S2 E5: Navigating grief as a neurodivergent family: Nicole Bateman chats with Emma Gray

*Trigger Warning * Talk of grief, death and cancer. Join host Nicole Bateman for an insightful conversation in Season 2, Episode 5 of "Conversations with a SEND Mum." Nicole welcomes Emma Gray as they explore the complexities of navigating grief as a neurodivergent family.

Episode Highlights:

• Building a Life Around Grief: Emma shares her personal journey of navigating the death of a loved one as a neurodivergent family. They discuss the challenges of processing grief and rebuilding life amidst loss, emphasising the importance of support networks and self-care strategies.
• Sorting Out Sadmin: Nicole and Emma delve into the practical aspects of dealing with administrative tasks (sadmin) while grieving. From managing paperwork to making arrangements, they offer insights and tips for navigating the logistical challenges of loss.
• Sharing News with Children: Emma opens up about the sensitive topic of sharing news of loss with children in a neurodivergent family. They explore age-appropriate communication strategies, fostering open conversations, and providing support and reassurance to children during difficult times.
• Life as a Neurodivergent Family: The conversation extends to the unique dynamics of life as a neurodivergent family navigating grief. Emma and Nicole reflect on the importance of understanding and accommodating neurodivergent needs while processing emotions and seeking comfort.
• Finding Rainbow Moments in Grief: Despite the challenges, Emma and Nicole highlight the importance of finding moments of joy and connection amidst grief. They share inspiring stories of resilience, hope, and finding rainbow moments that bring light and positivity to the journey.

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Transcript

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Hello and welcome to Conversations with a Send Mum podcast with me as your host, Nicole Bateman. Today I'm here talking to Emma Gray and she is a mum as well as supporting people growing life around grief. So Emma, welcome. Hi there, it's so lovely to be here. Great to have you. So first of all, can you tell us a little bit about your connection to the SEND community, please? I'm a Royal Marine widow. and I think people need to be careful when they're listening to this because even just by saying I'm a widow might upset a few people and just, if you're listening to this whilst you've got kids in the car or something like that, then just be mindful that maybe you want to hit pause and listen back another time because I talk a lot about grief and death and dying because sadly, As I learned eight years ago, it's the only certainty and it's the only thing that's gonna definitely happen to all of us. But yeah, my husband and I met just after university and we're together for a very long time before he finally asked me to marry him. Maybe he was being a typical warm green there. I don't know. And then once we got married, everything kind of free falled quite quickly. We got two dogs, I got pregnant quite quickly, and then we had two children. Settled into life with me as a Wilson probate lawyer, ironically, so I'm a bit of a death and dying expert and him doing crazy stuff around the world. He went to Afghanistan, he did all the usual stuff, lots of stuff in the rest of it. And then suddenly in 2013, he started to really struggle swallowing and a long story short he was diagnosed with esophageal cancer in December 2013 with a terminal diagnosis. Didn't tell the kids but we knew from day one that it was just a matter of trying to keep him going as long as possible. And initially they didn't think They didn't know whether the treatment would even be able to do that and but they did work some magic. So he had brutal chemotherapy, he had some radiotherapy, having the kids through that, and all this time I had no idea that we were a neurodivergent family. So we had our struggles, we had our rollercoaster big emotions and all the rest of it, but without an understanding as to some of the stuff that was going on in the background. And, I look back on it now and wonder, had we known that, whether I would have navigated things a bit differently, but you just don't know at the time you do the best we can with the knowledge and resources we have. And you can't, you can't be hard on yourself. You, you do the best you can. So, after all of that, we did some bucket list stuff for the kids and then sadly he died in July 2016. The kids were three and five when he was diagnosed and they were six and eight years old when he died. So it was a fairly traumatic time, especially with young kids. Me being a lawyer, he managed to stay in the Marines. The Marines were utterly amazing. He works. pretty much until he couldn't work any longer, right up until the end. He was so passionate about the Royal Marines. And And then I was plunged into life as a widow. And again, I had no idea we were neurodivergent. I had massive emotions myself, as well as navigating the kids emotions. And, and, I tried to live the old life for quite a long time, years. And then ironically, about