67. Finding Your "Village" as a Parent of a Child with Special Needs with Charlie Beswick

Written By Brittyn Coleman, MS, RDN/LD

In this episode of the Nourishing Autism Podcast, Brittyn joins Charlie Beswick (@ouralteredlife), a mom to two twin boys, author, founder of SEND Gin & Cheese CIC, founder of the More Than a Face charity, AND teacher!

She shares her unfiltered and heartfelt personal journey with her twin boys, Oliver and Harry. Harry was born with a rare craniofacial condition and later diagnosed with autism, while Oliver is undiagnosed autistic and dyslexic. Charlie discusses the challenges she faced, including personal grief and building a support system, and how she eventually founded S.E.N.D Gin and Cheese CIC to support other parents of children with special needs.

Charlie offers valuable advice on finding your "village" and emphasizes the importance of maternal mental health. Tune in for an honest and inspiring conversation about perseverance, community, and the unique journey of raising children with special needs.

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TRANSCRIPT

(Charlie) Some people are fortunate enough to find their people very early on. I didn't. I am blessed. I've got a couple of very good, close friends that stood by me. I lost a lot of friendships.

People just didn't know what to say, how to interact. It just felt too awkward for them. And so they backed away graciously and quietly and there was no arguments. They just faded. And that's a really tough reality and a different kind of grief for mums as well. And dads, we've started to support dads as well now because that's a very unspoken about topic over here.

I don't know what it's like in the US, but dads seem to get left behind a lot on that. But yeah, it took me a long time and so I would say to anybody else that is struggling, you know, it is worth the wait. Persevere, and it is about quality over quantity. You know, you don't need an army. You just need one or two people that truly get it.

(Brittyn): Hi, I'm Brittyn, a Registered Dietitian and autism sibling. I have a passion for helping parents of neurodivergent kids navigate nutrition and wellness for their child, one small step at a time. Here we'll explore practical nutrition tips, learn from top autism experts, break down the newest research, and share inspirational stories that will empower you to utilize nutrition to help your child feel their best and thrive.

Listen in while picking kids up from school, sitting in a therapy waiting room, taking a quick walk or wherever you find yourself, looking for some inspiration and a friend to guide you along this journey. This is Nourishing Autism.

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Visit aeroflowurology.com/nourishingautism. That's aeroflowurology.com/nourishingautism and let them know I sent ya.

(Brittyn): Hey everyone, welcome back to the show. I'm excited to talk about a really important topic today. I am interviewing Charlie Beswick, who is OurAlteredLife on Instagram. And we are talking about how to find your village as a parent with a child with special needs.

A lot of people come to me saying that they're feeling very lonely in their autism journey, they just don't feel like they're fitting in with the groups on Facebook, they don't feel like they have friends that know what they're going through, and I think that this is a conversation that really needs to be happening publicly.

It is really difficult to raise a child with special needs and to not be able to have your [00:03:00] village or to be told to find your village. And you're like, well, where do I find it? It can be really disheartening. And so I wanted to share some tips from Charlie, who has really built her village from the ground up and now helps other moms find their village as well.

Charlie is mom to 18 year old twins, Oliver and Harry, and is the author of the best selling book, Our Altered Life, a brutally honest account of how she came to terms with a life that she never expected. She's also an award winning blogger and her family's stories have been featured internationally on Sky TV and National Press.

Charlie founded S.E.N.D Gin & Cheese CIC to support maternal mental well being at the point of their child's diagnosis and beyond. She also founded More than a Face charity and has spoken with over 7, 000 students to educate them on visible differences, including behaviors typically associated with autism.

She's a teacher with over 16 years of experience in both primary and secondary schools. I'm excited for you to listen in on this [00:04:00] really honest conversation. And I hope that it encourages you to have these kinds of conversations out loud and also helps you find your village as well.

Brittyn: Hi everyone. Welcome back to another episode of the Nourishing Autism Podcast. I'm so excited to be sitting here with Charlie Beswick. Charlie, thank you so much for being here.

Charlie: My pleasure. I'm excited too.

Brittyn: We have been in contact I think it's been a year now, but I have been following you and just love everything that you say and I got to come in and chat to your community as well.

So it's really fun to finally be able to have you on mine. So I appreciate it.

Charlie: Thank you. No, likewise.

It was brilliant having you with us.

Brittyn: Oh, thanks so much. Well, so tell us who you are, what you do, and more about your family.

Charlie: Okay, so as you will tell from the accent, I am from the UK. I'm mum to twin boys, Oliver and Harry, who turned 19 this year.

