Are you grappling with the added logistics of raising a medically complex child? Yeah. Us too.
How do you keep track of countless appointments, medications, treatments, therapies, and durable medical equipment (DME) orders? What resources are out there to help parents and caregivers stay organized and not lose their sanity? Meet our returning guest, Lily Brown from Parent to Parent USA, who shares what she fondly calls "brutally practical tools" and resources to simplify and support the caregiver's life.
In this conversation, Lily shares tips, tools and organizations which have helped her in her personal parenting journey, and which might help you, too. Some of the tools mentioned include:
This list is by no means exhaustive, but barely scratches the surface of the many tools available for those raising children with complex medical needs.
Wrapping up the episode, Emily and Lily discuss the book She is Charlotte, and how Emily transformed her real-time journal entries into this detailed book about her personal medical parenting journey. There's immense value in connecting with and learning from other parents who have shared experiences. This conversation is woven with practical advice, shared experiences, and endless compassion and understanding—a conversation that promises to leave you better equipped for the journey ahead. So, join us, listen in, and remember that you are not alone.
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Are you grappling with the added logistics of raising a medically complex child? Yeah. Us too.
How do you keep track of countless appointments, medications, treatments, therapies, and durable medical equipment (DME) orders? What resources are out there to help parents and caregivers stay organized and not lose their sanity? Meet our returning guest, Lily Brown from Parent to Parent USA, who shares what she fondly calls "brutally practical tools" and resources to simplify and support the caregiver's life.
In this conversation, Lily shares tips, tools and organizations which have helped her in her personal parenting journey, and which might help you, too. Some of the tools mentioned include:
This list is by no means exhaustive, but barely scratches the surface of the many tools available for those raising children with complex medical needs.
Wrapping up the episode, Emily and Lily discuss the book She is Charlotte, and how Emily transformed her real-time journal entries into this detailed book about her personal medical parenting journey. There's immense value in connecting with and learning from other parents who have shared experiences. This conversation is woven with practical advice, shared experiences, and endless compassion and understanding—a conversation that promises to leave you better equipped for the journey ahead. So, join us, listen in, and remember that you are not alone.
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, empowered by hope, is here for you. Though we wish you didn't know this heartache, we're so glad you found us Together. We can walk this journey in hope.
Speaker 2:Welcome to the empowered by hope podcast through Charlotte's Hope Foundation. This is Emily Whiting, your co-host, and today we have Ms Lily Brown, from Parent to Parent, usa, with us again, and we are elated, lily, I think, no, I know you are our most frequented guest at this point and I'm so excited about that and honored and humbled that you have shared your time and your talent and your wisdom with us, and I think our listeners would agree that every time we have a conversation, it's just so enlightening, so much insight and there's so much natural collaboration between Parent to Parent and Charlotte's Hope Foundation's missions, and so it just makes so much sense that we're teaming up and sharing some insights and actually it was really fun. So today's episode is titled Brutally Practical Tools to Simplify your Life as a Parent and Caregiver, and this was actually Lily's idea from the get go. We were getting ready to record the last episode together and she said, hey, what about this topic? And shared these ideas and we said, absolutely, let's get it in the books, let's record it, because we were just talking, lily, before I hit record about how you know, we're trying to strike this balance of really addressing the emotional needs of parents and caregivers in the height of medical complexity with their children, and also the practical needs, the practical tools and tips and hacks and tricks of how hey, that was kind of fun Tools and I've never been able to say that again, anyway and so really wanting to strike that balance, because you know, when you're in the height of need for support, talking about emotions is very helpful, and yet you also need very practical things to get you through.
Speaker 2:So that's what this episode is going to be all about very practical things, and we know you, as listeners, probably have your own set of practical hacks that maybe you don't even know that you do until you hear us list off some ideas and then you think, oh, I do this, this would be really helpful for other parents to know. So we would love for you to share your ideas and I'll share this again at the end of the episode to email us at contact at charlotte'shopefoundationorg, or you can go through our website, email us and I'll, of course, share anything we hear from our listeners with Lily, and we can, you know, definitely share the. You know you can even go on Facebook and Instagram, find us and comment when we post this, to share your ideas, your tips and tricks and hacks, because we can all learn from each other. And and, honestly, all the ideas you sent, lily of you know, hacks and tools for parents and caregivers not all of them, many of them I had not heard of before, so I've got my pen ready. I'm going to be taking notes. It's going to be great.
Speaker 2:So, lily, in case somebody's tuning in and has not heard the previous episodes where you've been a guest, maybe you can give a quick introduction of who you are, your work with parent to parent USA and your personal connection to the mission of care you know, supporting parents and caregivers. Sure.
Speaker 3:Well, my name is Lily Brown. I am in central Pennsylvania. I live here with my husband, david, and my daughter Susie, who's nine years old, and she brought me to the work of parent to parent. She has a rare genetic condition and, you know, in the beginning I felt like I was facing something completely foreign and I was alone and I did not know how to even react and what to do, where to look for help. So parent to parent is here for parents. You know, in the beginning of the journey, like me to say, we've been there too, we've walked the walk, and you know, let us first of all listen to you and let us be there for you, and I think you say it well, but it's, you know, feel with you, not feel for you. And because you know people that have been on this journey, they get it.
Speaker 3:So I'm co-director of parent to parent USA, which is the umbrella national organization. That includes 40 parent to parent programs in 40 different states now, and you know, if you would like to know more about parent to parent, you can find parent to parent near you through our website, p2pusaorg, slash parents. There's a map. You look for your state and find the nearest program. But yeah, it's an honor to be here again. Thank you, emily, and thanks for running with this idea, and I'm curious to see where our conversation goes to it. I know it's going to be really fun.