three months before lockdown started, I realised that we had been really good at sorting out what I now call the SADMIN. I'm now a grief and life coach, helping others, to sort out the SADMIN and grow life around grief, because I don't believe the grief goes. But I do believe we can have a lovely life around it, and take the memories of our loved one forwards, and so on. So I'm quite conscious. I'm doing a very ADHD brain dump on you. So I love it. I love it. I love it. It's interesting, but it's, it's really helpful, and if, if people are currently going, navigating as a neurodivergent family, especially through grief and trying to do this, you've got so much to offer them to. share. So I'm very happy to hear you're braved up. So yeah, we were still in the kind of post pre COVID and I decided that we'd sorted out Sadmin quite well. And the one thing it had given us was financial freezing. And I realised that actually I was saving with no mortgage and all the rest of it. And I was just like, who my age is saving anyway? Who my age has no mortgage? What am I doing? I am wearing myself to the bone and in the process, I'm being, a really bad mummy. Because I just felt like I was stretching too thin. Like I wasn't, I wasn't being the best lawyer cause I was working part time and a lot of my peers were either full time or they seemed to be part time and navigating it so much better than me. And then back at home, I was always the last mommy to collect them and I was frazzled. And I realized that when I'm frazzled, they're frazzled. The children, I used to say in military terms, like the combat indicator of the family. So when they misbehave, it's not necessarily their misbehavior is sometimes. other stuff going on in the family that's making them feel really unsettled and actually that's coming out as what's termed as bad behavior but actually it's overwhelm, it's fear, it's worry, it's uncertainty, it's not understanding and all the rest of it. So I said to work this is me. They wanted me to be partner. And instead I was like, I want to quit. Wow. No, it's just like, I need time to spend time with the children and I need to sort my house out. Cause one of the things I had done in the kind of three, four years that Simon had died at that point is I've moved house, but I put anything I couldn't cope with in the garage and then woken up one day and gone, Oh my gosh, I've got a double garage. That's full of stuff and stuff that I don't want to go through with the kids. So ironically we came to a Long story short, negotiation, plan B, I'd go on sabbatical, but I would work all my caseload down and hand it over properly so that if I didn't go back, everyone was beautifully handed over. And then two weeks after walking out the door, we went into lockdown and I was just like, I wanted to spend time with my kids, but this is not what I was calling for, the universe, this is not what I was calling for. And I learned I am not a teacher for my own kids, so that doesn't work. The child I now know who has ASD just turned around and was like, why should I listen to you? You're not a teacher. You haven't got any teaching qualifications. So I was like, game on, spot on. But I'm trying to help. And then I started my change of career and that's why I now am what I am. Grief and life coach, helping others with this admin. I'm really passionate that people our age sort it out. Like since I've been a widow, I've met loads of other widows and I've seen the chaos that ensues if you're not assorted. And then I almost feel guilty in comparison being better sorted. But we put the time and effort into it, even though I guess our motivation was me being a Wilson probate lawyer and him doing a really risky job. But but everyone should have their stuff sorted. And I think it's actually particularly important if you've got a neurodivergent family, because you need people to understand how they're going to look after the kids. So the For us, the understanding about the diagnosis only happened last year. So finally, my daughter, and it's another very long story but I've got two daughters and my young, they're just turning 14 and 16 this month. And my younger daughter, Has always been very unique. We've always loved her uniqueness, like very unique. She's the kind of child who would be horrible weather and she'd go out without a coat. And you, you can't tell her to wear a coat because we now know she's PDA profile. But then I didn't know that and I would just work my own way around this and be like, well, you've got options. You can wear the coat. Mommy can hold the coat or the coat can stay in the car. But that so much more has come to understanding since we've had a diagnosis. But she really struggled in lockdown. So she was one of the really unfortunate children who we didn't know what profile she had at all. Didn't even know she had a profile. She was just a very happy kid who had always been very happy on her own, had always cut her own cloth and done her own thing. And then went into lockdown and she didn't have a phone. Her big sister did have a phone and it was fascinating, the difference. Because she was really isolated in lockdown and we've