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We have to be able to be practical and separate our emotions a little bit. Otherwise, the the tasks and the things become so overwhelming and viewing. Caregiving as a job allows you to do all these things.

 

Caring for ageing parents or other loved ones while working, raising Children and trying to live your own life, wondering how to find the time for your personal health and happiness. Well, you’re in the right place. Welcome to the happy Healthy Caregiver podcast to show where real family caregivers share how to be happy and healthy while caring for others. Now here’s your host family caregiver and certified caregiving consultant Elizabeth Miller.

 

Hello, everyone. Thanks for tuning in to the Happy Healthy Caregiver podcast, which is part of the whole care network. If this is your first time listening to the show, welcome. So glad you are here. This is a show produced every other week to help family caregivers integrate self care and caregiving into their lives. Each episode has an accompanied show Notes page so that we can help fast track you to the resources that could potentially help you go to the website. Happy, healthy caregiver. com Click the podcast menu and then the image or episode number for today’s show.

 

We’re also going to make that easy for you by clicking the link that’s in your podcast platforms episode description. I hope you are thinking about joining us for the self care at Sea Cruise. Or maybe you know somebody who is a big cruiser and would love to join us. We’ve negotiated a great rate. Whether you’re a caregiver or not, we would love to have you join us. We have certain activities planned for caregivers that are optional for you. It is a normal cruise. Beyond that, it’s on a beautiful ship, the Norwegian cruise Line on Aqua.

 

It’s going to some fabulous destinations, including the Dominic Republic, the US and British Virgin Islands and the Bahamas. I hope that you’ll just come and make memories with me and some of the other caregiving co-host that are a part of this cruise. We want you to come for this much needed vacation and leave with the community that you need. You can learn more at bit dot lee forward slash HHC self care cruise. We also still have some sponsorship opportunities available. If you’d like to hear about that, I’d like to thank our episode. Sponsor.

 

Rare Patient for Do you want to earn cash in exchange for your opinion? Rare Patient Voice or R PV helps connect researchers with patients and family caregivers for over 700 diseases and conditions for patients and caregivers. R PV provides the opportunity to voice their opinions to improve medical products and services while earning cash rewards. Rare patient voice helping patients and caregivers share their voices. If you’re interested, join the R PV panel at rare patient voice. com forward slash happy healthy caregiver. I have read two of the three books in the Inheritance Games trilogy.

 

Book one and two were entertaining if you don’t mind kind of young people solving mysteries. It’s not quite like Scooby Doo, because there are lots of riddles and games to follow along and play, which I really enjoyed playing along with these games at riddles. It kind of reminds me of the knives out movie or a modern Agatha Christie. Avery Grahams has a plan for a better future. Survive high school, win a scholarship and get out. But her fortunes change in an instant when billionaire Tobias Hawthorne dies and leaves Avery virtually his entire fortune.

 

The catch. Avery has no idea why or even who Tobias Hawthorne is, and that’s where this whole series of the inheritance games kicks off. To receive her inheritance, Avery must move into the sprawling, secret, passage filled Hawthorne House, where every room bears the old man touch and his love of puzzles, riddles and codes. Unfortunately for Avery Hawthorne, House is also occupied by a huge family that Tobias Hawthorne has just dispossessed. I will link to this series in the show notes so that you can check it out Favourite thing I want to share with you.

 

In this episode, I had a huge problem. If you have been on this journey with a with me since the beginning, you may have noticed it. I had a huge problem with adult acne, particularly in my heavy caregiving season. I tried so many different products and medicines and face washing became a habit for me during this time, and it still is a habit. Today I have lots of favourite products in the skincare category, but in this episode I want to highlight two different types of wash cloth that I like for different reasons.

 

One of them is a dry, disposable face. Towelette. It’s the size XL. I like these disposable ones. Um, just when you want something more than your hands. But you hate to use a a washcloth and have those kind of laying around. I love to pack them with me when I’m going out of town, or I leave them in my guest bathroom for out of town guests to use and suggest using instead of like, removing their makeup on my white towels. So I love these dry, disposable face towelettes.

 

I’ll link to those, and then the other thing I like is something my daughter introduced me to. It’s a reusable fabric makeup remover cloth, you can get an individual, larger size one. the the well known brand there is Magic Eraser, but again, I don’t really like to reuse my washcloth. So I found these individual ones that are just these tiny kind of squares for single use that are great in particular for my eye makeup. These mini fuzzy washcloths are intended for makeup removal. Primarily they, too, are dry.

 

But, um, there’s something about this fuzzy fabric that really gets the mascara and the eye pencil off. They’re double sided, and they come with a little hanging loop, and they once they kind of dry. I just throw them in my laundry when I’m doing the rest of my laundry and they come in a pack of 12. I’ll link to those in the show. Notes.

 

Let’s meet today’s caregiver in the spotlight. Kelly Kellman is a California mom to two amazing boys and a full time caregiver for her son with multiple disabilities. She’s a feature film development executive turned author and advocate for parent caregivers and individuals with disabilities. Her book draws upon over a decade of her parenting experience, caring for a child with multiple disabilities.