Don't know how that happened. When my twins were born, [00:05:00] despite having a perfectly healthy pregnancy, I was told that Harry had been born with a rare craniofacial condition. So for him, that meant that he'd been born with no eye, no eye socket, no ear, no nostril, and a short underdeveloped jaw. We were also told that he may have brain damage and not walk, but thankfully he's completely mobile.

He is autistic, so although he's almost 19, he functions much younger. And will need one to one care for the rest of his life. So that's Harry. Oliver is undiagnosed autistic. He is dyslexic as well. So we've had quite the challenge. It's as stressful as it is wonderful and rewarding at times.

And I was a teacher when the boys were born, but as lots of mums find when they have children with additional needs, being able to juggle both lives and priorities was really tricky, so I ended up reducing my hours, and I currently still teach two days a week, but I'm just about to leave to work on my own business.

Brittyn: Wow, and [00:06:00] you run an organization called S.E.N.D Gin and Cheese, which we will talk about later, but do you want to give us like a small scope of what that is before we really dive into it?

Charlie: Sure, well S.E.N.D Gin and Cheese started as a free online community on Facebook because when my boys were born, there were very few support groups out there.

It was 2005, so Facebook was very new. And I knew I wouldn't have joined a group called S.E.N.D Help and Support. Over here in the UK, I don't know if the US is the same. S.E.N.D is the acronym for Special Educational Needs and Disability. So that's where the S.E.N.D bit came in. So I thought I wouldn't have joined S.E.N.D Help and Support because I kind of wanted to think I could do it all on my own, but I would have joined S.E.N.D Gin and Cheese because it sounded a bit more fun.

So that's where the name came from. I'll tell you a little bit more about it shortly.

Brittyn: That's amazing. We don't have that acronym here and so I remember when we first connected I was like, okay, I need to find what, I know that this name is amazing and it made so much more sense.

And then I love the flair on the gin.

Charlie: I think people join [00:07:00] thinking it's a subscription service. So I hope they're not really disappointed.

Brittyn: I mean, it sounds like it could be a great dual business.

Charlie: Yeah, possibly. It's what gets me through the day.

Brittyn: I love it.

So, I know that this might be kind of a vulnerable question, but you are a pretty open person online and have shared your experience about Harry's diagnosis and everything that you've gone through to help get him the right services.

And you also pull this into your work with S.E.N.D Gin and Cheese. And so I would love for you to share about your experience as you were helping him get that diagnosis, his autism diagnosis, but also the different supports that he would need. Can you share more about what that process looked like for you?

Charlie: Yeah, of course, of course. I think for me, and you're right, I am very honest with what I say, because I try to be the mom I needed right at the beginning so I can be brutally honest at [00:08:00] times. So I have said online and in my book,

which is Our Altered Life, not a plug there, but just to let everybody know that's what my business is called but for me, I didn't want to be a S.E.N.D mum.

I didn't want a disabled child. It's not the life I'd imagined. It's not the life I'd planned for. I am a recovering perfectionist, a reformed perfectionist. And I just felt that I'd let everybody down, including Harry, including him. And I felt like a real failure that I couldn't even give my child the basics of a face, let alone any quality of life.

And then the autism diagnosis then went on to really rob me, as I felt at the time, of what I felt would be a lovely relationship he might have with his twin brother, that bond that I'd been dreaming of, knowing that I was having twins. And so I really struggled personally. For the first six years, I did that very quietly.

I call it the lie we wear, where we kind of smile behind, you know, we would struggle behind this smile. And [00:09:00] then my marriage broke down and I ended up having a breakdown when the boys were six. And at that point, that's, I think, when my sort of self reflection journey began. And I realized that the only thing I was actually guilty of was blaming myself for something that had never been my fault in the first place.

And that had stopped me from being the mum I needed to be. It was never my fault. It was never, and it was never anything to do with Harry and Harry's appearance. It was always to do with my perception of a failure and my perception of letting everybody down. And that's why I help mums now, because over in the UK there's a huge gap in the market.

There's a huge void of support for maternal mental well being and mental health. At the point of you getting that diagnosis, that life's going to be very different. Life is going to be altered from the one that you planned. And then in terms of care that Harry needs, he is verbal to a degree, you have to know him to be able to understand what he's saying and he can't have a spontaneous conversation with anybody.

So he's really quite limited, he's [00:10:00] got no sort of road safety, no stranger danger, he needs personal care attention, I have to help him to dress and to wash, so he's going to need that forever. And I think for parents, that's another huge sort of elephant in every room, you know, what's going to happen to my child when I'm not here to do that for them.