Speaker 2:I love. I love when we have a very loose outline of what the podcast is going to cover and then we just let it roll, because that's when we have the most organic and fun conversations that I think are probably the most relevant to our listeners. So when we first started out and I think this is the journey of all podcasters, you know you start out with really detailed notes. I think we had three page notes for every episode and it was super thorough and now it's like okay, so this is the two sentence outline of what we're talking about. Ready record, let's go. So that's fun. It's been a fun evolution and also, um, the last episode. So when this airs, it'll probably be, I would guess, episode 32 or 33, but episode 30 went live this week, so we have that's really exciting. I can't wait to celebrate the milestone of episode 50. Around Christmas time. It's going to be great. So, um, okay. So you listed off some fantastic ideas. Lily of brutal I love that term brutally practical.
Speaker 3:Yeah.
Speaker 2:And that's exactly what it is. We're talking. You know, in the life of parenting a child and raising a child, with a lot of medical complexities, of course, you have all the normal and typical, you know challenges of parenting. And then on top of it and I'm speaking, what everybody listening is like yeah, I know, it's all the medical coordination, it's all the appointments, and then it's also the caregiving that's in addition to that, whether it's, you know, feeding, special feeding needs, speech needs, walking, you know movement, whatever it is, and then, of course, if you have any surgeries and in and out of those and recoveries, even yesterday I. So this is going to be a really helpful conversation for me, because I Lily this is funny, oh my gosh I booked the babysitter, I packed the diaper bag, I got the lunchbox packed, got all the medical equipment packed up for the day, loaded up Charlotte, got on the road, almost got to the highway, left the other two kids with the babysitter pulled over, thinking you know what? I should just confirm I'm going to the right location, because sometimes we have to like yeah, exactly, you know where this is going.
Speaker 2:Sometimes, you know, we follow our specialists whichever hospital location they're at that day. Right, and this was a, you know, kind of an anticipated. It was cardiology and we're kind of living three months at a time, getting the the go ahead to go three more months before they check again to see if we need an intervention. So it's kind of a big deal, so, and it's going to be like a three hour minimum, you know, appointment. So I pull over. Wow, I'm like, okay, which, which location am I going to? Cause there's three different locations I go to to find our, our cardiologist.
Speaker 2:Turns out I was going to the right location on the wrong day. No, yep, yep. So I called cardiology and they were like, oh, if we could fit you in today, we would, but it's just not going to work. We're so sorry. So then we had to find another day, because the day that it was scheduled I was not available. And so then I get home and like, well, I already have a babysitter now what? So hopefully some of the hacks we give will help me and all our listeners to address just. I mean, you know, it's constant, constant.
Speaker 2:Yeah, it's all the time. Yeah, management and coordination, and I think one of the best tips is to have a heck of a lot of grace with yourself. Laugh about the fact that you almost drove an hour to an appointment. Really wasn't actually that day.
Speaker 2:So, anyway, what you know, maybe we should list off a few of the ideas that you had and then we can just pick one and talk about it. What do you think Sounds good? Okay, so you had submitted or, you know, just messaged a few ideas. One of them, stages of adaptation. That's one we elaborate a lot more in a episode 30. And so we can definitely share what that is and point you to that episode.
Speaker 2:We talk about parents to parents and the amazing mentoring that you guys provide, and I definitely think we should elaborate on that in this episode so that our listeners know how to find you and what to expect when they connect with you. And then you listed off some fantastic online resources I'd never heard about and I started researching them this morning and got so excited. You talked about personal Kanban, which I had not heard of before you, and so that I'm really excited about, because I'm all about how to organize better, obviously, as I drive on the wrong day. And then AI language models you mentioned, and I'm really curious what that is, because I really don't even know what that is, so it's going to be very fun. So where would you like to start, miss Lilly?
Speaker 3:Well, you know, I think the stages of adaptation, like you said, we covered. So I would encourage your listeners to go to that episode and really all I wanted to say about it is it understanding what parents go through, you know, from the very beginning of receiving a diagnosis to achieving independence for the child. It helps, it gives us a common language, if nothing else, to talk about that experience. So I think it's very useful in working with other people, even working with a spouse or partner or family or anyone that's here around the family to support the family. So that was as a tool. That's the value that I see for it.
Speaker 2:Yes, I agree.
Speaker 2:I equated a lot to the stages of grief and we all learn that in high school health class, but it's very helpful when you lose a loved one.
Speaker 2:And you know, okay, there are stages to grief and I'm in a really I don't even remember what the stages are, but I'm in this really dark spot right now. But I know because I've been taught that I will not be here for forever and there's these stages, and so I think the beauty of these stages of adaptation they're specific to the stages that a parent and a caregiver go through when their child receives a diagnosis and then the life of navigating that diagnosis, and it's so valuable. I mean, I printed out the stages of adaptation and, of course, the link is in the episode notes, episode 30. So you can go print them out and highlight them as much as you want. Mine is covered in highlighter Cause the first time I read it I was like, oh my gosh, this is what I've been experiencing and I didn't have the language to put to it. And now I do. You know, like I've mentioned the black hole many times in previous episodes and the black hole I would say is probably the surviving right.
Speaker 2:Surviving stage. So I guess I gave my own terms to the stages until I knew them. But so it's just very valuable and to your point. Navigating with partners and family members, everybody's going through their own stages of adaptation and so recognizing you might not be in the same stage as they are, and that helps it be a little easier to be there for them and also give them the space they need for whatever stage they're in. So I love that. So it's probably enough on that, huh, unless you want to, okay, we could go on and on about that. We already did. We did, yes.
Speaker 3:You know I don't have. Unfortunately you don't have a magic trigger hack for freeing up more time. I was talking with my husband this morning talking about this episode and he said I think the closest we ever came to it was when we lived in Austin, texas. It's capital of life music, so you could go to a coffee shop on a Saturday or Sunday morning and usually there'll be life music for children, really. So we got to have entertainment for our child while we enjoyed coffee and Wi-Fi and we could plan our week, and sometimes she was into the music, sometimes she was into the gravel and the rocks, it didn't matter, she was occupied, yes, and that felt like something truly special, like a gift to us. So I bring it up just in case anyone of the listeners live in a climate that supports having coffee shops outside and entertainment for children. Look it up, because it's a wonderful way to spend time together and also get things done. If you feel like it, that's fantastic, but there's just like a fun little side note.