 

In this episode of the happy, healthy Caregiver podcast, we talk about why Kelly treats caregiving like a job. The advantages of not having a formal diagnosis for her son, how to secure the right insurance case manager. The unexpected gifts from their son’s service dog and how Kelly mitigates sleep deprivation and strives to make caregiving sustainable. Enjoy the show.

 

Hi, Kelly. Welcome to the happy, healthy caregiver Podcast. Thank you so much for having me. I was thinking about our interview today, and I was like, You know what? I’m going to come into this as a happy, healthy caregiver. And so, like I am showered. I walked the dog on iced coffee and I’m like, Oh, yeah, you’re on top of the day. I call it like when all of those things happening. Oh, my God. Go. And sometimes I’m so far underneath the day and, like, I’ve barely even woken up, so just stay on top of the day.

 

Yes, there is something to be said to about slow mornings. I love a slow morning. Especially recently. Like where I just don’t have to be up and out. So I appreciate you, um, being here and we would have accepted you, no matter how you how you are. Because this is a no judgement zone for caregivers. Like we we gotta you know, we we take it, take it as it comes. I like to start the show off with a little bit of like, a mindset quote for, you know, that might give you something that pops into your mind that you’ll reflect on Kelly.

 

So I’d love to get your thoughts on on this from the happy, healthy caregiver jar. It says time spent with family is worth every second time and family is worth every second. Some days I might not feel that way, but something resonates with me. When I originally put that in, um, I feel lucky that I’ve got a family that I like to spend time with. Um and I think there’s that lens kind of through that this mindset. But what are your thoughts on this Time spent with family is worth every second.

 

I had actually been putting a lot of thought into that exact thing. Um, this past summer I had been working a tonne. My book had just come out. I was doing so much publicity and just nonstop. And I have a date for when my kids finish school and when they start school. So I scheduled an auto reminder or an auto reply to say I’m working. But slowly, I’m focused on being a mom. This summer, I will be covered in silly string, eating Mac and cheese and not putting on shoes for the next several months.

 

So I’ll get back to you. It might take a while, and it felt so good because there was no question of if anybody is gonna think I’m dropping the ball or expectations or whatever, because I was able to set that expectation in advance to really focus on the family time. And this morning, my 12 year old was like Mom. Last summer was really great, and I was like, I know, and I think just that intentional presence going into it. I am going to do that, Um, all school breaks from now on.

 

Yeah, those are great, like, I mean, that’s essentially a boundary right that you’ve set and you’re managing expectations in advance. And like you said, it diminishes the feelings of guilt because you’re like, Hey, this is what’s happening. And this is where I’m focused on, and you’ve You’ve switched your mindset to that and slowed things down quite a bit. And I think there’s a lot we can learn from reflecting on those on those times and be like, uh, last summer or last holiday period or whatever was a wreck.

 

What could we potentially do differently next time so that we give ourselves kind of this space to we know we’re busy. We know we’ve got a lot of things that we’re juggling. Yes. And I know I’ve been listening to so many episodes of your podcast and my ears always pick up. Um, when you say the word sustainable and I’m like that is it What are the things we can do to make life as a caregiver? Sustainable? Not just for those who are receiving the care, but for those who are giving the care.

 

And I’ve been thinking about that so much lately. I have two amazing kiddos. One has multiple disabilities. Um, tell us about Yeah, tell us all about your caregiving situation. Yes. So my caregiving situation is, um it is full time, and it is forever. Um, my two boys They’re presently 13 and 11. They’re amazing. They’re the best of friends. They’re hilarious and weird and wonderful. And our younger son has multiple disabilities. He will never live independently. He will be on his own developmental schedule. He will always communicate and move and operate and experience all the things in his own unique way.

 

Um, his needs, you know, are medical behavioural physical, cognitive, like he’s he is an overachiever. And he’s like, I’m just going to check all the boxes. Cool. We’ll check all the boxes. Um, so my journey as a caregiver you for so many of us, it is an unexpected and just throw you into the deep end of the pool entry into it. And, um, I know many other people in different situations do have ramp up to it. So they’re preparing themselves. I just I had no idea this was coming and, uh, the care as a parent that you are giving to a child and the parenting piece, I was like, Cool, I’m ready for this.

 

But caregiving, as you know, is a job in addition to parenting. And I’ve really come to realise that over the years as my son has grown and developed. But, you know, we are still ordering diapers, figuring out adaptive equipment, making sure the feeding tube supplies are here. Um, figuring out IEPs and school and insurance and future care plans. And it is so much and really owning caregiving as a job in addition to parenting, in addition to everything else has been a big part of my journey and helping me put together the pieces so that I can view it as the job that it is and also enjoy parenting and my kid as its own thing because he as a human, is not what’s hard like.

 

He’s great. He’s hilarious. He loves aeroplanes and bubbles and going to the grocery store. Um, it’s not him. That’s hard. But all of like the the mountains of paperwork and the phone calls like that. Yeah. Oh, my gosh, the endless research. Right? And it’s not like somebody’s gonna hand you, Kelly, like when when this happened. Um, your son was born and be like, Hey, this is everything you’re gonna need to know. Like, just follow these instructions. Yeah, well, and that’s, you know, that is what brought me to write this book.

