On the Spectrum Empowerment Stories with Sonia Krishna Chand: Adult Autism, Neurodivergent, and Mental Health Expert

From Burnout To Balance: Supporting Caregivers Of Neurodivergent Loved Ones with Eleonora Magri

• Sonia Krishna Chand | Adult Autism and Neurodivergent Mental Health Expert | Empowerment Coaching • Season 2 • Episode 51

Share episode

Send us a text

We explore why caring for caregivers of neurodivergent people must come first and how small, consistent habits can reverse burnout. Eleonora Magri shares practical sensory strategies, community resources, and a mindset shift that prioritizes human needs over rigid protocols.

• expanding caregiving beyond elder care
• why caregiver wellbeing is the first treatment step
• meeting parents where they are and pacing for readiness
• naming early burnout signs and reframing urgency
• sensory self-care that calms the nervous system
• low-cost strategies that fit short windows of time
• building a support village and ending isolation
• practitioner humility and human-first practice
• grief, guilt and giving emotions space
• introducing Inclusive and the Caregiver Balance Sheet

Go to www.inclusi.org  and download the Caregiver Balance Sheet


SPEAKER_01:

Hello everyone and welcome to today's episode. Many people, when they think about caregiving, a lot of people tend to think of the elderly population. And perhaps they see caregivers as people who may perhaps help them go bathe or feed them or uh do daily tasks which can get compromised when you get older and are not able to move or be able to do many things for yourself due to your body aging and things changing. But what many people overlook is the fact that there are people on the autism spectrum who have high support needs or other people with neurodivergence with high support needs that need caregiving. And all caregivers, whether you're working with the elderly, whether you're working with other people of different abilities, whether you're working with neurodivergence, all caregivers have a special place in our hearts because it takes a lot of time, dedication, heart and soul, and just overall compassion to be a caregiver. And needless to say, I can't harpen this enough, the patience it takes as well. And here to discuss what it's like to be a caregiver of a neurodivergent population is Eleanor Magri. She is a board-certified behavioral analyst and has been in this practice for 18 years. So, Eleanora, and thank you for being with us today. Thank you so much.

SPEAKER_00:

I have been supporting individuals, neurodivergent individuals and their families for many years. And I have found so much compassion working with them. And they have been just opening up, right, their homes, their vulnerability to receive any support, to try to understand the needs of their loved ones and try to survive, right? To try to push forward, to try to give independent life skills to their loved ones. Um, and in this journey, I um realized the huge gap that there is in supporting the caregivers, right? So as a professional that caught is called in to solve crises, right? Behavioral crisis of an individual, we come in and we have our bags of strategies. Mom, dad, do this, do that. And we often forget to ask simple questions of mom, how are you? Truly, how are you? And pausing in this moment. And that's where I truly realized, wow, this is a huge gap as professionals and in the service industry of providing supports to neurodivergent individuals and their families. There is a need to talk more about this topic and truly support them. And I have realized how caring for the caregiver is truly the foundational strategy, number one, that should be addressed in any treatment and in any support system for the families.

SPEAKER_01:

Absolutely. I think that definitely gets overlooked a lot when we're talking about treatment and helping those who have high support needs is oftentimes we forget to realize. And I think this goes across the board with caretakers too, is that we forget to realize that they have their own needs that they need to meet. They have their own cup they need to fill so that they can continue to pour, right? Like they say you can't pour from an empty cup. How would we begin this discussion? How do you even begin to broach this topic with a caregiver of somebody who has a neurodivergent child, for example, about their own self-care?

SPEAKER_00:

Well, just like when we are supporting a neurodivergent individual, we gotta meet them where they are, right? Not two neurodivergent individuals are the same, right? They might be presenting some similarities, but essentially this is a personal journey. And so meeting the caregivers where they're at in their journey, right? They're they're caregivers that might be um a single mom with three neurodivergent individuals, right? There might be another parent that has maybe a little bit more of a support system and maybe not as overwhelmed. And so truly meeting them where they're at and embracing uh and reframing this approach of pausing, pausing and asking ourselves how we're doing. And this goes, you know, in terms of the families and the parents that we're supporting, but also, you know, in the profession of providing services as professional, we gotta ask ourselves before stepping in into this situation and in these families, how am I doing? How am I doing? Am I ready? You know, what am I bringing with me today? Have I cared to my my own needs before stepping in in this crisis and helping and helping others? Because we know that we can care and do so much, so much good, but we can also not be able to fully be there and present and providing truly the care that our neurodivergent individuals that we love so much need.

