Hello and welcome to the podcast. As the twinkle of holiday lights begins to shimmer, the weight of coordinating a festive season that embraces the needs of our special children can feel like a tangled string of bulbs. This heartfelt episode invites you into our circle of mothers, including the candid voices of Brooke, Erica, Francesca, and Rachel, who each bring to the table their own patchwork of challenges and triumphs in parenting children with special needs. We're cracking open the conversation on how we craft a holiday that's as inclusive as it is joyous, sharing stories that will wrap around you like the coziest of winter scarves.
Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/
Coaching Opportunities
Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me
Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join
Hello and welcome to the podcast. As the twinkle of holiday lights begins to shimmer, the weight of coordinating a festive season that embraces the needs of our special children can feel like a tangled string of bulbs. This heartfelt episode invites you into our circle of mothers, including the candid voices of Brooke, Erica, Francesca, and Rachel, who each bring to the table their own patchwork of challenges and triumphs in parenting children with special needs. We're cracking open the conversation on how we craft a holiday that's as inclusive as it is joyous, sharing stories that will wrap around you like the coziest of winter scarves.
Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/
Coaching Opportunities
Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me
Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join
Welcome to the Special Leads Mom podcast and, for many of you, welcome back. Today is one of my favorite style of episodes. It is a community huddle episode and I love that term because I love community and I love sports. So I feel like the huddle is the image that I have of us moms linking arms, literally gathering around in a circle and being like okay, guys, what do we do? What's our next play? What do we do to make all this work and to actually have it work for ourselves and for our families and for all that we care about? So that's what this episode is about, and because this episode is coming out I think it's December 20th I was like I don't want to throw anything real complex or new to my community.
Speaker 1:Let's talk about Christmas, let's talk about what's on our minds and like what's coming up, and I know that everybody doesn't celebrate Christmas, but there's a season, right, everybody's out of school, there's a lot going on. Even people have different relationships to the actual holiday of Christmas. The essential question that we're going to kind of discuss and address today in this community is given the unique challenges that we have, we're going to go over those. What do we want to create, what do we want to create in this season and how will we do it, and so, clearly, we're not going to have, you know, a prescription to follow, but I think the idea is that I want everyone to walk away from this episode inspired, maybe even a little ignited, of oh yeah, like I didn't think I could do that, didn't think of this idea and going to be a little bit of a brainstorm, but also really connecting that you're not alone if you're experiencing some of these common situations that we find ourselves in as mothers of our children.
Speaker 1:With the idea of huddle, I actually have a number of guests here, and so I'm going to give a minute to introduce everybody and then we'll get into all of the many questions that we're going to look at today. All right, we're going to do some introductions, we're going to go simple and I'm going to ask everybody to share their name, the location I think it's fun to kind of see the span of which we're talking from and then a really quick snippet about, maybe, age and type of disabilities. Just give us a picture of what is it that your disability looks like as it relates to you parenting and living, and some of the struggles you may have. All right, let's start. Brooke, will you introduce yourself first?
Speaker 4:Yes, my name is Brooke. I live in San Diego and I have one child. She's 13 and she was recently diagnosed with a very rare genetic condition that we're still trying to process and learn about. But the way that kind of manifests in her life is autism, intellectual disability. She's nonverbal, so that's my daughter.
Speaker 1:Thanks so much for being here again. All right, Erica.
Speaker 3:Hi, I am Erica and I live in very rural Washington state, very, very rural. I have three kids. My son, jack, is my middle kid. Oh, he's five and he has a very rare genetic syndrome called William syndrome. We did not know about it when he was born, but we found out when he was about two and a half. That disability for us is intellectual disability. He has a lot of developmental delays. He's also incredibly social. So I'm sure, as we'll discuss the holidays, while there can be some challenges, it's also quite fun to see his level of excitement and engagement for all of the holiday parties and things.
Speaker 1:Thanks for mentioning that Detox. I think it is very applicable, as I mentioned, for how our children's disabilities engage with all. That is holiday. All right, Francesca, will you go next?
Speaker 5:Hello, my name is Francesca. I live in very rural Maine so I love it. It's the last part of the state. Yeah, so we're in Mount Chase, maine. It's very, very northern, very rural. I have a four-year-old little girl. She just turned four. She has a cerebral palsy and epilepsy secondary to a brain structure abnormality with a very, very long name, so I won't put you guys through that. But that is my daughter. She's my only child.
Speaker 1:Awesome. Thanks so much for being here, and Rachel.
Speaker 2:Hi, I'm Rachel. We live in Northern California, in the Sacramento area, and we also have one child, my daughter Audrey. She's turning nine next month. She has a very rare genetic condition which causes a global delay. She too is nonverbal and also gets very excited for holidays, but in probably a very different way than Erica described. So that is a big challenge for us. So I'm sure we'll get into some of that. Yes, we will.