got a lovely family. Like I said, I wasn't working. We bought a dog. We've got a garden with comparison to some. We were just so, so, so lucky. But I was googling how to help childhood depression. There was just something not right with her. She just was not happy. And then she was supposed to be in year six that summer. And they went back to school for two weeks and that's when the warning signs came in. She couldn't cope going back into school environment, really struggled going back into the school environment. And then we had a lovely summer at home and it's strange because it always rebalances in the holidays. By the end of the holidays, she's happy, she's loved, she's safe, she's secure and it's always okay in the holidays. And she turns around, she says, I love our life, but it's school time. And so she went up to senior school and the wheels just fell off. They phoned me up at lunchtime on the first day and said, Mrs. Gray, you need to come and collect your daughter. And I would have collected a Karma child off the side of the road off a car crash. She was so distraught. And then it took ages to, we end, we end up going privately, but even then it took ages. So we only got a diagnosis, when you think she's in year nine now, we only got a diagnosis last year. And and it turns out we're all a bit neurospicy in our family. I threw my hat in the wind, screaming the ADHD and the fact that they said that at every meeting, I was like, so I actually don't need to pay for this. You can just tell me now, well, fine. In order to be able to say But and, and that's actually really fascinating is seeing the interplay of, me with a quirky brain that's spontaneous and her with a regimented brain that likes order and all the rest of it. And now we know, and now we've got a diagnosis, it's so much easier to explain, so mummy's brain works like this and your brain works like that. So how can we go about making this work? So yeah, I think that's such an important point because as many of us families that have, multiple, maybe neurodivergent children or parents, children, in the family members. So that interaction within the family, you've got to, you've got to learn your own family brains and everything like that to, to really think about actually how, how can you, you know, work together as a team with, a variety, a diverse nature of brain. So yeah, it's really important. And I think it's so important that we really try to do it in our family because my elder daughter is more like me, but actually I think I'm like both. Like I've realized that I get incredibly overwhelmed and I'm very, very sensory. And I never got asked to be diagnosed for anything other than ADHD, but. I wonder whether actually sometimes you can have a mix. So my daughter is ASTP with a PDA profile, traits of ADHD. metamorphobia. Both children are dyslexic. There's a lot in our family if you start going through all of the diagnosis. And, and I, I do wonder whether sometimes you're more prominent at one, but you have characteristics of the other. So I think I'm glaringly ADHD, but I do wonder if I've got traits of ASD, cause that's how I've able to do everything that I love doing. Cause I like, I put in place order and routine because it's the only way to get my mad brain into order. Some semblance of normality. Yeah, absolutely. And so when, if anyone listening, for example if they, are a neurodivergent family and they're in the middle of grief or if they want to prepare for, the inevitable of death. Then what are some of your tips to help them? Gosh, it's such a massive topic, isn't it? It's a big question. Yeah, it's massive and it depends on, on what SEMD issues you've got going on. when we heard that Simon was poorly the first thing I asked for was therapy, family therapy, but actually I was the only one who went Simon didn't really engage and the kids were just too little. So, and actually I found that it was magical that it was, and my one piece of advice to anyone who feels like they're the most able bodied adult, keeping road on the show, or I can't even think what the show on the road, the show on the road, if you're the person who's in charge of that, and then I would make sure that you've got support and a community that gets it. Because it's so isolating and especially at our age where most people are healthy and, and then even if they do have, say we have cancer, but even if they do have whatever it is that's going to be terminal someday, to then have layered on top of that the neurodivergence. To have people who get it and who understand it is so important. A community, I've got a little rainbow hunting community and people can come into it for whatever reason they want. But I often talk about grief and neurodivergence and just generally my life in a big ADHD oversharing kind of way. But I think, also it's trying to be age appropriate. So when the kids were three and five and Cy was diagnosed to tell them he was gonna die in goodness knows when, would never have worked. Because unless it was happening this afternoon or tomorrow, it just wasn't on their radar. So instead what I did is I came up with an explanation that this three types of