SPEAKER_01:

What has it been like for you to have these conversations with the caregivers? And what are some themes you've noticed throughout your work of needs of caregivers that aren't met that they need to go and approach with that pause method?

SPEAKER_00:

Sure. It has been um very emotional because caregivers are not ready for somebody to truly ask them how you're doing. I think in our culture and society, we're quick to say, hey, how are you? And then quickly we go to talk about Johnny and his needs and all the things, right? And so really having to go back and just say, no, no, truly, mom, how are you doing? How is how you doing? Let's let's explore that. And having parents break down in in tears and and just really saying, you know, like I have no idea how to answer that question. I have not considered that in years. Like, you're truly maybe the first person that have asked me, truly, how am I doing? And as the attention has been within the caregiver for a moment and not towards the person that I care for, right? So it's packed with a lot of emotions. And so again, we gotta meet them where they're at and and look at how ready they are to have this conversation. Sometimes it's just the repetition of going in and talking about mom, how are you doing? And really giving them some tools of how to answer that question. And it's uh it's been a self-discovery process for a lot of them, right? They have lost the identity of who they are as a person, right? The identity is I'm Johnny's caregiver, and this is my role, and he occupies 24-7 many, many years. And so it's being packed with emotions. It's packed with emotion for sure.

SPEAKER_01:

So, what have you found to be effective when dealing with that aspect of caregiving and dealing with balancing and managing being that caregiver while also working on the needs of that child or adult?

SPEAKER_00:

So, yeah, so um again, each each journey is very different. So I'm I might be called in where there is a blown-out crisis, and so that's of course needs to take precedence. As soon as we're able to address that, we need to carve out these small moments of caring for the caregiver and asking those questions. The first step is really to create awareness that there is even there's even a space for asking the question and a space for recognizing the symptoms of burnout, the symptoms of am I doing okay versus I'm doing so-so versus I am not doing okay at all because wow, I typically don't eat. I typically barely remember to take a sip of water, right? And so it's it's a bit of a what I was talking earlier about a self-discovery of creating awareness of what burnout is, what it looks like, very clear, simple, tangible adjectives, right, for the caregivers to recognize and also reframing a little bit the what's considered a crisis in terms of your own needs, right? I talk a lot about the as soon as possible versus as late as possible because as caregivers, we don't we don't recognize our own needs at as as soon as possible type of urgency input, right? We tend to put in that category of as soon as possible all of our neurodivergent individual needs, right? Of our child, of our person that we're caring for, those are definitely urgent. But we never look at our own needs within that, you know, burnout, exhaustion, as that's that's my indicator that I have to take this as a as an urgent need and do something about it.

SPEAKER_01:

What are common symptoms of burnout that you've noticed when it comes to caregiving? And what would be some of the most effective solutions to that burnout once a person has reached that stage?

SPEAKER_00:

Well, definitely the common symptoms are the not sleeping, the not attending to their own medical needs. And so, for example, I know that I have to, you know, go to the doctor and do my early checkup, or I have I have experienced, you know, these huge headaches for you know X amount of time and really postponing those, right? The also not identifying any interest in anything that it's outside the caring for the individual, right? So no interest in socializing, um, you know, like mom, what do you like to do? Like, do you like to read? Do you have an interest, a hobby, right? Not being able to point out anything that it's fulfilling as a person, right? That it's definitely a symptom of that exhaustion and burnout. Obviously, I say it kind of in quotes because for a person that sees it for the outside, you know, I see a mom and I can I can I can just see it in their face, right? The burnout. But the mom is uh so used to seeing herself in the mirror, if at all if she's able to look herself in the mirror, right? And doesn't pick up on those, on those cues, right? Um, that that really, you know, she she carries those those symptoms with within her. The other question that you asked just to follow up on that is some effective ways to address that within, again, the little time that the caregivers have, the little energy that they have left. It's looking at our sensory system. And I I found a lot of positive strategies in what I call sensory self-care. And it's really being able to access simple strategies that are doable, that don't require a lot of time. It's actually less time consuming, it's it's less doing and more receiving from these little strategies that really help our nervous system regulate, right? And again, for an overwhelmed caregiver, that might be the shortcut to a bigger relief later on. One important thing, too, that I found that creating awareness is also self-care in itself is sometimes we don't even know what that truly means, right? We might have some ideas that self-care is I gotta take five hours of you know a walk, or I have to do these huge things, right? Or it's a luxury, or it requires so much energy and time, right? We often don't fully know what that means. And so, really informing and educating, right, uh the parents on what self-care can look like and that it's doable. There are strategies that can really help you regulate your nervous system, and it's something that doesn't require a lot of time, it's actually something that you can do with little time, and as long as it's consistent, it can really bring you the benefit that you need to make it to the next step of being able to maybe dedicate a little bit more time and energy to that self-care piece.

SPEAKER_01:

In your experience in these years of being in behavior analysis, have you found any particular cases that really have strung at your heart and have changed you in profound ways?

SPEAKER_00:

You know, I think that each family that I've worked with has brought their own real little nugget of change within me. Each family has, I've I've just been moved by how they've all been very inclusive in their ability to welcome my help and truly made me feel as part of their family and as part of um team player in journeys that are quite vulnerable, situations that are quite difficult and very personal. So I uh have been, I don't know if I can pinpoint one specific one. I think everyone has been contributing to and pushing me forward, I think, in terms of uh a responsibility to do something about making a change and pay it forward, especially in this topic of caring for the caregiver, because it's also creating awareness for the community, right? For the support systems that family members of caregivers and society at large, you know, wish we we owe to do a better job into creating supports, reaching a hand, being able to recognize again those symptoms. That's what I'm trying to do today.

SPEAKER_01:

And you it seems like you've done an amazing job with the work you've done and with showing people that there is help available and resources and tools available so that people can take care of themselves while caring for another individual at the same time. And that two things can coexist. Exactly. Um and one thing that just comes to mind often is you know, a lot of times when it comes to also having people who have kids with high support needs, one thing I've heard from parents in my line of work as a therapist is also the financial strains in some ways, right? Because a lot of the finances go into dealing with for the needs for the kid, which doesn't leave a whole lot of resources available. And it's kind of like they have to conserve that because they need that help in providing for the kid or providing because the special needs, the just the the more the support they need, it takes on more. So how do you then comfort then that caregiver, assure that caregiver whose number one worry is, okay, well, if I do something for myself, there may not be enough.

SPEAKER_00:

Yeah, I think that's um, you know, besides not having enough time for caring for myself and engaging in self-care, it's also another one is the financial um kind of implication of maybe spending some money in order to do that. The good news is that it's a misconception of self-care. Of course, there are self-care activities that are expensive and can cost a lot of money. But the truth is that there are simple strategies that we can access nowadays that are backed by research that can help our nervous system reset. And it's again a baby step and it's something that it's doable. And I want to encourage caregivers to take a moment to reframe um this concept of self-care and looking at some of these barriers, right, that impede us to access it. Right. And I know I know it's a process, and that's why just like recognizing the symptoms of burnout, it's um it's it's it's a very hard, right? Because we are in the crisis zone. We are prov we are wearing so many hats as caregiver, we're the financial provider, we're the support system, emotional, physical, right? All of the things. Um, and and that's why we're trying to have more conversation about it to make make them aware that self-care, the self-care myths, right? What's truly can be uh a self-care strategy doesn't have to cost a lot of money, doesn't have to take a lot of time and empowering them to accessing these resources that are available to them. And the same to the support system that they might have to encourage them to use them.