 

I you don’t half jokingly say that when most parents are given a diagnosis for their child, especially when it’s so young. We’re told to go home, Google and cry, and everybody just kind of waves and smiles out the door. And there is no path forward that anybody’s giving you, uh and we can absolutely change that and it doesn’t have to be. It doesn’t have to be mountains and mountains and mountains of knowledge, but a next step And you know whether it’s my book, whether it’s connecting with organisations.

 

Every state has local parent training and information centres that are run almost always by parents on this journey. Um, it is an easier entry into this world when you have a path forward and most of us are given nothing. Yeah, talk a little bit about that, Like I’m imagining that. You know, there are definitely stages of caregiving and when you receive a diagnosis, it’s like you’re both getting a diagnosis, right? Like the diagnosis of this of the conditions or the multiple conditions and the diagnosis for you is like, Hey, you got this new role, this this forever role of being a family caregiver and I imagine that feels really overwhelming.

 

What were some of the early things that helped you, Kelly? Like what? Thinking back to that early version is how old is your son now? Uh, he’s 1111. OK, so back, back when you, you know, early on, we’re kind of seeing that there was a diagnosis and and things were going on, like, what were what were some of those first steps like, um, So I always preface that with the enormous amount of time that I was doing, all the things that just made me feel worse. And that is what so many of us do, and there’s no shame in that.

 

And if that is where you are And if you’re like I was for years like drinking and like, so I Yeah, so I was I wasn’t drinking, And I’m I’m glad you brought that up, I. I absolutely have friends who have fallen into addiction. Alcoholism, like really negative behaviours for coping. And there absolutely are resources for that. And people need to talk about that. That wasn’t my path, but I have very dear friends. And that was their path. And certainly some during Covid when everything was shutting down.

 

There is no shame there. Um, for me, I was it kind of internalising All of this messaging of everybody saying, basically telling me what a tragedy my kid was and like, Oh, I’m so sorry. I don’t know how you’re going to do this. I could never do this. This is such a terrible thing. I am so sorry. And like like this black cloud just like following you. Yeah, and everybody’s like, You know what? Let me just blow some black cloud your way because yours just isn’t big enough and like that is never helpful.

 

It’s not helpful. No, no. And you know, also the the the superhero N narrative. Also not helpful. Um, my kid isn’t an inspiration because he left the house in a disabled body. I am not super mom because I got the feeding tube in the backpack. Like when we have that side of the narrative, it’s the oh, you’re super so you don’t you don’t need anything and you’re good and like, it’s just it’s all weird and weird. It’s super weird, right? And I think so many people are saying these things to make themselves feel better.

 

And then as caregivers, we are then in charge of managing everyone else’s fragile emotions, which is also exhausting. And so for certainly months. And we started our diagnostic odyssey with our son when he was an infant, Um, after he was born, and months and even years of managing everyone else’s fragile emotions and feelings. And oh, this is so sad. And I it took me longer than I realised at the time to connect with other caregivers. Man, I wish I had your show. And I love listening to different types of caregivers for parents, for siblings, professional caregivers, parent caregivers.

 

Um, because so much of my universe is the parent caregiver universe. But when you’re hearing all of these other stories, you’re seeing what is universal in this, and I really wish I had had that to hang on to early on. Um, you know, with an infant and a toddler, anybody can be exhausted and overwhelmed with things and burnt out. And when you’re adding, everybody feels sorry for you. Um, when you are figuring out medical equipment, when you are chasing whatever you know, fix, solution, cure like there’s there’s none of that my kid is not going to become undisabled.

 

That’s not a thing. Um, and he’s awesome, just as he is. Um, but everybody is like pushing you onto this hamster wheel of you got to do this. You gotta do this. And, um so for a long time, what was I doing? Nothing like I. I was doing nothing also because I thought the really crappy way that I was feeling was forever. Um, we don’t as you know, like, we don’t talk about caregiver stories enough. And so it’s very easy when you are in the caregiver role to listen to the narrative of nothing and create in your head that this is gonna be awful forever. Yeah. Ever. Yes.

 

You’re never gonna feel better. This is it, period. Um, my kid is awesome, like, for real. And what’s his name, by the way? His name is Aaron. Aaron. And, um, you know, this weekend we spent probably an hour and a half at the grocery store getting not very many groceries. Um, for his birthday. The manager of our grocery store made him his own name tag. He wears his name tag. He helps out other customers. He’s high fiving people. He’s dancing for the lettuce. Um, so it’s a pleasant disposition, which he has a pleasant disposition that is, well, it is super helpful.

 

And, um, it it it makes our lives easier to figure out how to best manage because he is comfortable in the world and his default is joy with the world. And I know so many, you know, adults or Children whose bodies, and especially sensory systems and brains, are not comfortable in the world. And we do lots of recalibrating. But it is on a different level than those who are like my kid is not comfortable in the world, that lighting situation by the lettuce that your kid loves.