Speaker 2:A little tip and trick. Yeah, Uh-huh.
Speaker 3:We have a personal campan I think I'm excited to share, because it hasn't been that long that I myself heard about it first. I think it was at the end of last year. Okay, and I'm not affiliated with anybody, sure.
Speaker 1:Yeah, it's not a commercial.
Speaker 3:It's a good tool. Yeah, there's a book people want to know more. It's a book by Jim Benson called Personal Campan, and I know there's no shortage of books on productivity and advice on how to get organized, but this one, it truly felt different because it's so simple. So it's something you could start today even and you know we're all very busy and that's priceless when it's like, oh, I learned about something and I can start now. Yes, and it won't take a lot. I don't need to run out and buy supplies or organizers. Yes, do it. You know, you can start it with very little and the problem that I think it solves for us and we use it, my husband and I, we are really working as a team. So we have one that we share online in the cloud and we both have access to the tasks and everything on the Combon, because it's just easier if somebody needs to pick up something or something happens. We have it all documented, it's all there, but you don't have to do it that way.
Speaker 3:But it's the idea that you have so many tasks that you know so many things you need to do, some right now, some in the future, and some that you probably don't even realize are coming up, like renewing your passport. You know how do you remember to? Oh, not only does it expire then, but then some countries won't let you in if you don't have six months or three months left. And that's not something, that's not a date that's going to pop up in your mind, most likely. So it's trying to reduce the they call it existential overhead. It's all those things that are in flight at different levels of completion. But if you're not careful, I don't know about you, but for me that could wake me up in the middle of the night.
Speaker 2:Oh yeah.
Speaker 3:Oh, what about this? And that's been up, or I missed that line and it's stressful and it adds a burden and I think to me the value, the best thing I get out of it is a bit more peace of mind. But the way it works, they call it visualize your work. So it's very simple and you can start with little sticky notes. You could do. We use a tool. It's called ClickUp Online or Microsoft Planner Desert. There's a ton of tools that can do it.
Speaker 3:But really the basic way is you take sticky notes and you write a task on each of them. So you start to get to see your to-do list in a way, and it doesn't matter if it's a big project or a small task. It's something you need to do. So it's on your mind. We'll get it out there. So then you get an idea of what you have to do and then the other.
Speaker 3:So then the idea of the Kanban is to organize it along a board with columns, so you could define however many columns you like, but basically there's things that are up next, things that are in progress and as you move towards the right, then things that are completed, and once you get to see things accumulate in the columns you get to get a feel for what's coming up and what you need to prioritize and what can maybe wait. So the second rule or second way to approach it is they say limit your work in progress. So it's pick the top two or three things that you could really move now and those get to go in the column. That's in progress and that's what you're focused on. And I think it cuts down on that sort of anxiety where you're like where do I even start? I've got so many things to do and sometimes your brain just keeps going between one and the other and you're just an audience, you're shuffling.
Speaker 2:Yeah, this was me yesterday. Oh my gosh. Yes, well, I got home from this appointment we didn't go to. You're a bonus baby sitter. Now what?
Speaker 3:do, I do.
Speaker 2:I know.
Speaker 3:And I'm like.
Speaker 2:I have five hours that I could get so much done, which I know most listeners are like oh good for you. You have five hours with a baby sitter. That's amazing and, yes, it's true.
Speaker 1:But when?
Speaker 2:you are organized with your to-do list. I knew I needed to. There was probably two hours worth of things I needed to do for Charlotte's care, and guess how much of it I got done? None of it, Because my brain was like, well, I should do this, I should do that, I should do this, oh my gosh. And then next thing I know I'm doing all these piddly things that really aren't going to move the needle because my brain can't focus.
Speaker 2:So I'm just like well, I'm going to organize these medical supplies over here and then I'm going to answer this email over there and I'm going to message Lily about tomorrow's podcast and stuff that needed to happen but shouldn't have been on the priority for today, while I have a baby sitter list. Oh man, I remember I got to the end of that time and the baby sitter left and I was like that was not a waste of time, but it sure felt like it because I could have been so much more structured.
Speaker 2:So I'm loving what you're saying here and I love that it brings like you can bring in a partner on it too. So if we're talking specific to the care for your child we've talked about in past episodes, it's often where the primary care of that child's medical management falls on one parent, and that probably is out of necessity in a lot of cases. However, making sure that it's not on that one parent 100%, because nobody can manage that and the other parent needs to have input on the care that's being given and not just updating them at the end of the month being like, by the way, we're doing this Right. So I love what you're talking about here because we can kind of whether the significant other is involved in the day to day, at least they can see what's going on and weigh in when it matters most. Or you can say, ok, this column is for you. Or, of these 10 sticky notes, what are the three you're going to take? Yeah, exactly.
Speaker 3:And if you do it online, like we do, you could assign two people, so you're going to be the lead on that one, I'm going to take this one. You can upload attachments or pictures. So if somebody needs a little bit of context or earlier this year I had to unexpectedly fly back to see my family and friends Well, the conman's there, everything's documented. So if something happens with school or with an appointment, at least there is, the basics are in place for my husband to be able to say OK, I know what's going on. And it's a huge relief to be able to take the time when you need it and not have to worry that things are falling apart, because you know you've got it and you can pick it up when you come back. So that gave me peace of mind when I really needed it too.
Speaker 2:I love that. I'm even thinking how amazing would it be. Of course, this is reaching for the stars here, but wouldn't it be amazing if, for those who are and this is opening a whole big can of worms but those who have the opportunity and accessibility to a care coordinator within the hospital system or within insurance or whatever, to be able to do a board like that so that you're kind of on the same page of what needs done, what needs moved forward, or whether the social worker is helping you organize what needs done, whatever whoever that is.
