the care system? And then the final module, at least so far, this big module, I've found it quite daunting, really, around special educational needs. So when I got offered this opportunity, I immediately thought of my very good friend Yvonne Newbold. Yes, she's not in Staffordshire, she's down in Surrey, but in terms of having a partner in crime to help me do it in the right way, and to have. Have access to parent groups and so on. Yvonne and I did this project together from the beginning, so it's sort of come a little bit of a circle in terms of you already knew Yvonne and knew of her work and she'd helped you. How did you get involved in Lindsey , who shoes?

Lindsey Douglas30:18  

So I was already working at that point as a DMI trainer, and I was still part of yvonne's online community, and I knew that Yvonne wasn't local to the area, and I was scrolling through my social media one afternoon, and I sort of, you know, skim red as you do when you're just scrolling, you just sort of catch odd little phrases in your peripheral vision, don't you? And I spotted the hashtag Lindsey , and it was on yvonne's online community group, and it stopped me in my tracks, and I thought, Oh, I know Yvonne is not local to Stafford. I wonder what she's mentioning about the trust that I work for. And it was she was promoting the care experienced event all right at Lindsey , and it was coming up the following week. And I thought, Oh, my word. I would love to meet her in person, and she's going to be at an event that's 10 minutes from where I live. So I spoke to my colleague, Jim, and I said, Oh, do you have anything on on this particular day? I think this work. It looks really interesting. It could be really relevant to what we do. And I absolutely have to meet this lady, Yvonne Newbold, and he had a free day, and he said, Yep, let's go along. So we came. We were blown away by whose shoes. We loved playing the game. We actually sat at Amy duddy's table. So we were on the table, that she was facilitating the game, and yeah, we both just fell in love with the approach. And at the end, after we did our pledges, it was announced that the next and final project was going to be send a neurodivergence, and we just looked at each other and said, We have to get involved with that. We have to so we found lease. At the end of the session, we introduced ourselves and said, you know, we'd love to help. We're happy to help, of course. Then we were warmly welcomed onto the core project team where we met monthly. We got involved in crowdsourcing. I that's actually been my favorite part of the whole process since I really became involved, was the crowdsourcing element going out to the communities that I'm in. I went along to the National Autistic Society Stafford branch. They have a autism hour at a local soft play center, and it was Tori and I from Tori from the participation team, been amazing, too. She's wonderful. She's so beautiful, wonderful. We went along together. We set up a table, and we had parents that were there with with their children coming and talking to us about local services, and that we compiled all of that, and that went into the crowd sourcing. Where else did I crowd source?

Gill Phillips  33:11  

You seem to be everywhere.

Unknown Speaker  33:15  

I do. Don't I? You did

Gill Phillips  33:17  

seem to be everywhere. That was my perception. What is she doing? Where is she now?

Lindsey Douglas33:21  

So whose shoes might have become a little bit of an ADHD hyper focused topic for me

Speaker 2  33:27  

for a period. I don't know if you guessed that's hilarious, but

Lindsey Douglas33:32  

yes, I was, I was everywhere. I was very, very excited about the crowd sourcing work and yeah, so I was at soft place centers. I was at coffee mornings for parent carers. I went to the head teacher of the school that my children went to, and my colleague Jim and I, we worked with the participation team on a staff event as well, where we had some crowdsourcing from Speech and Language Therapists, learning disability nurses. It was just so wonderful, and compiling all of that with everybody else's work on the Padlet that we used. It was, yeah, it was just really rich, and that was what I enjoyed the most. It was having those really rich, diverse conversations from multiple perspectives that all fed into what became the finished product.