SPEAKER_01:

What is a sign of or symptom that people can look into for regulating their nervous system? How do how do people begin to even recognize that their nervous system is heightened in some ways? Because a lot of times people may not even realize, right? A lot of people may feel anxious or overwhelmed. A lot of people may think, okay, this is part of the territory of caregiving. You know, this comes with it because I need I want to make sure I'm doing a good job. I want to make sure I'm doing a service. I want to make sure that I'm giving the best quality of care. But how do people even begin to then recognize what is going on in within their nervous system? Like how do people start with that sensory? Right.

SPEAKER_00:

Right. It's um requires that pause and that check-in with how they're doing and it it it comes with with some practice, right? So some of the exercises that I do with caregivers is that obviously it's it's a bit easier to recognize other people's symptoms of overwhelmed nervous system. And so that's where we will start with recognizing. Sometimes they're pretty good at recognizing, you know, they're neurodivergent individuals' signs of dysregulation. And so then we just ask questions and practice recognizing when parent might be feeling the same. A lot of the time, um, they're able to recognize it and just say, wow, like I'm I'm responding, and every time I'm responding, I'm screaming and I'm tensing up, and you know, I I cannot catch my breath, and you know, my heart rate is pretty elevated. It's a it's a little self-check-in that it's required in those moments. And it takes practice because we just go in automatic pilot.

SPEAKER_01:

What other questions also, apart from that, would you ask to try to find out about a heightened nervous system?

SPEAKER_00:

Yes, uh, you know, those are those are the main um symptoms that that we ask uh, you know, in terms of heightened nervous system, you know, how then the repercussion on their overall quality of life, right? And that might require a little bit more in-depth question. Most of the time, uh, it's not uh possible within those quick moments that we have. And so once they're able to recognize those first symptoms, we go directly into okay, since we're talking about this, let's take five minutes and let's explore the simple sensory self-care strategies to try to decrease that. And again, that's a very individualized journey that I might, for example, respond very well into some headphones and a dark room that really suits. And we know from from research that that helps the nervous system regulate, but it's not it's not for everybody, right? Parent with high anxiety might feel the dark room scary, right? Or based on their profile, it might not feel safe. And so they might feel maybe more prone to listen to some soothing music with maybe just a dimmer light, right? I found also that weighted blankets and movements of the body are again some very simple ways that we can access that relief in our nervous system. And but again, it it takes a little bit of that knowing what I like, knowing what I don't like, a little bit of that inner journey, right? Of of diving within and taking that moment. And that's why I was talking earlier about pausing. And the pause might be very brief at the beginning with some caregivers, and then little by little we make the pause and this time that we take to explore the symptoms of burnout and the preferences in in some of these strategies with a little bit of time. And then all of a sudden, I find myself working with parents 30 minutes at a time where we are able weekly to spend the time to really dive in into then, like where you were asking maybe deeper questions about the dysregulation of the nervous system and how that might even have some deeper roots into maybe their own childhood, maybe their own trauma, maybe rather very more complex ramifications of the caregiver and and how they are as individuals.

SPEAKER_01:

What do you say though to the caregivers who, let's say, for example, are doing everything single-handedly? Because there are, you know, you gave an example earlier about um a single mom, for example, who may have three kids who are neurodivergent and varying support needs. What would you say to those who feel like they don't have that extra helping hand at home, for example? And how is it possible for those parents then to carve out some time for themselves? Because that I can only imagine the pressure then is even that much higher because they don't have that extra support. Absolutely.

SPEAKER_00:

Very, very difficult. It's conversations about finding their support system, their village, and they might not have it right in their home or even sometimes, right, not even in their very close family relatives, right? Some of them unfortunately feel abandoned because their experience is not understood, right, for a variety of variety of reasons, but it's it's it's very overwhelming. And so we try to find supports within the community, right? Putting them in touch with some resources, finding out from maybe other, you know, parent support groups, people in the community where again we can extend a little bit more their village and not being so isolating. One of the things that you know we we recognize when we are looking at behavioral change, we know that a lot of a lot of it is that reinforcement, right? If we don't have somebody that provides us that positive support and encouragement, we're not going to sustain the change. And this is again a huge, a huge gap on the caring for the caregiver because we know it's an isolated journey. So bringing in the community, bringing in just even another parent that maybe has been able to have the support or has gone through maybe the different stages and pair them with these other parents that might be, again, a single mom or you know, just started a journey of caregiving, um, can a relief, a ray of hope for them.