So again, that's something that I address with the moms as well.

Brittyn: I think that these are resources that are obviously so needed and I think sometimes are hard conversations to have because like you said, you were struggling privately and sometimes it's just hard to talk about, especially when you

don't feel like you have other people who are understanding what you're going through because I have a lot of parents who are working with me that joined my

membership or my community and are finally like, wow, I didn't have any other parents who are going through the same thing as me to be able to talk about our experiences.

And I feel like it can be this private struggle when it's [00:11:00] so great and normal to be able to talk about these huge feelings and grief that a lot of parents say,

you know, I'm grieving the life that I thought that I was going to have. I'm grieving the life that I thought my child was going to have. And that that's all completely normal and good to be able to experience that with other

people.

Charlie: And actually there's some research that suggests that that's really necessary.

And that it's a biological inevitability. They say that when you're carrying a baby, you have these hopes and dreams to get you through the sleep deprivation and the terrible twos and the up all night crying and all those things because you think, well, once I've got through this stage, I've got all that to look forward to.

So when you have a baby with disability and that's gone, it's almost like you have to recalibrate. And so that's a part of the grief process for mums of disabled children as well. And I think it's always really important to stress that you can absolutely adore the child you've got and still grieve the life you didn't have.

Those two things [00:12:00] can completely coexist and it does not make you a bad person. It just makes you human and it's something that we have to go through.

Brittyn: I think that's so true. It's an "and", not an "or". You can do both.

Charlie: Yeah. Definitely.

Brittyn: So, I mean, this whole process can feel really isolating as a parent and people say, you know, it takes a village, it takes a village, and then it's like, well, where's the village?

Where do I find my people? What was that process like for you and how did you find that village? It sounds kind of like you made your own also.

Charlie: I think I did to a degree, partly because I was so stubborn, and at the beginning I didn't want to engage with other special needs groups. It felt really, it just felt icky for me to be making friends with people just because they've got a disabled child.

I was thinking, well, what if they're not even a very nice person and I'm stuck with them as a friend just because we've got disabled kids in common? And so I kind of stayed away. I was my own worst enemy in many ways. [00:13:00] But then I started, I published my book and I started blogging and I found a blogging community.

So that became an online space for me of mums of children with S.E.N.D. And so that became my first tribe, if you like. And then from there I created S.E.N.D Gin and Cheese, which has become a tribe and more, you know, it's more of a movement now really over here. And internationally, we've got people in Germany, Hawaii, all over the place.

So, yeah, I think I created what wasn't there for me at the time.

Brittyn: Which is amazing.

You say stubborn, but I don't think that's the case. I think that that's amazing that the internet brings us such amazing people that we might not

be able to connect with and I think Instagram is a really great example of that too because I see this really amazing community of moms who have kids on the

autism spectrum or with special needs being able to connect here in the States but I also see I [00:14:00] mean you're doing this amazing thing in the UK as well. I also wonder, how long did it take you to be like I found my village.

Maybe that's a interesting question, but I wonder if it might make some parent feel less alone.

Charlie: 12 years for me, some people are fortunate enough to find their people very early on. I didn't. I am blessed. I've got a couple of very good, close friends that stood by me. I lost a lot of friendships.

People just didn't know what to say, how to interact. It just felt too awkward for them. And so they backed away graciously and quietly and there was no arguments. They just faded. And that's a really tough reality and a different kind of grief for mums as well. And dads, we've started to support dads as well now because that's a very unspoken about topic over here.

I don't know what it's like in the US, but dads seem to get left behind a lot on that. But yeah, it took me a long time and so I would say to anybody else that is struggling, you know, it is worth the wait. Persevere, and it is [00:15:00] about quality over quantity. You know, you don't need an army. You just need one or two people that truly get it.

Brittyn: Yeah, I think that's really great advice. And I think, again, having people who have been through this and being able to establish these communities. I mean, it was 2005, whenever you first received the diagnosis, which first of all, back in the early 2000s and in the 90s, I mean, my brother was diagnosed with autism in 97, no resources, no community, there's nothing.

And I mean, with the development of social media, you are able to connect. And it sounds like, I mean, Facebook was one place that you were able to really create this kind of community, but, it's definitely a conversation how different it was.

Charlie: Yes, and I think even now, sorry to interrupt you, even now I think people have to be a little bit wary because social media is a bit of a double edged sword.

In one sense we can compare and the comparison journey can be very, very painful and very triggering. And then [00:16:00] there are so many online communities now that sometimes we can dip in and some of them can be a little bit toxic. Some of them are with people who aren't quite in the right place yet, and they're still very angry, and there's nothing wrong with that.