Speaker 2:If you have that person, that's a whole nother round of episodes. But that would be amazing, because sometimes you have somebody within the hospital who's running with organizing things and you're doing things and you're not quite on the same page, so that'd be great.
Speaker 2:Even yesterday, while I was driving around waiting to determine if I could actually still get cardio appointments in that day or not, I was thinking you know, we have a whole week of appointments four hours away from home in September and there's a couple appointments I'm pretty sure have not gotten booked for that week that need to be, and so you know, just all that head space. I love what you said, the existential overhead of like, oh my gosh, you know, the medical equipment company sent me the wrong size catheters so I gotta go back and email them. And, by the way, I didn't schedule that follow up with the surgeon. And, by the way, we still need to do that eye patch and I keep forgetting to do it two hours a day. So I need to put that in the calendar. And blah, blah, blah, blah, blah, blah, blah, blah. Your brain just keeps going, right.
Speaker 3:It does and yes, and the great thing about it, you could, you know you could decide something is recurring. So oh, exactly like I said, in a year I need to remember to call to get an appointment with the ophthalmologist, because you can't make those appointments a year in advance. Yes, I don't know why, but apparently people forget and they want you to call it closer. So then you know it's in there and for me it's a little, it works a little bit better than having just a calendar reminder, because if a day gets busy and the calendar reminder gets missed, then you know I might forget about it. So this, at least it's all in one place and I could see it.
Speaker 3:But yeah, in another column we've added kind of custom but it's waiting or pending, because there's so many things we try to push and it gets stuck somewhere. You know you're waiting for a call back. You're waiting. Well, you know, still sit on the phone. Yes, you're waiting for the person to pick it up or whatever it may be, but at least it's there, it's in the holding column and you're not gonna forget about it. You still see it and if you need to nudge, you know that, you know it's there. You have notes on when you pushed it, when what happened. So you know it's. Maybe in an ideal world you wouldn't have to deal with all of those reminders and nudges, but since you have to, at least there's a tool that can help you day to day manage it all.
Speaker 2:Yeah, yeah, I would say you know, in my previous life, prior to having a child with you, know all these medical complexities when my role was more project management. It was great practice and training for what the life of a parent and caregiver is.
Speaker 2:Because that's what you're doing your project managing. You're managing the appointments, you're managing the therapies, you're managing, you know, and you're also providing the leadership oversight of like, do we really need that therapy? Yes, do we, you know? Do we need to get a second opinion? All those different things. So the headspace can just be immense. So I love this is helping kind of make it more concrete in my brain, and hopefully listeners too, that you really do have a job of project management. And so finding a system whether it's Kanban am I saying that right, mm-hmm, okay, whether it's that, or you find something else, and you know this is nudging me to do the same. We've talked about it, ashlyn and I, my co-hosts with Empowered by Hope. We've talked about needing to come up with a system that is like this, where we can really collaborate, because I seem to function okay with lists and that's not really how her brain works. So we gotta find a way that both of our brains work right.
Speaker 2:And so but I think, just stopping to recognize that, yes, as the parent of a child, with all these complexities, we are project managers, basically, and so how do we find a project management system that's gonna help us do it? So we're not waking up at 2 am when we have precious slim hours to sleep and our kids actually asleep, so we should be asleep, yeah we're both like yeah we get it.
Speaker 3:Oh, yeah and yeah, then that's you know. Like you said, there's many other systems. That's one that you know. It doesn't have complicated rules, it doesn't require much to get going, but whatever works for you. Yeah, because better than nothing you're, better than the anxiety that comes with the overwhelm.
Speaker 2:Yes, I love that.
Speaker 3:But yeah, and I think in the book they even recommend doing it for both your personal and your work altogether. So you could really see, because they're I think their argument is in the end, it doesn't matter if it's for work or for yourself, you need to do it. So it's gonna be on your mind. For me, I separate it just because you know my work I don't share with my husband and the personal stuff we share. But however, system works. I think it's interesting to think of it as well. It is work in a way. Yeah, you know?
Speaker 2:Yeah, absolutely. You could even do a little color code system where, like, yellow sticky notes are always for work and pink or for personal or whatever.
Speaker 1:Exactly.
Speaker 2:I love that. I'm just a list maker. I've list everywhere, literally piled all around me, lists everywhere, mm-hmm. And the other thing which I'm not adjusting, go ahead.
Speaker 3:Well, no, I do the same, and then I have to go back to the list and say no, no, no, remember, put it in the click up or put it in the notes yes, because that's where you're gonna see it, but no, I think the last kind of circling back to the stages of adaptation.
Speaker 3:You know, when we talk about the last stage, which is separating and doing all the little things that are going to help your child become more independent, there are things that we no need to happen Some today, but some it's around 14 when you start the transition, some it's around 18 that you need to look at. You know, do you have paperwork in place for guardianship or you're considering supported decision making or other alternatives? And that also, sometimes, if you get triggered by something you hear in the news or something you hear someone talk about, you're like, oh, I need to research it. Okay, well, I slept a few years, but if I put it in a card somewhere, I keep a reference, maybe a website, a link, something I know I can go back to it later and I don't have to lose sleep over it. So it could be even, you know, fairly long term things, but it keeps it organized.
Speaker 2:I love that. That's fantastic, yeah, because it's those kinds of things that you can find yourself, you know. You finally get the kid tucked into bed and then you're sitting on your phone scrolling researching something that's not relevant for another three years, and your brain's starting to freak out about it.
Speaker 2:when, meanwhile, you really need to be focused on the fact that the G-tube needs help tomorrow or whatever, I don't know. You know, yeah, so that's really fantastic. So thank you for sharing that. And also, you listed off some fantastic online resources and I am curious about them, so I'll just let you elaborate Uh-huh.