SPEAKER_01:

So, for those that, let's say, don't have a community, how do you go about and guiding them in where to find it in how to even get that started?

SPEAKER_00:

So that was one of the reasons why I created Inclusive, which it's a nonprofit organization. And I recognize that again, not everybody has access to the resources, the support, the time. Sometimes, in order to get services, uh, there's a huge waiting list. Sometimes the resources are not properly trained or properly distributed. And so I've tried with that approach to provide some of the support system and become the support system for these parents. And that can be something that we do on a weekly basis, on as needed basis for the family. I feel a responsibility that we need to find the support. And where there is no support, then um I become the support. So when did you start this nonprofit? So we became a nonprofit um just this year. It's called inclusi. And in Italian, this means inclusivity, right? And what a what a what a better word to not only include our neurodivergent individuals and their families and bring awareness of their needs and their stories, but also let's include the caregivers in these stories and in these supports. And let's not forget about them because they need they need a village. Reminds me of a story that touches my heart, you know, of working with an aging in neurodivergent neurodivergent individual and her aging parents. And that's often time even get get pushed even more into the corner because now they don't they're not connected to any school resources, any parent support groups, right? So again, it can be very, very isolating. And yes.

SPEAKER_01:

I only can imagine it makes, you know, the all the work that you're doing with your nonprofit, with the work that you do in behavior analysis, it just makes it all that much more profound and meaningful knowing that you're touching other people's hearts and you're helping many people be able to do what they do every day and have and feel supported and not alone. Because one of the biggest things with neurodivergence is oftentimes you feel like you're all alone. The thing is, as much as it's easy to feel that way, you know, because as somebody who's on the spectrum like myself, you know, it's easy to feel you're all alone. But truth is you're not alone. It's just about finding the right kind of people who who will get you. So that's why I love that idea of having that community, like what you're doing with Inclusie is that you're having like-minded people together who can support one another and create that village for each other.

SPEAKER_00:

Definitely. You know, I realized once the COVID lockdown, everybody was so upset because, you know, we couldn't go in the community. And I got even more upset because I was like, well, you know, this has just started for you guys like during the COVID. But I've worked with families and individuals that that has been their experience. You know, they cannot go in the community because it's not inclusive, because there's more judgment than support. And so that's truly, you know, what sparked my this um this project of of inclusion, that we gotta do better, that uh we gotta talk more about these stories. And I have just been so blessed in touch by being able to learn from the families and individuals that I uh work with. And I've become a whole different new person and and I I feel like I am much better at what I do every day because I I have I have been able to have these experiences and and it's just been something that I need to pay forward. And when you say that you became a new person, what all does that look like for you? So I think uh I see the world um in from a different from a different perspective, uh from the things that to others seem, you know, the little things, you know, I get really passionate about. And I'm like, well, you know, like this is not explained uh, you know, correctly. This is not accessible. Like if I am having difficulties understanding this, or you know, how how are my neurodivergent friends and family accessing this? Like, and so it is just you become more more aware, you become also more empathetic. I think as a as a service professional, and I'd encounter this, you know, working with or super supervising other support staff. And, you know, um just you you just have to be you just have to be present and you just have to be make sure that you are at your best self. You know, you truly need to work on checking with yourself when you're providing services, when you're working with the families. I know it can be overwhelming in itself as a as a BCBA, you know, inundated with a lot of, you know, caseloads and things like that. But setting setting those boundaries for um really the well-being and and kind of realizing how the impact that you can have on someone else in a positive way, but also recognizing that if you don't have those checkpoints before before you step in into a situation, you can you can do a lot of damage. I've observed it, have, you know, and it's it's something that it cannot, it's not acceptable. So it changes you, it changes you in many, in many positive ways. I hope I answered your question in a long way, but absolutely.

SPEAKER_01:

And it seems like, you know, it's done so much beyond even just your career, it's also changed you in how you see things, how you perceive situations. And like you said, you you develop more empathy that way as well. When you look back at something now, like let's say having now newfound experience, having undergone this growth, have you ever gone and looked back at something and now are able to see something from a different perspective that at the time, maybe when you were going through something, you were like, I don't get this, I don't understand this. But now you're able to reflect and be like, okay, this makes sense.