 

My kid thinks the buzzing of the lights is loud and it’s too bright and the music is too loud. And so we are recalibrating, you know, even how often we need to go to the store. And there is I like that verb recalibrating. It’s a it’s a good thing. It’s like you look, it’s It’s a new day. It’s a new hour. You got to kind of adjust to what’s happening there. Um, were you? I know that, um there was a stroke, Did he? He’s still undiagnosed, right?

 

Like it’s a genetic disorder, but undiagnosed. How do you How do you cope with that? Like that’s that could be frustrating. I see. Like, you know, you want to kind of. And people probably want that, right. They were like, What is You know, how? How can we best support you? Can you? Is there a path for this? How do you cope with that? Yes. So, fortunately, my husband, who I’m I’m so fortunate. He is a true partner in all things. Um, we’re super mellow, and we, very quickly in our son’s life started taking the cues from our son And, um like he is, he’s had his ups and downs, but he is doing well, and we are at a point now where we are not losing any sleep over lack of that overall genetic diagnosis, because it it would be very unlikely that it would impact the course of any education therapies, life plan, any of that.

 

It would be great to be able to connect him with a community of folks who are like him. Um, that would be great. You know, would raise money and support, and who knows? But, um, we have a really great logo, too. I’m sure of it. Um, so it would be great on that hand. Um, people do want answers. Um, who wants answers the most is the insurance company. Yeah, and that’s so annoying. Yeah, it’s so annoying. And also I get it like they’re a business. Um, so so many families have asked me like, Oh, I’m nervous about getting a diagnosis for my kid.

 

And will it be a stigma? And I say, um, it is rare, if ever that you talk to a parent who regrets that it is a path to learning how your child ticks, learning how to support your child. And for us, our son has accumulated diagnoses, including autism, epilepsy, cerebral palsy, cortical vision impairment. Microcephaly has a feeding tube. Uh, communication differences, gross motor delays, fine motor delays. Um, behavioural cognitive. Like he like he just checks the boxes. And, um, you know, within that he’s this, like, vibrant, hilarious human.

 

Um, what I have leaned on to see as an advantage with not having a diagnosis. Um, first, to be honest, if it is a life limiting condition, I’m not ready to hear that. So we’re just gonna assume that it is not, um So in that case, ignorance is bliss, But even more so, um, so many people. And I know you know this and hear this all the time. So many people with disabilities, um, people and unfortunately, educators, medical professionals are very fast. To put a ceiling on, like this is where they’re going to end up.

 

They can’t do XY and Z, so peace out. And I use the lack of that overall diagnosis, no sailing challenge that and say, we have no idea. We didn’t know when we first started down this road if he would ever see or smile or hold up his own head. But he’s doing all of those things. He is walking. He is communicating and does amazing work with his communication device. He loves school and his friends. And so so many of these ceilings, um on anyone are just especially folks with disabilities are so unfair and weird and not ok, um, And when I see people trying to impose that, I’m very quick to remind them that he might be the only person in the world with his diagnosis.

 

So you have no idea. Knock it off. Right? Right. I love to that. You’re like, you’re gonna You’re gonna say that you’re OK? Yeah, you’re OK. Saying that you’re advocating for your family and for for him. Let’s go back to talking about how caregiving is a job. Like, you know, that that’s a That’s a powerful mindset, I think to kind of see this role between being a parent and then this job role of being a caregiver like, now that you would you say, first of all, that you’re Are you in a sustainable place right now?

 

Right now? Yes. From now that could change. It could change. Yeah, And I think that’s good to kind of have that context, like, OK, I think the systems are kind of in place. We we feel like we you know, we know what to expect tomorrow, potentially next week. Um, as far as like, we’re gonna make it. Uh, but how do you compartmentalise kind of the job and the and the parent, Or maybe expand on that a little bit? Yes. So, as you know, it can be so muddy.

 

Um, when I’m having a day. Um, last Friday, I was on hold for 42 minutes to find out if a fax had been sent from one office to the next. First of all, who sends faxes exactly, like get with the times And second of all, like, 42 minutes. And it was a government agency. And so I was afraid to hang up because then I’d go to the back of the queue and the the job stuff like that. Um, the paperwork the phone calls the creating a future care plan for a child who will always be interdependent.

 

Um, when we are able to get practical about those things, we can start to take the emotion away from them, and we can start to tackle them one at a time. So many of us are overwhelmed by all of the things. Yeah, plus the parent emotion or the caregiver of whatever form, emotion. And for me and everybody else like that trips me up because it is emotional to think about. What will my child’s life look like after high school after he turns 18 when he ages out of the school system, This social service system?

 

Um, we have to be able to be practical and separate our emotions a little bit. Otherwise, the the tasks and the things become so overwhelming and viewing caregiving as a job allows you to do all these things. The paperwork is never going to be fun. I’m really good at it by now. And I’m not like, yes, insurance reimbursements. Here we come. That’s my opinion, by the way, Um, not saying it’s going to be fun, but we’re able to say This is my job And there are seasons when it is a nonstop full time, lots of deadlines job.