I've been furious through my journey. But I think when you get a lot of people in that state, it kind of fuels it. And so lots of people will come into my community saying, wow, there's, there's no backstabbing. There's no falling out with people. And I'm like, no, because I make it clear that this is a compassionate space.

 So I think you know, go out there, find the communities, but just be a little bit mindful and cautious with your energy about where you're placing it.

Brittyn: That's great advice. It's really good advice. So now tell us about S.E.N.D Gin and Cheese. What is it? What do you do? What does this look like online? And then do you host in person events as well?

Charlie: Yeah, we do. So I offer mentoring for mums, and some of the mums will come in for mentoring sessions saying I can't [00:17:00] afford your time, and I'm not expensive over here in the UK at all, but it broke my heart to turn mums away. So I created S.E.N.D Gin and Cheese as a free Facebook community, just so that mums could get together.

And in the space of 12 months we've got over 3,000 mums now. We've just launched the dads group. So that's got just over a hundred. That's going to be a completely different vibe. I think the dads talk and come together in a completely different way than mums do. So in S.E.N.D Gin and Cheese, we've got this community together.

We host meetups. We're going nationwide across the UK this year. Last year, we did three meetups across the UK, North, South, and centrally. And yeah, Christmas events, so it's growing from strength to strength. I'm also in the process of developing some mental health support. That's my passion. So we offer, we have S.E.N.D Fun and Friends, which is kind of like a stay and play program in the school holidays for parents to come with their S.E.N.D children and siblings.

So that's been really well received. [00:18:00] But for me, mental wellbeing and maternal mental health is just crucial because I think if as a mom, we don't have our foundation solid, you know, we are juggling so much. We are the linchpin that holds everybody together and we need to be strong for ourselves before we can be strong for anybody else.

And so that's my real passion. So we'll be rolling that out this year as well. I could talk all day about S.E.N.D Gin and Cheese courses. I won't. But if people wanted to sort of, you know, hop on my mailing list, I'll be sending information out there. But yeah, that's the vision for this year.

Meetups, grow the online space, which is a really nonjudgmental, compassionate space where people can share the wins as well as the struggles, because a lot of groups come together to share what's going wrong. And again, that's really valid, but sometimes nobody gets the fact that, and you will get this as a nutritionist, like, oh my God, my kids have just tried broccoli or my child's eating a different kind of nuggets.

And we're just like, yes! And you tell a friend that they're like, [00:19:00] okay... that's weird. So, when we're together and we all understand that you can be each other's cheerleaders as well as each other's support and so more of that, please is what I'm hoping for in 2024.

Brittyn: That's amazing.

And you're right. It's so nice to be among people who get it, are also in the same headspace as you as well. And some of those wins that people share a lot of food wins in my community, because that's what I host. That's what I do. And a lot of times they're saying I have not been able to share this win with anybody because nobody realizes how big of a win this is for my child to touch something

new or for them to put something on their plate or, we went to the grocery store and there were no meltdowns, like big, big things that sometimes you keep those wins to yourself, you don't get to celebrate them when you're not among people who really get it.

Charlie: Completely. And I think we can forget them or we can overlook them if we're not celebrating them. I think, you know, our lives are busy, they're hectic. And unless we are pulled [00:20:00] into the present and just reminded what's going well, sometimes the tough stuff can dominate. So I think it's really important to celebrate the wins as well as the worries.

Brittyn: Totally. I popped in for a virtual session for you. So tell me a little bit about those for people who aren't in the UK, or can people from anywhere join?

Charlie: Yeah, absolutely. Yeah. So, you did the tips in 20 session for us so that anybody can join that webinar.

 It's free. It's 20 to 30 minutes tops, because I know much like yours, we like to keep it bite sized because it's a bit more digestible then although I've probably waffled on for ages now and yeah, I send notifications out. I advertise it on my social media and I send notifications out to my mailing list so they don't miss it.

And I just get guest experts in to offer a little bit more above and beyond my mental health support because I think it's a nice mixture of, you know, I

offer that mental health nurturing aspect and then we get the practical people in that can come with that real tangible [00:21:00] action points that can help their children to develop.

Brittyn: That's amazing. And I think it really is taking that holistic approach because there are so many pieces and you're juggling all these pieces and you don't need to be the expert in every single thing. Could you elaborate though, when you help moms with like mental health, what is that, what does that look like and how do you support moms?