Speaker 1:And I realize I always forget to reintroduce myself. I always assume everybody knows all the things, and I realize you probably don't, and so I parent four children ages six to sixteen, and Levi is my child, who puts me in the category of special needs mom. He's a survivor of multiple brain tumors, and so I think it's interesting. You know that it's like a little rare to have many acquired disabilities, and so his disabilities are all brain based and range from hemiplegias, which is a physical disability, to visual impairment, to medical complexities that have to do with not having a pituitary. It's called panhypopituitaryism Long names.
Speaker 1:We all have these like spelling quizzes every day when we fill out forms right, and the thing I want to mention here is he also has a condition called hyperphagia, which is simplistically described as an increased appetite, so he's going to have food seeking behaviors that fall way outside of anything you probably have ever seen, and it even surprises me to the point that I see it. So in our home we have all of our food locked, or I should say we have most of our food locked, because we just got a new refrigerator, which has caused us some challenges in getting the new locks in place, and so I'm sure, as y'all think about holidays, I think the two things that I was as I was preparing for this episode came to mind, like, what are the big things? I'm like you know what? It's the two G's, it's gatherings and gifts. It's more than that and God, oh, I got it.
Speaker 1:That's for me, that's not for everybody but gatherings right, and so there's so much as it relates when we have children that fall outside of the typical society's norms, that gatherings present so many different challenges. So thank you all for introducing yourself. The first question before we get into some of these challenges that we're going to go through, some of the common ones, I want us actually each to contemplate this question and really, ultimately, it's what is really important for us this season. I'm going to ask all of us to unfocus our eyes on our children and to refocus them on ourselves. Like, what is it that you want to experience? You know we all watch the Christmas movies and there's this idea of magic out there and maybe some ideals, but when you really sit and think about it, as we're recording this, it's December 12th and so we're like we're in it. So what is it? What comes up for you when you think about what do you want for this season? Francesca, go ahead.
Speaker 5:So I think one of the things that I love to focus on and try to make my ultimate goal for the entire season is just calm and peaceful, like I love to be relaxed. This time of year where we live the days are a lot shorter, so it's getting dark around 3.30, 4 o'clock and the sun comes up a little bit later in the morning, and so I like to just take this whole time to just really focus on just being in the home, being calm, doing our little things, trying to take off some of the things that are typically on our plate so a lot of appointments and therapies and things like that we kind of draw back in a little bit, we cancel or we reschedule so that it's not quite as frequent and we just try to all be together and just make it a lot of time about reading and watching Christmas movies and things like that and just kind of being calm and relaxed at home and not a lot of chaos. That is the typical day-to-day kind of thing.
Speaker 1:Totally right, which is funny because you don't picture holidays like the whole. I'm picturing like common movies of, like hustle and bustle, like scrambling around. That's not exactly it. I love that you have identified that and actually that's when I was thinking about this question for myself. I didn't necessarily have those words, but I think that is identifying. For me, it's like this break from norm and it's like stepping outside to do things I wouldn't ordinarily do, Like I do more baking, or at least I want to do more baking. I think that slowness and calm, I think, is really touching into what I desire in this season, and I think for me I'll add there is this piece of togetherness. There is a huge value of gathering with all different groups of people during this season. That, to me, makes it really special and it's what I really love. Brooke, go ahead.
Speaker 4:I think what I want for me is to feel included and you know, I guess, to say what you also said like that feeling of togetherness. I want to just feel like I am part of a family. I'm sure, with all of us Christmas looks different, but with the holidays it does tend to get a little more emotional and, you know, isolating. And I think that's the biggest thing that I'm wanting to feel this year is that we are not forgotten because it looks different.
Speaker 1:Beautiful, thank you.
Speaker 2:I think for me, I would like most to be present at the things we are doing, regardless of if it's parties or you know, just family time or, specifically, home time for me, and to not worry about the future of things or maybe what we're not getting to do. So just being present.
Speaker 1:That last thing you put in there. I think it's such a good little point of it's not the things we're not getting to do. Nice and Erica, did you have anything?
Speaker 3:Yeah, for me, kind of what Brooke said to feel included, and I have to give a shout out to my friends. We've done four years in a row now getting together to do a girls Christmas and we just did that last this last weekend and that is one of the. I think has become one of the most important parts of the holidays especially before it all really gets crazy is spending that time with my girlfriends. And of course, I have to give a shout out to our husbands too, because they hold down the fort at home and that wasn't always very easy, but I just think that doing something for ourselves too, not taking ourselves out of the equation as should we need to experience togetherness.