 

There are times when it calms down, and we really have to hang on to the fact that this is a job and it is not the entirety of who we are, always and forever. Um, it is a big part of who I am and always will be, and disability is not my own experience. I am a non disabled parent of a disabled child and a non disabled child. Um, disability is not my experience, but it gives structure to my experience, and I need to lean into that structure and also find even the smallest things that make me feel like the version of myself that I want to be and I’m excited to be, um, otherwise, it is all job all the time, and that’s burnout.

 

That’s a road to burn. It is burnout. So, I, I we’ll just make this episode All the great things about your podcast. Um, I love how you talk about burnout and you’ve one of your episodes was talking about someone. One of your guests said she had a panic attack. And you said, What exactly does that look like? And for her to describe that and to know specifically what? What does a panic attack look like? What does depression, anxiety burnout look like? Not just like, Hey, you need some sleep, right?

 

You need real support. Um, there was a recent study from the National Institutes of Health that said parents of Children with intellectual disabilities um, the statistics were slightly lower for dads, but I’ll speak to Mom specifically because that is the majority of the parent caregivers primary caregivers. Um, the NIH study said 94% of moms of Children with intellectual disabilities will experience depression and or anxiety. And when I read that, I actually thought that sounds low. I believe it is higher than that. And back to us being surprised by all of this, we should assume that that will be us.

 

Because statistically it will be us. And along with this diagnosis, we can bolster parents with not just Hey, you might become depressed. Good luck. But, um hey, there are very high rates of depression and anxiety in this population that you are now a part of. Here is specifically how to recognise that. Designate someone whether it is your partner, your best friend, a family member, um, to recognise those things in you if you were not recognise, recognising those things in yourself and as best as you can have a path forward through that.

 

And with that, so that when it shows up, you’re not reinventing another wheel that you are too depressed or anxious to re invent. Yes, right. And, well, I Yes, all of like. That’s why I keep kind of going back to this like caregiving B, An egg diagnosis. What if our healthcare system I think I did like a instagram reel on this. But what if our health care system did treat caregiving as a diagnosis and almost like, you know, we’re not diabetic. We’re we’re caregivers. And put that in our chart because we are at risk at a high risk for lots of different things to happen that are health, um, physical and emotional health related things.

 

And so then it’s almost like a checkpoint. Every time you’re, you know, in the healthcare system is like, how is this going? How is this happening? And because I think if we were maybe told that upfront, we would potentially be able to prevent it. Um, and be more mindful of it versus, like, that frog in boiling water where we’re just boiled, we’re just boiled because we didn’t even know that this was, um, an outcome of all of that. So such a such a good thing about the Yeah, maybe we can push push to get the diagnosis, but at least kind of preach it within our circles for sure.

 

And caregiver burnout and having those bullet points and be like, Oh, you’ll get here at some point you will get here and to talk to our medical professionals. Our general practitioners are doctors of all sorts. You know that that is a thing, and it doesn’t have to be that way. I have been fortunate that I have only recently found a general practitioner. I found doctors who I’m like. You are amazing. And it has made me look back and realise I’ve been bringing up symptoms of all of these things for years with my doctors, and the response has essentially been.

 

But you are doing such a great job. You have so much on your plate. Oh, my gosh, you are. You’re just amazing. Like keep it up. You’ve got this, like a like a rocky corner moment. Squeeze the shoulders, water bottle in the mouth. Get back out there. Yeah, it’s like No, no, no, you don’t understand. Yeah, and like Rocky is getting out there for someone to punch him in the face. I know anyone punching me in the face anymore. And when we are telling our doctors that they need to address what we are telling them, you know, in terms of mental health, in terms of physical health, um, whatever that is.

 

And for them to be able to say you are a caregiver, there are many things that come along with being caregiver that can impact your physical and mental health, and we are going to address that together. Once I finally found that I was literally sobbing in this doctor’s office because I was like, This is the first time a doctor has ever said you shouldn’t feel this way every day And I’m like, Well, it’s been a decade and I feel this way every day and she’s like, Yeah, that’s that’s actually not normal Let’s talk about that.

 

It was a revelation. I’m so glad you connected to the health professionals that get it. And if people aren’t kind of understanding it, then maybe it’s we can advocate by, you know, talking to other caregivers in the local area that can recommend maybe somebody who’s who is going to get it. And you’ve got lots of wisdom. Kelly, after you know, a decade of experience in this space and you wrote you wrote a book which is a fabulous title. It says everything no one tells you about parenting a disabled child.

 

Um, what your guide to essential System services supports is the is the subtitle. But that includes II. I imagine some of your experiences, um, in a child with multiple disabilities and your and just sharing. And hopefully like I think, a lot of caregivers where we want to have this alchemy of taking some things that have been really tough on us. Happy, healthy caregiver, your book like a You know, a lot of the folks that have been on the show have done stuff to say This is not right.

 

This is needs to be easier for other people. What can what can people expect to get from your book? Yes, so first of all, very long title. But I felt it was necessary because we need to know what we’re getting ourselves into. Um, it’s weirdly fun. And people are like, Is it strange that I laughed during the insurance chapter and I said Yes, but that’s the point. Um, the book feels like a conversation. And yes, it is the basics on diagnosis, working with your medical team therapies, IEPs future care plans, financial planning, insurance, government benefits like all the boring stuff that we have to do.