Gill Phillips  34:24  

Really? Yeah, that's really interesting to hear. And you were definitely the star of the Padlet, so you were adding lots and lots of things, so just so that people understand what we're talking about, there's a tool called Padlet, which I find brilliant, and I pretty much use it as a whose shoes website, so I've got my own. It's called overview of whose shoes. And I just find being able to just quickly drop bits and pieces as they happen, like a little video or a clip or just an announcement or someone sharing photos or whatever it is. It's a great place. Lisa and I call it our. Squirrel collecting place. So it just brings in nuggets. And in terms of how I kind of crowd source things for whose shoes I say, if it's a link to a mega research project, I probably am not going to use it really. If it's a really vibrant quote from a person, whatever perspective that might be. So that was what was so brilliant about you going out and actually talking to people, to the head teacher, to the parents, to all the various people, the staff that you spoke to, and collecting kind of nuggets of, I don't know, just ideas, comments, what's going right in particular, I'm actually going along on Friday in Birmingham to the learning from excellence Conference, which I'm very excited about. I haven't been to before, but I do think that finding people who are doing things that work is a much more exciting way of approaching things than moaning constantly about all the things that are wrong, because it uplifts people and it gives them ideas that they can share. And the whole project, really, I think we've ended up with 300 new scenarios and 50 poems, or just under 50 poems. I think it is and it's interesting in terms of how bespoke things should be, because I know Nicola now from the Youth Justice team, is talking about perhaps us doing an extra little module about youth justice, and I think it will really, really work, but I'd like to think there'll be a wealth of quite relevant scenarios from what we've already done, because at the end of the day, it's all about people and listening and treating people with respect and looking, as you've said so eloquently, Lindsay, for the reasons behind the behavior, rather than just this is what's happening. How do we deal with it? How do we manage it? Yeah, absolutely. So that will be interesting to explore. Yeah, perhaps next year.

Lindsey Douglas37:02  

Yes, I think you've been really, really busy, and you definitely deserve a well earned rest.

Gill Phillips  37:10  

Yeah, we'll see so absolutely extraordinary. And you know some of these people we've mentioned along the way, Tori from the Mental Health participation team. I just love the initiative people have got. They're so passionate and enthusiastic, and I know she's designed and sort of run past me, and obviously like working together in terms of it being my my business, really whose shoes, the potential of lesson plans in schools around mental health actually, to use with different ages of children. And Tori is a teacher by background, so that's really exciting. Yes, you know the way that she's developed them, and the insight and the knowledge that she's got. And then other people are talking about perhaps using whose shoes with leadership groups in schools, yes, to get them thinking more about what might be going on for the children. And I mean, I know we've got some spin off work that we've done in the past with Kath Evans, particularly around young carers, and obviously your daughter. You know, how does it feel to be in a family where a sibling's got such complex needs, and your daughter just sounds like a superstar. I've seen some of the things that you've posted on just occasionally on social media, yeah, and I'm sure she'll end up the most amazing adult with the richness of what your family's brought to her.

Lindsey Douglas38:36  

Thank you. She is remarkable. You know, I appreciate my bias in that, but bias aside, she is a very, very resilient young lady, and she is a young lady now. She's just turned 13, and she kind of knows no difference, or she did know no difference, but I guess she's getting a little bit older now, and when she's spending time in other people's houses, she's getting a taste for what life might be like, where you can just go and get a glass of water and not worry about putting your glass down on the coffee table, right? Yes, yeah, without that being thrown across the room or the level of hyper vigilance that everybody in the family has to have when you're constantly dynamically risk assessing it must be exhausting for a child. I didn't grow up like that when I was a child that wasn't my experience of family life. I grew up with a brother, but neither of us had additional needs, and I can't imagine being a child and having to have the level of hyper vigilance that my daughter has to have, but she just gets on with it. And she gets on with it with she. She reminds me of the analogy of the graceful Swan, the graceful Swan that's furiously pedaling under the surface, but looks like they have it all together above that water line, extraordinary. And she she does. She just she gets on with it when I'm driving home from school with Grayson because she she goes to high school and she she walks home, so she's usually home before I get back from Grayson's school with him. And if it's a dry day, we'll go straight to the garden, because Grayson loves being outside. But if it's raining and we need to come straight into the house, I'll give her a call, and all I have to say is, I'm five minutes away with Grayson, and we're going to need to come straight inside. She knows exactly what she needs to do. Anything that's kind of around, she needs to move the remote control into the box. She knows that any mugs or any cups need to be away, out of his reach, and she just gets on with doing that. She has that brief half an hour when she gets back from school where she can just be a normal kid, and she can just get a snack and get a drink and sit and just relax. But then when he's home, that hyper vigilance really has to kick back in, and she just knows and gets on with it. But we've worked very hard, and we fought very hard to have an infrastructure of services around not only Grayson, but also Verona, so that we have pas for Grayson. He does go to an overnight short breaks center once a month for two nights, and we absolutely use that time to pour everything into Verona, because for two days a month, he's away at his sleepover. We call it his sleepover, and he loves going, but that's her time, then for her to say, you know, actually, Munt dad, I'd like to go bowling, because we can never go bowling, no. Or, you know, she can have a friends round for sleepover, because she can never do that usually. So that's really important. But yeah, it's the work around young carers is so, so valuable, because they really are the unsung heroes of the whole piece, siblings.