Speaker 3:Well, I think those were. You know other ways that maybe sometimes you don't have to recreate the wheel or you can make life just a little bit easier. I think I listed the parent training and information centers. So those are specifically well more specifically for special education. So if your child needs services for special education or they have an individualized education plan, then there are about hundreds parent training and information centers throughout the country and they could. Yeah, it's, some states have several, depending on the size of the state, but yeah, and they have really good resources. They'll help parents of children and youth from birth to 26, so very wide age range for education and development. But you could go to them. Usually they'll have trainings that you can attend and they also have I think they call them family resource specialists. So if you need, if you have very specific questions about special education, which can be, you know, very complex to navigate, yes.
Speaker 3:And it's a system and it gets into legal territory when you get into IEPs. So those family resource specialists are great. They could help you answer very specific questions. Sometimes I've had one say do you want me to come to the meeting with the school so I could be your advocate there, and do you do it all for free? Yes, right, wow. So they have a wealth of experience, expertise and they're ready to help you always get you know. If you don't speak to them the same day, you always get a call back within 24 hours, my experience at least. But it's fantastic because you don't have to, you know, try to do it all yourself and understand it, because some of the you know some of the procedures and the manuals and the things you read online, it's, it's. It could be convoluted, it could be difficult, and but they could tell you yeah, this, this is what I've seen happen, this is what you could reasonably expect. Yes, it's, you know, check it out. If you have one near you, I'm going to Help with special education.
Speaker 2:Yes, and all of you listening in, you know if your kid is of school age. Many are going to have children with IEP. So for those who don't know what an IEP is, it's an individualized education plan and or program plan. Program plan, I think, yeah, um, and it like you said it's. I mean, at that point we're talking about state funding for supporting extra needs for the child in the school system, and so it becomes legal and they're very legal documents and handled very much that way and it can get really complicated really fast and there's a ton of people involved, yes, which can be really overwhelming and you don't know who to turn to. So this is really fantastic information, parent training and information centers. So are those through the state or like through government, or are they? Is it a not for profit? What is you know? I think it depends.
Speaker 3:Okay, there's definitely government funding and then locally some they're different types of organizations I think Interesting. Yeah, it's just a. It's such a relief when you call and you you get to speak with someone who gets it and yeah, oh, no, no, no, no, don't worry about it. You know, sometimes it's like you said you get to the IEP meeting with the school and sometimes it feels like you're on one side of the table and you have 10 people on the other side. So, having someone that will help you understand what's going on and what, what you can reasonably request or expect, yeah, that's fantastic.
Speaker 2:Our last IEP meeting ended up breaking down into years. It was nobody's fault, it's just. You know, it's always so emotional for me and I'd be curious if others you feel the same.
Speaker 3:Okay, yes, yeah, especially in the beginning. I feel like you know, after a few years you get to a point where it's a little bit more stable and, if you're fortunate enough to be in the same school, you get to know people better. But in the beginning it's very emotional and sometimes it feels like, well, you know, obviously the focus is is on where your child needs help. So that's already you know. It's only one side of the child that you're looking at at that point, but it is yes, it is very, very emotional. I think sometimes they zap your energy for the rest of the day. Oh my gosh, I have to remind myself okay, we have an IEP meeting that day. I'm not going to schedule anything too involved after that, because it's a lot.
Speaker 2:You are a wise woman.
Speaker 3:Yes, Well, you're learning, I guess.
Speaker 2:Yes, yeah, even yesterday. You know, of course I'm gearing up for this appointment. That wasn't going to happen, but I knew. You know cardio appointments, we almost always walk out with some pretty big news whatever it is. So I'm like okay, just prepare yourself. You're probably going to be useless the rest of the day. There you go. You know that's all right, it's fine. And IEPs I have found to be very much the same. Yeah, and I think the hard part is when you go in not really knowing the lingo and the way things you know.
Speaker 2:So our example would be and I don't even know the right words to describe it but basically at the end of our meeting there was talk about putting her needs in one category and I burst into tears because I was like, yeah, but her needs are so much bigger than this one category. It's this whole medically complex child, and when she's at school for these hours you might only see the effect on speech, but at home we're seeing the effect on everything else.
Speaker 2:And to think that it's school. The only thing that we need to care about is her speech is very short-sighted, right, and so it ended up being a great conversation and they were able to re-categorize her needs to better fit.
Speaker 2:But I'm thinking, man, wouldn't it have been nice to have known what were the right words to use to help describe what I was trying to communicate, because here I am kind of blubbering of like, yeah, but I don't think that's really going to get her the niche, you know, and they're like, okay, okay, we'll figure it out. So anyway.
Speaker 3:that's the entire thing. It's not easy when you're in front of the team to say no, no, no wait, can we look at it again? And then we explain what I see so well done.
Speaker 2:Yeah, and you know, from all these standardized tests, you might only see this as the need. But I at home, see all these other things happening. So it might not be the need right now at school, but in six months, when we're still functioning off the same IEP, it's probably going to be a need Exactly. So it's all interesting, so that's fantastic. We will look up some links and try to put those in show notes so that you know listeners can reference that. And then you mentioned something called Project Sunshine. What is that Project?
Speaker 3:Sunshine is a. It's an organization that I think they say they bring joy and play to pediatric patients and it's just a wonderful organization because they will, you know, put a smile on the child's face, but not just the child, it's the whole family. At this point that gets lifted, and that's what I love about them is they include the whole family and what they do. But they have different offerings. They're inside some hospitals bringing, you know, kids to kids to play. But they also have some online programs once in a while and we were fortunate enough to hear about one they did recently where it was a magic show oh fun.