 

But it’s like a conversation so we can actually understand and use it. There are letters from fell parents in every chapter I’ve interviewed over 40 experts. Um, the full interviews are in the appendix. There’s bullet points in each chapter, and each chapter is lots of bullet points, lots of lists. You’re getting the basics on everything. You’re getting bullet points of what worked for me, questions to ask yourself and where to begin. Um, I wish it was such a thing. To be like, here is one way to do everything that will work for everyone, and that’s not real.

 

But it would be awesome, especially because we have 50 states in the United States and many other countries who all have their own names of things, all of it. And and I I very intentionally, which was a particular challenge, wanted to make this book applicable to all states, and I’ve talked to people from other countries who found it very helpful as well. Um, because even under the same federal guidelines, states are delivering services and supports very differently, and the systems are very diff different to navigate. Um, one state’s definition of disability and who qualifies might be different than another.

 

My best friend is in Texas. I’m in California and comparing notes, we’ve realised just how different it is. Um So it’s really how to build this journey for yourself, your family, your child for your particular location, disability, family situation. Um, because we need to stop reinventing all these exact same wheels. And I feel like that’s what I’ve spent the last decade plus doing. And here’s your answer to go home, Google and Cry, It’s Oh, you’re not alone. Here’s what I’m gonna need to figure out that I don’t even know yet.

 

And here is how to actually do it and make it manageable so that I can do that job of caregiving and then really back to your question from the jar. Really spend that time with my family and loving my kids exactly as they are. Um, for me, I need to be able to check some boxes and put those practical things in place so that my mind can power down and that we can go. And some friends, you know, have a heated swimming pool and they’re heating it up and we’re going to go there. Great.

 

Let’s go do that. And I’m not worried about missing a phone call or an email. Um, but I can just enjoy my family. Yeah, so good. Well, what a what a great resource that you’re and paying it forward for other other families. You know, one of the tips I got recently, um, for those who don’t know, I’m a sibling care support caregiver for my older brother, who’s 61 years old, Um, but was born with an intellectual and developmental disability. And my parents have did are deceased, but they did a lot of things.

 

I in particular financially to kind of make sure my brother Tom was O is OK, but we are sharing the care and my siblings situation and figuring that out. One of the advice I got recently that, believe it or not, we did not know and have not, you know, successfully completed this task yet, but, um, is to called his insurance and get a case manager assigned. Yes. Is that like, that’s probably seems like so basic to you? No, But here’s Here’s the thing. Some another parent had to tell us to do that.

 

Like, why do we have to ask for it as the an annoying thing to me? Like, can’t they see that we’re have insurance for this person who has a disability and oh, by the way, let’s assign them a case manager like, I don’t even understand why we have to know to do that. Yes. And also know to call the case manager with, um, with your brain on. And when you talk to them, see if you can sauce out. Are they like, I am all for the insurance company and we are going to get this family as little as possible.

 

Or are they saying yes? I work for the insurance company. I am curious about you and serving you as a family. Let’s do this. Um, we’ve had our first case worker. I would cry every time I would talk to her. Um, we called her the robot and she would just read me things from our explanation of benefits. And I’m like, That is unhelpful and a lot of my time. Our next case worker was also a nurse asking questions that I didn’t know to ask and really helped me gain a better understanding kind of big picture of everything and was really an ally in learning this process.

 

So if you do have a case manager, um, if you’re crying every time you talk to the case manager because they’re frustrating you so much. You absolutely should request a different case Manager. Who knew you could even do that? Nobody tells you Nobody tells you like, are there other things like that? You’re like, uh, you know, I I if you were feeling overwhelmed, you know, like, what are the Maybe, like, the other two things that we could potentially really help somebody like Get into a OK. I feel like I’ve got support in making it sustainable. Yes.

 

So I had to read a whole book because no, no one’s talking about any of them. So the super simple things and especially families from the beginning of this journey, every single state has that parent training and information centre and just Google Parent Training Information Centre. One of their tabs is find a parent centre and some states, the larger states especially have multiple centres and they can give you information. They’re often education focused, but they can steer you towards different resources. You need to connect with local people because everything is delivered so differently.

 

I’m in California. Even within my county, things are delivered differently depending on the neighbourhood. You’re in um so look for that parent training and information centre. And when you are seeing specialists, um, know that you are not necessarily going to get answers. We’ve gotten very good at not getting answers in our situation. But don’t leave that encounter whether it’s a phone call or an appointment without a path forward. And don’t be afraid to say to whatever professional in front of you. And frankly, even with educators, I understand this is this is the takeaway from this appointment.

 

What are my next steps? And when you can ask that very clearly it is so empowering because it is just the worst. Failing to leave an appointment and just feel like I’ve just been pushed into the bottomless pit. Yeah, where are we going and what’s happening like And where do I need to put my focus? Because there’s a gazillion things I I could be doing so interesting. Like, what have you learned about yourself, Kelly, through this whole process? Um, I’ve learned that if I get enough sleep, I can do pretty much anything if I’m under slept, which often I am for months at a time.