Speaker 3:We need to experience the magic of the season as well and not be the ones that create the magic like worthy of that too, and whether that's doing something with your girlfriends or something completely different, I think it's really important to remember that we need to have a full cup going into the season, and that may look different for each of us, but that's been something that I've done now for the last four years. Jack is five and so for the most you know, most of the time that he's been alive, I've been having these day long Christmas parties, exchange gifts, we make dinner together, and it has just become something that really kind of charges my batteries going into the season. I really, really look forward to it, and I think it's important that we all recognize that we need to do that for ourselves.
Speaker 1:You had me at day long. I didn't catch that at first, that this was a day long party and I was like there you go. That's what we're talking about, and I'm like is it too late to start planning something like that? I don't think so. I think I could pull it off.
Speaker 3:You've got time, karen.
Speaker 1:Thank you, it actually makes me think of that. There's a group of friends from high school that I still get together with every year and we're getting together this Thursday. I'm so excited and we don't always exchange gifts, like it's very informal, but I'm like I really want to get something this year. So know to self, go do that right now. Thank you all for sharing, and I think it's so important to ask ourselves and answer that question ahead of time, because this happens all the time, no matter what context I'm meeting and working with people in.
Speaker 1:We tend to jump ahead to the how and get stuck on the how before we even identify and get clear on what. And what is it that we want? What do we want to create? And so we kind of have a little bit more clarity now. What do we want?
Speaker 1:And so now we're going to kind of shift into the how and we're going to look through the lens of some of the common challenges, and so we're going to start with food issues, and somebody put the idea in here there's a lot of spectrums here, so in some cases kids don't eat at all, being that they're a G tube fed or another way fed, and so it's kind of awkward to go to like a restaurant and not eat, or this is the experience that has been sharing with me and then I shared a little bit earlier about food management is like a whole category in our house and parties are really hard, like really, really hard, because my son can actually become quite physical if something comes between him and his food that he really wants, so really takes a lot of what I call offense, like being really proactive, to win that game, and you know we lose that game most of the time.
Speaker 1:It seems like, what do you guys experience, if anything you don't have to share in this category, if it's not an issue for you when it comes to like food issues as it relates to this holiday experience, go ahead.
Speaker 4:So Lily has eaten the same exact thing probably since she was like three years old. She's now 13, so her diet is very limited. We traveled for Thanksgiving. This year. Christmas will be at our house this year.
Speaker 4:We don't have, I guess, maybe some of like those deeper struggles of, say, like G tube fed but always making sure that she has what she needs to eat, even if that means bringing food somewhere else. Something that I struggle with is holiday meal times, lining up with when Lily eats, because it makes me feel sad when you know, like if Thanksgiving is at three, lily doesn't eat at three. So I want her to be included in the meal, but it's not when she eats. Or you know, like at Thanksgiving it was a weird time and she was eating popcorn and I was just so happy that she was sitting there eating with us. But that's really kind of where that resonates with me is just like making sure that we have exactly what she wants to eat and timing. I want her to be included. So sometimes that gets rough when we have these big meals that are not at normal times.
Speaker 1:Is it safe to assume that if she's not eating she's not interested in being at the table in any capacity?
Speaker 4:Yeah, even when she does eat, it's like she's kind of recall her like a grazer, like she'll eat some and then leave and then she'll come back and eat some. It's like she doesn't sit down and eat a full meal, like all in one sitting. So I guess when we're around people that are very close with us, they understand that. But being around maybe more extended family and they're like, oh, she still eats the same food, you know. Like those kinds of comments we just have to like field it and like, yeah, she still eats the same food, you know. And I think sometimes, like the holidays kind of put a spotlight on the differences. Even when you're with your family, it's like, oh yeah, like yeah, she still eats the same food she ate ten years ago or no, she doesn't want to sit down at the table and eat with us. That's kind of where our struggles are with food.
Speaker 1:It just that there's certain things I think people have such a hard time understanding the idea that she's still enjoying the same foods that she did when she was three, or, in my case, like I think it's even and I kind of have to own it myself like even for me I see it every day it's incomprehensible to think about the things that my son does with food, like it just in my human brain has I have a really hard time keeping it like actually that this is the reality that we live in. So I think that can be helpful to offer other people like compassion, like okay, like it is really hard to get, but then also offer ourselves I don't know what it would be, but to just acknowledge like it's really hard to have people really not understand, like really what it's like of you know, even a little comment of like she's still eating that, yeah, she is. You know, like that's, that's yep, rachel.
Speaker 2:Yeah, I have a very similar experience that Brooke just said, and then we also have the physical mobility piece of it as well. So if my daughter is going to eat with us, I have to have something for her to sit in that is appropriate, which is getting hard as she gets bigger. She can't graze because she's not independent walking and so she would probably prefer to do that, but we have to pretty much sit her in something strapped and it's a whole thing. We also have the time issue. That was brought up as well.