Gill Phillips  42:25  

I'm glad you've talked about that, because I think we hadn't really talked, or hadn't talked enough about the needs of the whole family and how the more support can be geared up for the whole family, rather than just picking out one person or one condition, as if that's in isolation, that's yeah, so important,

Lindsey Douglas42:46  

it really is. And I see this professionally with the work that I do with families in DMI support. When a referral comes into the DMI team, families are struggling. They're feeling lost, they're feeling overwhelmed, and a burnt out Munt or burnt out dad is not going to be at their level best position, yeah, yeah, to support their child. Come across parent carers every day, who absolutely adore their children, but they're exhausted. Yes, they're fighting so many battles, yeah, and they just want the best for their children. They want the best quality of life possible for their children, but there are so many barriers and so many battles to fight, and

Gill Phillips  43:45  

that's where working with Yvonne, I've learned so much. And she talks about the ninja parents and blame and shame and people you know, all of us, perhaps society, see an episode of behavior or see something that really we don't understand, but how easy it is to judge other people rather than knowing what's going on in your lives. And thanks for sharing Lindsay so generously. I think things like that kind of cameo, really, of Verona at home, and the glasses, and just the day to day things, I think that's incredibly impactful in terms of sharing that day to day insight alongside the big, more obvious condition based things that people might think they know more about. Or, you know, it's how it affects families, isn't it, and what the day to day reality is like, and what you can do about that, and what support might really, really help. Yeah, I

Lindsey Douglas44:42  

mean, Christmas is a really good example of what we've been talking about. So Verona is a bit older now, and as she's gotten older, things have gotten easier, she's got, you know, much better understanding of why things are different for us. But Christmas is a real interesting. Time of year for families like mine. And you know, we have two Christmas trees. We have a free standing Christmas tree, and then we have a half Christmas tree that is wall mountable. And every year we take a decision as to whether or not it's a free standing tree year or not, based on how settled Grayson is, yes, if he's had a lot of periods of dysregulation in the run up to Christmas, we're not brave enough to put that tree up. It's going to go flying across the room numerous times a day if he's not in that good place in himself. For the past three Christmases, we've had the freestanding tree, and that's, you know, I really do see that as a as a mark of success and achievement. You know, we've achieved that as a family. It is safe enough to put the tree up, but there have been years where it's not been safe to have a Christmas tree up. And, you know, Christmas is a very overstimulating, overwhelming day, yes, for him, when he just wants you know, family members will say, What would Grayson like for Christmas? What Grayson would like for Christmas is for it to be the same as every other day, because there is safety in the consistency of the day's activities for him and sticking to routine. But that's really hard on Verona, because she's also a child and she wants the magic of Christmas so striking that balance in the family is no mean feat.

Gill Phillips  46:36  

Yes, Christmas, I think, is a tricky time for lots of families and children with different needs, but when they're so different, I think what you've said there about the tree and the choice of Christmas tree just so symbolic. And I just like to say congratulations for getting things into a place where consistently you're able to choose that tree, because that must be just huge. That's been amazing.

Lindsey Douglas47:06  

It really is. It's it's all of the excitement of putting up your tree, but then it's stopping and reflecting and thinking another year goes by and another year it's safe to put this tree up in the room and not have that wall mounted half tree that's hung high above his reach. And I do regard it as as an achievement. I can say that. Yeah. So, yeah, it just adds to the Christmas magic. But then the Christmas magic, it's it looks very different. Looks really different in our house. So I like to say that every year we've learned something to make it a little bit better than we did the previous year, and it's really been a journey. So we started off when when Grayson was really little, and everything was traditional and it was all in accordance with social norms, and it was just awful for him. He was so overwhelmed. He didn't like lots of presents being around him because they're all unfamiliar objects in his space, and that was really unsettling for him. He didn't like the presents being wrapped because he didn't know what they were, you know, it was just this mysterious thing. So we transitioned over the years. And I think for the first couple of years, we thought, okay, these are too many presents. You feel the pressure, the social pressure, to have big piles of presents on Christmas morning. And we thought, no, okay, let's remove that pressure, and let's reduce the present pile. So we did that, and we would still find that Christmas Day was quite dysregulated. And so we decided, okay, next year we're not going to wrap them. So we did that the following year. And then every year we've done something that's made it a little bit more peaceful than the previous year. And now what we do is there are very few presents. He's not presented with any of his presents. We have a little sensory basket. His few little presents go in the basket, and they just stay in the corner of the room, and he can just explore them on his terms. And I think with Christmas and neurodivergence, we prioritize peace over tradition.