 

Wow, that I need to just clear everything I possibly can off of my schedule and that I need to lean into doing the absolute bare minimum. Um, epilepsy. It just stinks. It is the worst. We did not see that Come in, and then all of a sudden, we’re in the ER a lot. Um, fortunately, we’re in a pretty good place with that right now. Um, but when you are up with your kid and watching your kid and on seizure patrol for months on end and his seizures happen at night, um, it is really hard.

 

And I’ve learned that I need to recognise very quickly when I am in the hard and to just lean into all my focus is here. I’m asking my husband to deal with food and making sure dinner is on the table. And if that’s peanut butter sandwiches, that’s amazing, because I didn’t make them. He’s a great, um, that I need to pour my focus into the hard thing and not even think about when this is going to be done. But just think about I need to get through to the end of the day, sometimes even just get to the end of the hour.

 

and, um, man, sleep is best. Yeah, um, you also have a service dog? Yes. What was that process like? And And how has that been helpful for you? Yes. So dogs are the best. Um, we’re dog people, so that helps. Um so for our son, we thought about a service dog. Be partly because we’d always had rescue dogs in the past and because his behaviour is unpredictable and can be erratic and noisy. And we needed a dog with a certain history so that we wouldn’t have to, like, have eyes on dog and child all the time, because we have to have eyes on child all the time.

 

So, um, I thought about a service dog, and I looked into different ways that a service dog could have help him. Um, service dogs are different than emotional support animals. Service dogs are specifically trained in tasks to mitigate a disability for a disabled person. And I had thought about, um, getting a seizure alert dog and discovered just how rare um, legitimate seizure alert dogs are, and there are very legitimate ones. Um, and really was thinking about what would best serve our son and talk to many different organisations, which is that’s the number.

 

One thing I recommend is Don’t just look at the websites and fill out an application call and speak with a human to make sure that they serve your needs. And our dog. Hetty, who’s the best, absolutely has tasks and particularly her sensory input commands and her retrieving things when he’s having a moment and throwing things. Um, there there are a lot of tasks that she does, Um, which I was expecting. What I was not expecting is, and we got it through a great organisation called canine companions.

 

They, uh, are are unique because they’re fully funded by donations. So their dogs are free of charge, including all of the training, um, to the recipients and training for the recipients. And they had told us in advance. But I really needed to see this in action To understand the way the world interacts with and reacts to. My kid is so different when our dog is there. Um, he is visibly disabled. You can see he does not look and act and communicate move like everyone else. He is loud.

 

He is squealing. He is clapping. He is like he might startle you if you see us at the mall. Um and that’s cool, because that’s just who he is. Um, when people turn and look and kind of make the, uh face like, it’s just the worst and then people like, Oh, I’m gonna pretend I don’t see you also the worst. And I don’t want the world going through life ignoring my child. And he’s very social. He doesn’t want that with the dog. People turn and look and they see the dog and people light up.

 

People come over and say hello, which is absolutely what he wants. Um, the dog really, um, impacts and facilitates social interactions for him and whether it’s at the park, whether it’s on an aeroplane like wherever it is, it changes the nature of the interaction. It gives a point of commonality. It gives people something to ask him about, and I talk to him about the dog and not just asking me about my weird kid. Um, both my kids are weird, and that’s a compliment in our house. Um, so it’s really a little weird.

 

Yeah, I hope so. Right. In a good way. Um, so it’s really that bridge to the world and also for him. He kind of moved through life as a pinball and all over the place and chasing things. And he wants to run towards a moving car or through the parking lot or through the door, like, No, we do not do that. But when we are out with the dog, it’s so much more fun to stay with your dog than to stay with your mom. And he’s holding the leash and he understands that this is his job.

 

When we are out is to hold the leash and to stay with the dog. And as he’s having a hard time, he knows he needs to pet the dog. And for him, it’s always to just facilitate his inclusion and participate in his community. And it’s been It gives him purpose, too, Like he’s got this we all need. We all need some of that pur purpose. Well, what? How, What a lovely addition to your family, Um, for your for your dog. Let’s let’s talk a little bit with our remaining time here, Kelly, about your we’re going to link to the book and all that so people can get to the practical advice.

 

And you know what used to frustrate me as a caregiver is like, Oh, you should take care of yourself. You should like, what does that really look like? Like, how do you do this? How have you How have you kind of clawed some time back for yourself? And were there any systems that you put in place? Like or And I Maybe I’m making an assumption that you do like I’m hoping you do. Yes, I I’m all about systems. And that’s, you know, the book stemmed from me having a decade worth of templates sitting on my computer desktop.

 

Um, I have the most boring answer to how I take care of myself. But it’s so true. I have to have systems so that I can get stuff done so that I can have the mental space to enjoy a long walk with the dog or taking myself out for a fancy coffee or reading a book or going out with a friend. Whatever the thing is isn’t actually as important as how my brain feels going into that thing. And if my brain is still with that paperwork, I’m not going to be focused on hanging out with my friend for dinner, so I don’t think it’s silly.