SPEAKER_00:

I have to say, like very early on in my training, I'm a very much by the book person. And so in terms of following, following rules, that's that's what I mean, right? So, you know, I received this training, and okay, this is a specific step-by-step. You're going, let's say you're going to the home, you have to build report with the child for one week, and then you're gonna start implementing the treatment. And I found myself a little bit at unease because part of me, my gut feeling and my want to say, like just like the human experience of me being in that situation, felt like it was not the right time to implement any particular strategy, right? Or let's say in this case, you know, we were working with a young individuals and we had to work on a specific skill, like either, you know, toilet training or placing some demands that were non preferred at that time. And We had just met. I was j we were just playing. And it just didn't feel like the right next logical step to start implementing such a regimental program. And I found myself, okay, well, this is my job, though. I gotta, I gotta do that. And I was not content and I was not happy about the results because then we struggled for the entire session. And so I found myself in the car after after that and kind of questioning, is this correct? What am I doing? Well, but I'm I'm following the program. And I started realizing that well, it's not that I started realizing, but I I was more conscious about this is not just you go in and do an XY job. This is somebody's life. This is another human being. And yes, we are working on teaching some skills, but we should meet them where they're at. We should have a human experience first. And so that I think that was a moment for me that I carry on to it to today, where I might be working with the school and they might have their own agenda, their administration might have their own, you know, and I really try to remind myself to set those boundaries and remind myself we're not just working, you know, these are these are individuals and their lives and their families and and and that that comes first. Yeah. I don't know if this is if a lot of people realize that in the in in in the field. I mean, I'm sure I'm sure there are w when I think there are. Um, but I don't know. Some sometimes I I've been heartbroken in in the stories that I hear, in uh the lack of the human experience, you know. I was like, well, why should it be different?

SPEAKER_01:

And I feel like when you're able to put that spin on human experience and recognize people are human first, it only makes you that more much more compassionate and empathic and understanding that everybody's journey in the human experience is different. I talk about this like in my book, I called it dropped in a maze, and I talk about the maze of life. And one of the things I discuss is everybody's journey in what that maze looks like for everyone is different. Not everybody's gonna reach milestones at the same time, right? It just is different. It's like running a race, right? So, like in a marathon, for example, some people will get to the finish line faster than others, some people will cross the halfway point faster than others. But truth of the matter is it's where you're at in the process, not where everybody else is, but you.

SPEAKER_00:

Right. And and I think that's important also to the level of the expectation, right? Because I think we got to respect everybody's journey and readiness. And I've I've met families where, you know, I might come in with all these ideas and willingness to help and support. And I know if we're gonna see progress, but if they're not ready, then I have to step back and just let them know that I'm hey, I'm here, I'm here to support and check in once in a while, right? But there's I I I cannot force them into a journey that they're not ready to walk. And I think that's um important to not get carried away in the role of supporting others. And I think it's it's um sometimes forgotten.

SPEAKER_01:

Right. You know, a lot of times absolutely it's forgotten that where everybody uh is is in the journey, is in the journey where their level of development is, where the readiness is, right? These things they all matter, but I feel like too many times I feel like we are so caught up in the rat race of the maze, right? It's like we all want to get to the finish line of a maze, but the truth of the matter is it's a journey to get to that finish line in a maze. And I feel like people don't understand that piece necessarily. And I feel people feel that pressure, like I want, I want my kid to be normal. We want to be seen well by what by our community, or, you know, and like they, you know, t times too, you know, you'll see parents where they talk about what looks bad on us, right? If, for example, like if they have a kid who's on the spectrum, right? That's one thing, you know, you'll hear sometimes from parents, right? And I've heard it before in professional settings. And it's it's devastating to think that this is a mindset that they live with, but you know, this is where also having that empathy and that compassion and showing them that there's nothing wrong also plays an important role in that.