Gill Phillips  49:25  

And that takes some confidence, doesn't it as a family, and it really, yeah, it really does, yeah, the social pressure, the social norms, yeah.

Lindsey Douglas49:34  

And it's also saying to extended family that we're shutting our door and we are hunkering down over Christmas. We're not, you know, you're not welcome to come round with the best will in the world and with all of the love that we have for you. This is his safe space, and our door is shut over Christmas, and it's Yeah, and it's having the confidence to do that. And. The assertiveness to think, no, we we have to put our little family first.

Gill Phillips  50:06  

Well, that's just so powerful. And I think it brings us back to DMI de escalation and management intervention that you were talking about earlier, Lindsay, and I can see you putting those techniques into practice powerfully in your own home. I'm just thinking. I'm sure there are further practical examples where anyone who's perhaps struggling themselves at the moment might be able to learn some tips. So if it's okay, can we return to DMI just briefly, and perhaps you tell us a little bit more about

Lindsey Douglas50:40  

it, sure. So DMI is a model that is used across the trust at Lindsey . It was developed in house, and it is a model for supporting patients with learning disabilities and or mental health conditions in who present with behaviors of concern. So the fundamentals of DMI is in de escalation. It's the first part of the acronym. It's the de escalation. So what we focus on primarily is working out, essentially, people's needs. It's looking at behavior as a form of communication and trying to understand what's underpinning behaviors of concern. So across the trust, our staff members are trained in DMI, but more recently, it has developed into a community service as well. So when we have a staff training course, that training group will learn the whole syllabus of DMI because they're working with patients across the trust who have a range of needs. Nobody was offering this kind of training to parent carers and parent carers, we really are on the front line of managing risks in the family, home and out in the community. So for example, I'll send my son to school, and he goes to a specialist school, and the staff there are all trained in managing behaviors of concern. They're trained in de escalation. They're trained in breakaways disengagement, so that, for example, if a child that they have in class pulls the hair, they're taught how to break away from that in the safest, least restrictive way. But parent carers are at home, doing the best they can with what they know, and this support was not available to them. Yvonne's resources were available to parent carers, and that's amazing, and so much of what we cover in the de escalation side of DMI is cover. You find a lot of similarities in what's in yvonne's resources. But if you're at home looking after your child who has a severe learning disability, whose autistic, whose in meltdown, they're in sensory overload, and they start to physically attack you. You're well beyond the point of non physical de escalation, and you really need to support your child to make that environment more safe for you, for them, for siblings, this was the environment. That I was living in with my family before I joined the trust. So when my DMI referral went in to come and support us with these behaviors, the primary challenge that we were having at that time was with biting. So Grayson was biting himself, but he was biting other people as well. We had an incident where my husband, Grayson stard was bitten in the ear, and he had to go off to a and e and have a tetanus shot goodness, and he had to have his ear glued. Parents, families are living in this environment up and down the country, and there was no training of this kind for them. So Lindsey  started a community of DMI, and the difference between what they were doing with staff training was that it was very person centered, very bespoke. So we'll go out to a family. And first of all, the first thing that we focus on is we look at what a good day looks like for the child, young person. And we want to gain an understanding of what their positive baseline looks like. Whose around? What. Are they doing? How are they communicating? Are they listening to music? Do they like quiet? Do they like being outside, or do they like being at home with their creature comforts all around them? So we work out what, what good looks like, so that when we first start looking at De escalation strategies, we've got that tool kit, if you will, that grab bag of good fresh in our minds and that that comes in really handy when a child, young person, starts to move away from their positive baseline, and they start showing early signs of dysregulation. Because very quickly you can think, for example, okay, I know my child is happiest when they're in the garden. I'm starting to see some early signs of dysregulation. Let's quickly get coats on, get outside in the garden and see if we can get back to that positive place. So it starts with that kind of mindset, really. And then if that doesn't work, it's time to adopt what we call a parent detective approach, which is very much in line with what Yvonne talks about in her resources. And it's rooted in positive behavior support, really. So it's thinking about behaviors as all having a function. And so it's looking at what function that serves a personal example that I always talk about in training is my son, and I've talked before about him being very, very sensory seeking. So he would run at a wall, and he would hit the wall with force, with so much force and with such repetition, that he would cause bleeding to his knuckles bruising around his wrist. It was really distressing, and we were able to identify that that had a sensory function for him. He needed that feedback. So what we started to do is I bought one of those sparring myths that are used in boxing and velcros to the back of my hand. And as soon as Grayson would start moving towards the wall, and he would start hitting at the wall, I would strap back to the back of my hand, and I would offer that to him, and I would start modeling myself. I would hit into the sparring pad so that he could see this is an alternative. It meets the same need for you, but it's a safer way of doing it, and gradually, over time, I could successfully redirect him to the sparring mitt instead of the wall. So clever and so practical, yeah. And sometimes the redirection strategies are are so so simple, and they make such sense, but the key is identifying the function that the behavior serves. Because if we were to just say, I need you to stop doing that. Stop doing that, the need doesn't go anywhere. You've stopped the behavior, but they still have that need. They still need to have that function met for them. Yeah, incredible. And if you stop them from meeting that need in one way, then they're just going to find other ways to meet that same need, and the new way might be even more harmful than what they were doing in the first place.