Charlie: Yeah, sure. So I'm not a counsellor, so I have to put that out there. You know, I'm not a trained therapist. I mentor through experience. And for me, my superpower, if you like, I guess my special interest is the language that we use. So when I'm talking to mums, I will listen out for the sort of things that they're saying to themselves repeatedly.

And we will either put an action plan together for actions for their children, if that's how we need to move forward. But more often than not, it's about the mums coming to terms with the life that they are facing. Lots of times they beat themselves up, lots of times they're trapped in guilt and grief, and we have to address that.

And so there's a lot of coaching, a lot of [00:22:00] listening around. Being able to move people through that grief and I talk about acceptance versus acknowledgement and really

quickly I'll just explain that sometimes people encourage us to accept the life that we've got and we can't do that because for me i'm never going to accept the fact that

 I will die and leave Harry vulnerable one day, but I can acknowledge that and once I can acknowledge it, then I can put things in place.

So it takes me out of that victim's headspace and that passive place. But it relieves the pressure of me that I've got to be okay with that reality because I'm not. And so I talk a lot, I coach a lot around the difference and allowing people to feel it all and allowing them to know that it's okay to feel all of it.

And so that's my passion really is helping moms to get unstuck so that they can be what their children need them to be. And just be a little bit more who they want to be as well.

Brittyn: That's beautiful, Charlie. And I love that. I mean, acknowledgement versus [00:23:00] acceptance. I think you're right. Sometimes you can get stuck in a place where we can't build on it.

And until we're able to maybe take a few steps back, sit in it, it opens up the gates to be able to move forward. And I think that you put that really beautifully. So what advice would you have for a parent or mom that's really feeling isolated and stuck right now who's maybe looking for community or just looking for the next step forward?

Charlie: Yeah, if it's community, I'd say be proactive, comment in local groups. If there isn't a group that you can find, then create one, make one, reach out and just say, you know, I have a child with additional needs or I have a disabled child. I'm looking for some company with somebody that gets it truly.

And as I say, it doesn't have to be loads of people. Sometimes one or two people can make all the difference. And in terms of coming unstuck, then I would say join my mailing list because I send out sort of mindset tips every Thursday. I do that on my Facebook page as [00:24:00] well. And don't be too hard on yourself and don't believe everything you think is a big one because I think lots of times we beat ourselves up.

And we can be our own worst enemy.

Brittyn: That's great advice. Thank you for sharing that. And can you share where people can find you, and we're gonna link everything that you share in the show notes as well, because I know you have some free resources as well to share.

Charlie: Yep, I do. So Our Altered Life is the Facebook page and Instagram.

That's all my social media handles. And then S.E.N.D Gin and Cheese. Is a kind of, it's a branch of that. So S.E.N.D Gin and Cheese is on Facebook as a community. And there are just some really quick questions to answer so that admins will let you in. So we know it's the right people in the right space and we can protect everybody.

Brittyn: That's amazing. And so I'll share your links for the resource to also join your mailing list, to join the Facebook page, to follow you on Instagram, which you are an amazing follow. I love your honesty on Instagram. Sometimes your stories, I literally laugh out loud, Charlie. You're just like, it is what it is, and [00:25:00] this is what's happening, and I, I can't even give you an example, but I just, when I see your stories pop up, I'm like, I can't wait to see what Charlie's saying.

I love it. I love your attitude, your viewpoint on life, and just all of the energy that you share, I think is really important.

Charlie: That's really kind to say. Thank you very much.

Brittyn: Well, thank you so much for joining us. I really appreciate it. And everyone go connect with Charlie online and check out her resources and her book as well.

Charlie: Thank you. Yeah, thank you.

Brittyn: Thanks everyone.

Transcribed by Descript

About Brittyn Coleman, MS, RDN/LD

Brittyn Coleman, MS, RDN/LD, is a distinguished Registered Dietitian and Autism Nutrition Expert, known for her innovative, sensory-friendly feeding approach to nutrition for children on the autism spectrum. As the founder of the Nourishing Autism Collective, and as an autism sibling herself, Brittyn brings both professional expertise and personal understanding to her work. She empowers families with her expert guidance, helping children receive essential nutrients for optimal health and development. Her strategies are tailored to the unique dietary needs and sensory preferences of each child.

Brittyn's influence extends beyond her membership site through her active social media presence and her popular podcast, 'Nourishing Autism'. Her educational content on Instagram, YouTube, and other platforms has established her as a leading voice in autism nutrition, providing valuable resources, practical advice, and a supportive community for parents and professionals. 

Brittyn Coleman, MS, RDN/LD https://www.autismdietitian.com
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