cancer that you have the kind of cancer which both grandmothers had had, like breast cancer, where you have an operation, you get treated. And then thankfully there's no cancer left in your body and you go on and live a normal life without your cancer and hopefully it never comes back. And then the middle type of cancer is like daddy's got and either it's in too many places or they're too difficult to get to. So what they do is they give you lots of really nasty treatment, kind of the same treatment as they give the people who are going to be free of cancer, but they're not going to be able to totally get rid of it. But they'll enable someone to live as long as they possibly can. And then the third type of cancer is where the cancer gets too strong. So then when it got to near the end and the hospice turned around to me and said, have you told the kids that their dad is going to die? I was like, not like that. No. And they were like, we think you need to have that conversation. And it made that conversation. easier. Because I could say, do you remember when I said the three types of cancer? And sadly, daddy's not got mama and granny's type of cancer. He's got that middle type of cancer. Well, sadly, daddy's cancer is now the other type of cancer. And it was a horrendous conversation. I can still remember exactly where I was and how, but looking back on it, what was really fascinating is the ASD child just couldn't engage. She just, she started, she started, she said, she said, mum, you're crying, you know, very black and white. Mum, you're crying. I was like, yes, sweetheart. I'm crying because it's sad. And you're allowed to cry if it's sad. And then she said, well, let's tell jokes. And I was like, I just haven't caught her. But they, they say children, it's like jumping in puddles. So having a really deep and meaningful conversation with a child is like jumping in puddles. You can be jumping and jumping and jumping and having your deep and meaningful conversation and they're asking you some really bizarre questions about where's the cancer and you know how's it going to show up and all the rest of it and then suddenly they're out of the puddle and they're going oh I'm going to run after the dog or I'm going to go to this and and they're gone and there's no point keeping on going with your really sensible serious conversation because they're out of the puddle and they're just not there anymore and they're not communicating so I think, I would definitely be age appropriate. I also would never, I, I, we didn't tell them he was going to die, but had they asked us, I wouldn't have lied. So there's a difference between withholding information and lying. And I don't lie to my kids. I've never lied to my kids. And. I try to tell them everything. So even now, if I'm going for tests at the doctors, I'll tell the kids I'm going for tests at the doctors, because then I hope they'll always be able to trust me. Whereas, I think children are so much more intuitive, and whoever said ASD kids, haven't got empathy, haven't met, certainly my daughter. She is, I think because she struggles so much with social communication, she is so in tune with what's going on around her that she's almost overtly empathetic. And then she worries about every side glance, mannerism, this, that, and the other. And, you know, to ask her to read the room is eye opening because she is. So I just don't think it's worth lying to them because they'll, they'll know you're lying and then they won't be able to trust you. And at the end of the day, the thing I am passionate about is being that safe, secure rock for the children to lean on. So they know that whatever tragedy happens, as long as you're alive, they can come to you and that you'll support them. And it's a lot easier said than done, especially when you're managing your own big Yeah. Yeah, absolutely. Yeah. Trying to be that safe space, which is amazing. But also, yeah, having all of those things going on I'm haven't ever been in the situation that you've been in and I can't even imagine just, it's great that you help others as well now using what you've been through to then help others in the same situation, I love that, your rainbow hunting moments. Tell us about why, why is that, what is that? It's very Emma and I love that laugh, but actually it comes from 2014. So talking back on my story, story. That was when Simon was still alive, but he'd been diagnosed and I went up to Edinburgh for a wedding and to one of my friends from home from a long time ago. And then Simon refused to come. He, he was a wee bit poorly, but he was out of the woods of his first load of treatment. But he was also the kind of person who at that stage was like, my life's limited. I'm going to do the bits that I want to do. This is your friends, you go. And funnily enough, a friend of mine who's also called Emma had no husband with her because he was off somewhere too. So the two of us were in the car in that funny bit between the service and the reception, going from one place to the other. And she turned around to me and she was like, How, and this is way before my business, I was still a lawyer, hadn't, Simon was still