Gill Phillips  58:20  

So to find the safe method of achieving that same need. Absolutely. What I love about it, Linds is it's simple, isn't it? It's because people think, you know, I'm at my wit's end. I don't know what to do. And I mean, obviously these things are very complex, and it's not going to be magically right overnight, but as a kind of thinking tool to understand the behavior and find out why, and then, as you've described, it an actual need, and how you can meet that need, rather than focus on the behavior itself and stopping it because it's dangerous or yeah, oh, thank you so much for telling us.

Lindsey Douglas58:56  

And another thing that we focus on within training as well is really looking at what could be behind the behavior that has nothing to do with neurodivergence. Yes, like a sore ear. Yes, absolutely that. So there is so much diagnostic overshadowing, where everything is looked at through the lens of the neurodivergence, whereas, in the case of my son, Grayson, what was driving a lot of his behaviors was physical pain and where there are limitations with verbal language that can be overlooked, an episode of behavior might be absolutely nothing to do with the send needs, but the child might just have a stomach ache or a headache. They might have had a nightmare that scared them, and they can't tell you that, so it's coming out in behavior, so it's really ruling out the physical and tangible needs.

Gill Phillips  59:58  

So yeah, thanks. That's such a valuable addition. Because, I mean, I've learned, I've learned so much from it. I mean, I've heard you talking a bit before about what you do. I think the examples are just so insightful. You know, for me, examples always bring it alive, yeah, yeah, rather than just hearing a theory of an approach or something. So wow, I around. It's been an amazing conversation. Lindsay, I knew we'd just end up just chatting and exploring all sorts of that super interesting things. And as say, I couldn't thank you more for your generosity and sharing, what what you've learned and what your experiences are, what final either lemon light bulbs or messages would you have for anybody listening?

Lindsey  Douglas1:00:47  

I would say that if you're in a position where you are hiring for roles within the send a neurodivergent space, hire the parent carer, hire the adult sibling, hire the people with genuine, authentic, lived experience, because you can learn so much from them, brilliant.

Gill Phillips  1:01:10  

So let's hope that that's the case, and that this has made some more ripples, because I love ripples in terms of this journey that we're all on. So thank you very much. Lindsay Douglas, wishing you well, and thank you so much. 

Thank you for having me. Gill it's been a pleasure. Thank you so much for listening. If you enjoyed this episode, it would be fantastic if you would leave a review and a rating, as well as recommending the wild card whose shoes podcast series to anyone who you think might find it interesting, and please subscribe that way you get to hear when new episodes are available. I have lots more wonderful podcast guests in the pipeline, and don't forget to explore and share previous episodes so many conversations with amazing people who are courageously sharing their stories and experiences across a very wide range of topics. I tweet as whose shoes. Thank you for being on this journey with me, and let's hope that together we can make a difference. See you next time you.