SPEAKER_00:

Yeah, and the I think, you know, one of the the feelings, you know, talking about, you know, recognizing you know the the overwhelmed and the and the burnout, but also there's a huge iceberg of of guilt and processing kind of you know, griefing process, right? That it's very circular, it's not it's not linear where it starts and it finishes, just kind of keeps evolving in the journey of of families. And I think it's very difficult to to sit with emotions, you know, especially the emotion of anger, of sadness, of guilt. And it's uncomfortable, but we know that the best path that we can do is that it we need to create space to feel that emotion for a little bit, allowing that space, right? Just like Johnny needs to self-regulate and he needs to kind of go through the feeling and all the whatever different, you know, kind of expression of that emotion, right? And then it has eventually a regulation process. But you know, as as caregivers, we're we cannot feel those emotions, right? It's like, oh, that's taboo. I'm I'm supposed to just carry on. I'm supposed to just be strong and keep going. And that takes a burden, right, down the line. And so there's a lot of a lot of different different complex layers of this caring for the caregiving journey, right? And then we just kind of get to peel it like an onion, you know, whenever we're ready, little by little. The most important thing for me in in these conversations is to just start talking about it, just start having the conversation over and over with the caregivers, with the community, um, and the friends and families too. You know, sometimes it's maybe even more overwhelming to ask a caregiver, right? Like, oh, let me know when you need help. That's not helpful when you say that.

SPEAKER_01:

Because then it puts that pressure on them to come up with an answer of when, and then tell, you know, for them to think it through, like, what exactly do I need help with? Right.

SPEAKER_00:

So that's that's another um, you know, piece of the puzzle that I am trying to bring in as a support system for caregivers where they might have a family member that it's a trusted individual, and then we have co I have conversation with them specifically and empower them and create that awareness of some helpful ways that they can help relieve a little bit of that burder to the caregiver that it's you know caring for the neurodivergent individuals so that we normalize asking for help. You know, we just help take one thing off the load, right? And something as simple as today coming in, I am, you know, sitting in the living room, and you can don't worry about Johnny, go ahead and take a hot shower or your 15 minutes of a little meditation, or sitting in a dark room listening to something, or just you know, quiet time. I mean, that even just that, which seems simple, it just can really change and make such a difference in in a caregiver week that we don't we don't even realize, right? And sometimes it's interesting how the things that we think that are so simple, we just kind of say, like, oh, that's too simple. You know, what do you mean? Sitting in a dark room with the with the you know uh with the blanket, you know, it helps me for my self-care. That's that's really gonna work. It's too simple. It's like, no, try it. Try it.

SPEAKER_01:

A lot of people find that very soothing to be in a dark room with a blanket and listening to maybe some light music, you know, that's a lot of people find that regulating. But what works for everybody is different. Right. Absolutely. So absolutely, you know, whether it's a mindfulness walk or doing meditation, right? Something that's kind of, you know, that's why we there's so many different things that people can do. We just about like finding what works. Yeah. Well, Eleanora, where can people find you if they wanted to reach out to you? And also where can they learn about Inclusive? Is there like a website?

SPEAKER_00:

Yes, they can definitely learn more about inclusy at www.inclusy.org. We're also on Instagram at inclusy.community. And then there's also a little bonus, little resource that we created to basically begin the journey of discovering what are the needs that each caregiver might have. It's called a caregiver balance sheet. It just takes like seven minutes. It's like a little questionnaire that guides you through some question, and it's basically allows you to realize how much energy you are dedicating to your loved one versus energy that you're dedicating to yourself. And it's an interesting journey to go through it because I know that it was for me as a professional. Uh, going through it, it it draws awareness and aha moments to things that I was not so conscious about. It's like, wow, I didn't realize that I was not doing all these things until I put it on paper, right? So uh I know many caregivers find it helpful, and it's a little resource on our website. It's called the Caregiver Balance Sheet.

SPEAKER_01:

Well, thank you very much. This is all gonna be on the show notes, and thank you very much for sharing that insight and giving us a different perspective about what it entails to work with a caregiver of neurodivergent high support needs. Thank you for your time. Thank you for being here. And everyone, I encourage you to go on www.inclusi.org in order to learn more information. And if you are a caregiver of any kind, definitely go and download that worksheet.