around. And she's like, how's Simon? And I think she just, and this is where I sometimes wonder, but I can be really black and white sometimes. She turned around and she's like, so how's Simon? I was like, well, he's going to die. She was just like, she was driving at the time. She's like, We thought he was getting better. Like we thought he'd had this treatment and he's getting better. And I was like, Oh no, he's got terminal cancer. Like they're only trying to keep him alive as long as they possibly can. And she's like, Emma, this is terrible. Like I was living in England. I still am living in England. And some of my friends were Scotland. She's like, up here we had no idea. We thought he was getting better. And I was like, No, sadly not. He is better enough to do stuff with us, but he, and work, but he's not better, better. And Shuck, I don't understand how you keep going. And that's where the whole idea came from. Cause I said, it's a little bit like the weather. You can be cold and you can be wet and you can be miserable, but But you've got to keep hope, you've got to believe in rainbows, you've got to go search for your rainbows because above the horrible, horrible, horrible weather, the sun and the stars are still shining and so you've got to go searching for your rainbows and that's where it came from. And then the logo is all totally linked to our family because we're grey so it's a grey background and everything's yellow because yellow was Simon's favourite colour and there's three lines because there's me and the two kids but you can't forget Simon so he's the star. So it's all linked in nicely but yeah, to begin with I was a little bit nervous. I love it. And then we went into lockdown and everyone was putting rainbows everywhere and I was like, oh this is my thing! I love it, I love rainbows. I love that it, you know, is hope is so important in so many different things. I know us as moms generally, often fighting for our kids and, having those days when we're just like, Oh, and you want your kids to be happy and safe, in school, for example, or, other things and, and they, they just aren't. And you're just like, how is this. Ever going to change, and so having hope for all of us is, is so important. So I love the rainbow hunting. Honestly, I totally agree with you because I, especially when Sophie started to really struggle at school, cause I mean, we are what, we're two and a half years later and she still struggles to school. I took her into, in at lunchtime today but we're, we're muddling our way through it. And I see my role as being her advocate. But the answers are her answers and, and I'm really passionate that, even that first few conversations we had when she, I'd pick her up so distraught and she was like, the thing I feel so lucky about is that she wants an education and she wants friends. She just feels like the environment is impossible. So yeah, But she's got that desire and she knows the importance of, of having an education and friends. And and I said to her, I said, you can't see it at the moment, but you have to trust me. The answer is inside you and it will become apparent. We will be able to find it, but you need to find your own answer to this. We can help you and support you and try and make your environment as. good as we possibly can. But the answer is yours and it's inside you and I'm here to help you find that. And I had that conversation with her on the way home. And don't get me wrong, there are days where it just, I, like every SEND mem, I, have my own big emotions, but. Yeah. Hard, wasn't it? Yeah. Oh, definitely. Yeah, absolutely. Many, many cries the last week, of lots of things, but yeah, it's good. It's empowering our kids and, you're then empowering other families as well, which is great. So if people want to connect with you after hearing this, where's the best place? So my happy, very real place. And 90 percent of the time I'm happy on there, but when I'm miserable, I either go silent or I go silent and then I tell people why I've gone silent. But I do have some of my kids friends follow me, so I am not always as open and I have a, and that's rainbow hunting moments. I have a website that has everything on it. So that's rainbowhunting. co. uk, which is really easy to find. And then I have a little, it's very small Facebook group called rainbow hunting community, something like finding rainbows in life storms or something like that. I can't even remember the name of it. But I'm a lot more real on the social media. school refusals and some of the issues in that group because I know that none of the children's friends can see it. So it depends on what part of my story people are interested in as to where they follow me, I guess, but send me a message. I mean, if this has resonated, just send me a message and say, I like this part of your story. How can I, how can I listen in and I'll let you know. Definitely. Thank you so much for chatting with me and sharing different parts of your stories. Yeah. Super helpful. Thank you. Remember every Wednesday a new episode will will arrive on Spotify and other podcasting places. So do have a listen and I will see you next week.