Speaker 3:And so children who, you know, might have medical complexities, they may not be able to go out to a magic show. Or for my daughter, if she did, unless she was really upfront, she might not even know what's going on. She couldn't see it. Or for some kids it might be overwhelming. But when it's online it's somehow strangely more accessible and they made it work. It was wonderful, it was a good time, the kids were super excited. I mean, I've never seen CZ jump up and down so much and it's just giving those opportunities to children who don't always have them. It was like a wonderful gift, and you know I again, I'm not affiliated with them, but I think they do fantastic work and I want people to hear about it and benefit from it too.
Speaker 2:They almost sound like, would it be fair to say they sound similar to a child life program, but they're not specific to a hospital. They're not hospital employees. Okay, I think so.
Speaker 3:Yeah, but yeah, and I think they do. Yeah, it's like they call it teleplay too, so you don't have to be in a hospital, but yeah, it's a lot of fun.
Speaker 2:That's very fun. When we were in the hospital for the last surgery, they had a like a news channel on the TV that was specifically run through the hospital and they had programs all day long for the kids and Charlotte loved that. That was the first time we were in a hospital that did that and so, you know, when she was feeling well enough we could turn it on and we could do singalongs and they read books.
Speaker 2:And you know, the therapy dog appeared there and then he came to visit her in her room, which was really cool, so she got to get on the TV and then in her room and you know, they did like these little activity kits where the child life specialist dropped off the kits and then they did this program on the TV, and so I guess I'm thinking how amazing that was, and I'm sure Project Sunshine, you know, would be amazing too, along that same vein. Yet, yeah, that's awesome, what else is in your arsenal? You have such incredible tools. It's funny. I have research to the nth degree, obviously, to shut up, set up charlotte's hope foundation. We didn't want to repeat anything Anybody else had already done, and so we have research and research, and research. But what we keep finding is there's so much out there that you could research never and never find at all. It's amazing.
Speaker 3:Yeah, and I think the best, best tips are the best things have received. Or from another parent. You know someone is like, hey, have you heard of this? Or even with them Finding a therapist that would take our insurance yes, somehow my Pediatrician didn't know, but sure enough. Another mom at school is like, hey, have you tried this place? So that's why I'm sharing today, because I'm hoping people, you know, maybe it triggers the thought, maybe they share something back with us and you know, in Through everything that's shared, someone would find something that's helpful. Yes, absolutely.
Speaker 2:And you and I have talked at length how we both really envision, never trying to repeat or replicate what somebody else is doing but bolster it, you know, promote it, help it be more accessible. So we've envisioned someday maybe we can create some kind of library or resource where parents can just go in and put in. You know Three little facts about what they're looking for and it populates the top three organizations that fit your need that we're gonna collaborate on it someday?
Speaker 2:yes because no parent has time to sit for hours to find the resources. You know? No, the worst thing.
Speaker 3:I think, is when you get a big folder and it's like, here you go oh thank you.
Speaker 2:It's like when you go to the hospital for surgery and you hand, they hand you that big packet with all the details. Do you confession time? I don't read them.
Speaker 3:Can you humanly read them oh?
Speaker 2:My gosh. Yeah, it's just. I mean, it's all.
Speaker 3:It's all in good, good intentions for sure, but oh well, yeah here your song is another fun one if you haven't heard about it, but it's fairly new nonprofit organization and they work with some writers and musicians to help kids tell their story, write their own song, and it's, you know, children and teens with complex needs or serious illnesses, and Sometimes they go to them depending on where they are. Sometimes it's also via Zoom or, you know, online calls, but helping the kids put words on their stories, whatever the story maybe, and then either the kids sometimes participate in the recording or they have, you know, professional people doing the vocals and the instruments and creating a beautiful song that the kid could keep and share and it's just so much fun. If, if you want to look them up, I think it's here your song org. Check out the YouTube channel and it's probably in the top played videos but there's a little kid called Zippy.
Speaker 3:He wrote a song. He hit his song as noodles and that's easy's favorite song ever. But you know, just fair warning if you listen to the song it'll be stuck in your head for about a day or two. If you have your children listen to the song, I I don't know. I.
Speaker 2:Don't know what can happen. It might become the new twinkle, twinkle little star.
Speaker 3:It might be on your playlist or on your request list forever, but it's a lot of fun and it's it's great to see kids have fun. You know, kids be kids and and again have being able to share that with their, with their siblings or with their families. Everybody gets to be a part of it.
Speaker 2:I think it's a wonderful thing. That is fantastic. Oh my goodness, I love it. I'm gonna go listen to that as soon as we hang up From this recording and they are.
Speaker 3:They're really willing to work with kids. Even you know kids live Communication devices or all sorts of needs, so so it's really cool.
Speaker 2:Oh, that's wonderful. Oh, my gosh, I can. Charlotte is so Music oriented, yeah, so I could see her really loving that. That'd be really fun.
Speaker 3:It would be sweet.
Speaker 2:Yes, I might have to enroll her and just see how the process works.
Speaker 3:Yeah well, share the song with us.
Speaker 2:Okay, yes, that'd be fun, oh, my goodness. So and then you say a AI language models. Is that what I'm reading here?
Speaker 3:Oh yeah. Well, you know, that's Something I think will evolve and probably become obsolete here in a few weeks.
Speaker 2:Oh, okay.
Speaker 3:No, I'm not sure actually, or maybe they'll be better, new and better, more creative ways to use them. But you've, you know, things like chat, gpt, barred, all those AI tools. For me, they come in handy when it comes time to writing Letter to school or writing an appeal to insurance or something like that. And maybe it's part of you know, I'm not a native speaker of English, so that helps me to have a framework and to have things that I know sound good. Yes, but just the other thing it does is, if you've, you know, feed it a rough idea of what you're trying to Say or to appeal, or whatever the case. Maybe it could come up with a template for you really quickly and I could take the emotions out, because it's hard to To write something about your child I don't know about you. For me, yeah, the hardest thing, yes, where you feel like this is not right or this is what she needs.