 

I think like practical self care is a real thing. Like sometimes I got to get organised my desk or just get this one annoying thing off my list so I can have more headspace and stuff. But I do feel like and all of us aren’t innately kind of organised people. But if we can kind of figure out some of these systems to do that, it does give you more bandwidth and time. Mental bandwidth, physical bandwidth, too. Infuse some other things. Yes, yes. And if you are not the person whose executive functioning skills are already making those lists, block it out on your calendar and just write down all of the things that you need to do that are too overwhelming to think about and then pat yourself on the back for making the list and go do your thing.

 

Yeah, and then the next time block some time off on the calendar. Look at that list. Choose one thing. Don’t do all the things. Choose one thing. Make a list of what those steps are. Lock out some more time do one of those steps and you really can break it down into the small pieces. Otherwise, the overwhelm of everything just gets worked. It isn’t that, I mean, and it also has reminded me of like. Entrepreneurship is also hard, like it’s like a big kind of thing. And that’s my life, you know, as a as a care printer.

 

And that was advice that somebody had gave me is just kind of like write down the things and take one action like Do one. Take one little action in your in your business and your caregiving life and whatever. But that’s how you move forward. And I think then that’s how this anxiety it starts to kind of, um, I don’t want to say, like, go away, because I think it’s always some anxiety in the face instead of it always punching it feels good and fill in so much room for error with any of your productivity things.

 

You know, people ask me, How did you write a book? And I say very slowly, Um, I needed to take months off because I was dealing with medical stuff that was hitting the fan with my son. He’s great. Now, um, but if you are not building in an enormous margin of error for anything you want to accomplish, um, you’re setting yourself up for more overwhelmed, and I get that I get it. Yes, yes. Take Take it. Take it back. Well, I’m gonna ask you a couple questions from the just for you Daily self care journal.

 

Let’s see what we no wrong answers here. Kelly. Um Mm. These are both good. What activity would you were you last doing? Where you just lost track of time? Because you were in the zone going to Disneyland. I love I love Disneyland so much. Yeah, Yeah, it’s just like and they they do a good job of kind of making you forget about all of your your worries And, um and and things like that. So, So fun. What? What? Memories? For your family. Um, OK, last question. What’s the secret passion you have that you, you know, don’t typically share with people like something that just ignites you, uh, making Halloween costumes while I do share that with people.

 

Um, I spend a lot of time figuring it out, and, you know, one year my my kids were these enormous Venus Flytraps. Um, there were robots with all kinds of lights. They were explorers being eaten by snakes. One year it was King Kong was one, and the Empire State Building was the other. Oh, wow. So we get we get pretty intense around here with our crafting. I love it. My, my my mother in law, who’s deceased was like the Halloween. Um, when I think of Halloween, I think of her all the time.

 

So but that’s what a fun thing for you to to kind of get excited about and and coordinate and, um and just kind of get the whole kind of family involved in it. It’s terrific. I love it. What are OK, we’ve got sadly wrap up our show, but what are Is there anything that we left that we didn’t kind of talk about? Um or do you have some advice you want to leave listeners with? And then how do people stay connected with you? Yes. So people stay connected with me.

 

My website is the easiest place to find everything. It’s Kelly Coleman. com, and that’s KELLEY Coleman.com. And my advice for caregivers is that if you want to make this easier on yourself, the sooner you can connect with other caregivers, whether they are parents, Children, whomever is in this caregiving role, the sooner you can connect to others in your situation, the sooner that the job of caregiving and the caregiving life becomes not only easier but able to find true pleasure and meaning in it such well said.

 

I mean, it’s so I wish we could change. Like I find that people wait until there’s a crisis situation to really connect. And I say it all the time like it is kind of to find your community, because that is, we wouldn’t start a job without some kind of training. So we’re kind of getting some training for the people who have lived this. So we’re getting support and validation, um, access to local resources that would fast track that we might not have to, you know, turn over so many rocks re invent the wheel.

 

As you said so well said Yes, I hope folks check. Check that out And I just want to thank you for, you know, sharing so vulnerably to day and putting a great resources out to the world that people can really benefit from because I know that, you know, there were probably times where you were like, What am I doing? I don’t have the bandwidth to do this. But you kept you persevered and you did it anyway. Yes. And thank you for all that you do. Um, again, it’s all about that connection.

 

And you are giving that to all of us. Thank you. Well, we have a fabulous community, So I’m delighted again that you’ve been there and just thank you. Thank you for coming today.

 

Thanks for joining us today on the Happy Healthy Caregiver Podcast on the Whole Care Network. As always, show notes that a company today’s episode can be found on my website. Happy Healthy Caregiver.com. Just look under the podcast menu for today’s episode image and that will take you to the page with the links and information we spoke about today.

 

You’ll also find other resources on the website along with links to purchase the just for you daily self care journal. When you purchase from my website, you’ll get a signed copy and for a limited time free shipping. If you’ve enjoyed what you heard today, consider subscribing to the show on your podcast platform. It really helps other family caregivers. Find the podcast and you’ll automatically receive our biweekly shows in your podcast listening queue. Maybe while you’re subscribing, consider leaving a five star rating and review. Or just simply talk it up on your social channels. Let’s stay connected. I’m on Instagram and Facebook as happy healthy caregiver. And until we meet again, please take care of you.

 

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