Speaker 3:Oh, yes, so can relate to that so doing it and you know, of course, being very careful, like not feeding the the language model, personal information or sensitive information. You can be very generic, but then it gives you something to work with and if you're very busy, if you have something you feel strongly about and you want to share, it could be a way, I think, to do it rather quickly. And you know there will be work to go through. It's not gonna produce the perfect letter, for sure. You're gonna have to customize it, but at least you're not staring at a blank page, yeah, and saying, oh, I don't even have time to start. You get a start, you. So now you know the task is halfway done. You have to clean it up, you have to customize it, but it it could be a time saver. It could be a way to Maybe even start something you wouldn't otherwise start. That's great. So I actually I don't use any.
Speaker 2:AI software, which would be short for artificial intelligence. So I actually use the notes on my phone and it's really handy, because I don't recommend this, but while you're driving, if you have, because that's when I have all my best ideas. So then I pull up my notes and I can turn on the Voice to text, right, and then so I'm not looking at my phone, I promise people my hands are on my, my wheel. But I can just be like you know this letter that I've been formulating to send to the head doctor of XYZ department and I can voice it and I write the whole thing and, like you said, it ends up coming in pretty jarbled in some areas and instances. But you knew what you were trying to say. Yeah, and then I can, when I get home, email it to myself and clean it up in a Word document and it takes, you know, lickety split. And it's funny how, when you sit down At your desk to write that letter about the IEP or about you know how your child needs to fit in this clinic, even though they don't qualify within the parameters or whatever you're trying to advocate for, when you sit down to the blank piece of paper, you're just like yes, and how do I do this without being so emotional? Because clearly, the reason I'm even to the point of having to write about it is now, I'm emotional because my child doesn't have the services that they need, right? So to be able to just voice it and say the letter and then come back and clean it up is so much easier.
Speaker 2:So it's funny, we apparently do the same thing, same thing, different way. Yeah, we use that all the time. Some of the best ideas are in the shower and while driving. Yes, probably because it's like the only time where you're not busy actually caring for the children. Right, that's true, one gets to wander a little bit. Yes, have some space. Yes, and same with, I think, for so to do less, and I don't I don't have a great.
Speaker 2:Like I said earlier when we were talking about con bon, I don't have a great approach, but I use my notes a lot on my phone where you know I'll be off doing something and I realize I'm not we didn't get that follow up appointment with the surgeon and and, by the way, this is top of mind because it's the reality of what I need to do today, by the way, we got sent the wrong catheters, got to call the BME company, you know that kind of stuff and so keeping that, running lists, you know, just verbally texting it or writing it to myself on the notes, and then when I get home, being able to, I get the kids tucked in the bed really fast and be like, oh right, okay, I can count the catheters really fast, or whatever.
Speaker 2:So finding whatever your rhythm is to keep the, the, the things that are floating in your brain, when you have the second for them to float, to get them out, capture them, yes, get them out of your brain quick. Yes, I love that, let's see. And then parent to parent, of course. So we've talked about it a little bit, but I think it's definitely worth pausing to share a little bit more about the great resource that you are, and so you have support parents and you have what do you call the parent? What are the terms. There's two different. It could be parent, a referred parent. There we go, so the need help that calls in.
Speaker 3:And then the support parent is the volunteer, who's been trained, who's been there and who's been able to sit down, you know, whether in person or with a phone with the referred parent and guide them along. Yeah, but yeah, it's. I think that mentorship, you know, usually it's about an eight week period where we suggest parents have at least four points of context, because the research showed that that's what's effective. You know, you feel supported, you get to a point where you can actually uncover things and really move forward in those eight weeks. But beyond those eight weeks parent to parent you know it's still there.
Speaker 3:So if you're plugged in with your local parent to parent, they might have trainings, they might have other opportunities for you to, you know, learn new skills or even contribute your experience, share your story and by doing that you're part of this community. In, you know, I think it's what we mentioned earlier you're around other parents, so you get to hear about the cool things happening, you get to hear about the resources out there. So it's worth staying in touch with the parent to parent program beyond the mentorship, just year round, and being on their newsletters or their Facebook groups or however you like to stay updated. Yeah, yeah, we have a local chapter in Cincinnati who I've met with and that's been fantastic and definitely eager to stay in the more.
Speaker 2:I am also a trained support parent and I love the materials that you share in that training, because it's it's just so educational. Not only does it help you process your own experience, but then it helps you know how to be there for other parents. You know you're never expected to be the one with the answers or to even provide any medical guidance, right, but be that listening here to be the wisdom who's been there, done that to you. Know when, like one example of a parent who I was supporting was asking well, you know I could go to this hospital or this hospital for the same surgery, which one should I go to? And of course I'm never going to answer that question, know, what I can do is just ask the questions of like well, how far they both from your house, where is your support system?
Speaker 2:which which surgeon do you have the strongest relationship with? Is there a difference in the surgeons or surgeries, you know? And then just let it go. Let them figure it out, but helping them think about the things that, from having done it many times, I know these are the things that are going to matter for your decision. You know, wow, so there's just so many. And just getting coffee with somebody and relating about the emotional weight of it all, or I'm having this, I'm in the hospital and I'm having trouble with this one nurse, but I don't know what to do, and so you can be like, yeah, you know what, I've been there too. So have you talked to the head nurse? Have you talked to? You know, whatever? Just empowering through all those little conversations.
Speaker 3:Mm-hmm.
Speaker 1:So we're starting to get quiet.
Speaker 3:Yeah, no, it's great to hear that You're feeling what we're hoping to achieve, which is the support flowing both ways. Right, You're supporting someone, but you're also getting something.
Speaker 2:Oh yeah.
Speaker 3:Whether it's reflecting on your own experience or learning something new, and that's wonderful.
Speaker 2:That's what we're here for and you know it's really. Being a support parent is really powerful because when you've gone through the challenges you have as a parent and a caregiver, you want to. Obviously the goodness of your child is worth it all and also using that really hard experience to help others is so healing. I mean, that's how Charlotte's Hope Foundation started. I'm sure that's how parent to parent started. Was the parent long ago who said you know what? We gotta make this better for other people? And so as a support parent, you don't have to go out and start your own not-for-profit to get that sense of satisfaction that you've turned what you've gone through to help others. That's true.
Speaker 2:Which is really incredible. So you can find your local chapter through going through p2pusaorg P2pusaorg yes, okay, wonderful. And then you just find your state and find your local organization. You can either become a support parent or you can ask to be a referred parent, and I've been both and it's fantastic. Any other resources you can think of, or hips Trying to say tips and tricks, tips and tricks.
Speaker 3:There are many, many things, but I really would love to hear from listeners what works for them, if they have anything to share with us. And well, you know, one thing we haven't talked about, but as far as something that will give you more inspiration, maybe a fresh perspective or at least hope, obviously she is Charlotte, your book. That is a wonderful resource for anybody who's just starting in their journey and the people around them. I keep saying that. I know I keep saying that, but I think it's to me. It's very powerful if you're part of a support network for a parent who's in the beginning stages with their child. So check it out. She is Charlotte.
Speaker 2:Oh, thank you. Yeah, she is Charlotte is a book I wrote and it's about my journey as the mother from the time of learning the well, we didn't even have a diagnosis, so that's the wrong term, but learning my child had anomalies from head to toe through the time of coming out of the NICU, which we always laugh. It's a 400 page book and it barely starts the story of Miss Charlotte, but it's all from the perspective of the parent and we have these what I call addendums, but basically little call outs in most of the chapters, that kind of. So the story is very much in the moment of what I was thinking and feeling at that time. But then I kind of step back as the writer and the author to say, okay, but five years later, now that I'm writing it, this is what I know.
Speaker 2:That could be helpful for you if you are the parent or caregiver going through this or if you're the support person. These are things to think about and it's interesting that you say it's a really good resource for the support network, because I would bet probably 75% of the readers of she is Charlotte is individuals who are the support network, because oftentimes the book like, if you're in the hospital, you're in the height of trying to save your child's life or navigating treatments or whatever. You might not have the emotional or mental capacity to read anybody else's story that's true. So either most of our readers are either kind of a little bit further down the line and ready to process somebody else's story, or they are the support system who really is eager to better understand what this life is like as a parent of a child with medical complexities.
Speaker 1:Not saying it's not relevant.
Speaker 2:if you're in the height of things. It absolutely is, and please go check it out. It's on Amazon. I'd love to hear your thoughts if it's like whoa that is a lot to take in in my state of mind or not, but it is really seems to be a great resource for those who are more on the outskirts wanting to look in.
Speaker 3:Yes and wanting to help, and I think it gives great ideas on what is helpful. Yeah.
Speaker 2:So yes, absolutely.
Speaker 3:But can I ask how? I'm always impressed when I read the book. How did, what was your record keeping system like? How are you able to tell the story in so much detail? Because when you're in the thick of it, I don't know, sometimes it feels like my short-term memory gets shot when I'm under a lot of stress and I mean I can't imagine more stressful than what you went through. So how, how?
Speaker 2:Good question. Well, my memory is really bad to begin with, so that doesn't help things, but I've always been a prayer journal person and so that really helped because I was able to go back through my journal and read and it put me like, even if I couldn't remember all the details of what happened that day in the NICU, that journal would put me right back in that headspace of what I was feeling, thinking, doing that day. And then I could pull up the my chart you know our chart from what we, you know what was actually happening from a medical standpoint and compare the two and it would trigger all these emotions and thoughts and experiences that I totally had buried. So, truthfully, each chapter I wrote one chapter a week and it took me a year. So there were a few weeks in there that you know it didn't didn't get a full chapter done, but each chapter I would write it on a Monday or a Tuesday and then it would take me the full week to emotionally and mentally recover to be able to address the next chapter.
Speaker 2:Because it was, honestly, it was probably like the best therapy program out there, because the weight of processing what I like had to unearth to be able to truly take the reader to that place was heavy. So it was very healthy, though it's incredible. Yeah, so my system was I wrote down, you know, key moments that I thought were really pivotal in the story, and then went back through my journals and through the chart and kind of filled in the gaps and then just kind of broke it down into what I thought were key chapters and then just picked one chapter a week and started chipping away at it, wow. So I've been trying to apply that same logic to what we're, you know, all the things we're working on with Charlotte's Hope Foundation, because it can get kind of like the Kanban conversation of medical coordination. It can get so overwhelming of like, well, we want to grow our website and we want to this and we want to that.
Speaker 2:We want to, you know, reach more listeners with the podcast and all these things, and then you'd get nothing done, like yesterday, because you're just so overwhelmed. So making the list and prioritizing it is definitely key.
Speaker 3:Wow, Well, thank you for sharing. I had no idea, but it always struck me and I was I'm glad I could ask.
Speaker 2:Oh, I'm so glad you did. Yeah, it was a fun process, very rewarding, very grueling and emotional, yes, but one that I'm grateful that I did so, and thanks for reading it, and actually Lily endorsed it. On the very first page you can see her endorsement of the book, which is awesome. So with that, I think we've given you lots of ideas. I will make sure that our show notes include a lot of the links so that you can check these out, and I'm sure we. I mean there's so many other ideas out there and we covered a lot of ideas in different areas. You know what would be helpful, so we'd love to hear from you. Reach out to us at contact at charlottehopefoundationorg with any ideas you have for brutally practical tools that'll simplify and enhance your life as a parent and caregiver of a child with medical complexities. Or reach out to us on Facebook and Instagram, and we cannot wait to hear from you.
Speaker 1:You are capable, you are equipped and you are not alone. Together, we can do hard things for our children. If this episode connected with you and you want to hear more, be sure to hit the subscribe button. We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at charlottehopefoundationorg. And, last but not least, if you know of someone who could benefit from this podcast, please share.
Speaker 3:We hope it bears.