Speaker 2:Audrey very much eats on a schedule.
Speaker 2:I find myself trying to plan around the event, so I always feed her before the event, you know, or plan to do it after, and both in between, and then if there's like a dessert or you know a snack that she can have there, I'll attempt that. But that makes the seating issue even harder. So, depending on where we go, we're very secluded and she can't be by herself, so either myself or my husband, literally physically, is removed from the table as well. So not only does she not get to experience the togetherness, but we don't either, and that's something that I've had to let go on like the emotional side of, because Audrey doesn't care that she's not eating at that moment, or you know what that food is, but I do.
Speaker 2:I grew up my mom is full Italian. I grew up very traditionally, like you know, family dinners and big holiday meals and food is, you know, definitely social gathering for my family, and so that's been really a big challenge for us. And then I always have to bring even if I know where we're going and there's a chance that there might be something there she can have I always have at least her preferred snacks, if not an entire meal with me.
Speaker 1:So, yeah, definitely I'm picturing, as you know, describing the Italian kind of food experience, and I don't know that personally, but I just have this visualization of like a long, long, prolonged, really enjoyable, relaxing meal and that is kind of the entertainment of the night, if you will, because most of the people sit around and talk and enjoy and all those things and like that model just does not work for our children, therefore it doesn't work for us. And so, erica, we're going to share something on the food topic.
Speaker 3:Yeah, we're very similar to what some of the other ladies have said. Jack doesn't eat very much and, unfortunately, the foods he will eat is becoming less and less. He's getting pickier the older he gets and, like Brooke said, he kind of eats the same thing all the time and right now, food is a big part of our life because he's in school and we're working with the school on what he'll eat. He's not eating things at school that he would normally eat at home. For the holidays. It's a lot of planning ahead for just Jack's menu alone, like the other ladies have talked about, and I love to bake and cook around the holidays, and every time we go somewhere I spend a ton of time planning ahead, and it's just one more thing that I have to do that makes that enjoyable activity stressful.
Speaker 3:Like I love baking and cooking and coming up with all this stuff, but then I also have to cook ahead of time for just Jack alone.
Speaker 3:He's not going to eat what we have there and somebody might say, oh, won't we have ham?
Speaker 3:No, he'll have ham if it's on a frozen pizza, but he won't have ham, and so it becomes just another layer of something that we have to do ahead of time.
Speaker 3:And the other piece that can be really difficult is Jack has ADHD and he will not focus on more than one thing, and usually whatever is the most exciting and entertaining thing will take his attention. And so even if he's hungry, even if it's time to sit down and eat and I know he's hungry if there's something else he'd rather do, if there's an activity or a toy or something on the TV, he will not sit and eat and he won't eat until he is so hungry that it's time for him to have a meltdown. So just knowing that is coming and we have two other kids that we're trying to kind of shuffle between it just makes for potentially a really stressful environment for my husband and I, and then he's going to have a meltdown and we also have two other kids to handle too. So the whole eating, the whole food thing is such a big part of our lives right now, and I think the holidays just kind of make it worse, or?
Speaker 1:it can.
Speaker 3:I think there's ways around it, but it definitely has a potential to be something that just adds so much stress.
Speaker 2:Mm-hmm.
Speaker 1:So given. So now we're going to turn to like okay. So here is this challenge that we have that food is interwoven into celebrations at holidays, and yet it doesn't work for children in a way that it works for other people. So I guess the question is, what do we say? What are ideas that we would say again from this offense, or kind of proactive I guess, is a better word for it like proactive, like okay, like, given that X, y and Z doesn't work, and I want to be included, to be present, to have this sense of peace and calm. What do I see? Like what could move me towards that? And so I'll open it to y'all to see what comes to your minds and also what has worked for you, like things that you have done to work. Please share those as well. Go ahead, rachel.
Speaker 2:The things that have worked is lowering, like, my expectation of her, basically, like needing to be at the table and bringing anything that I know that she will eat, depending on the time. It's hard for us because we can't, just because of her limitations Physically we can't, you know, hand her a granola bar on the way on the drive home, and because she hasn't eaten much, you know, and she's hungry, we can't do that. She can't eat alone in the car, she can't eat alone ever. And so I get a lot of comments from people like friends over the years that you know, everyone in the holidays, kids are running around, maybe nothing but chocolate on Christmas day, like, and they're like, oh yeah, my kids do same, same same, like they've only eaten chocolate. And I'm like it's not the same.
Speaker 2:My kid, the only, like, if she did eat chocolate, I like force hand fed, like her, like a tiny bear, you know, like, and actually Audrey loves chocolate, but she would have to be like sitting in the sea and it would have to be the right. It couldn't be on something that she didn't recognize it can. You know? All these things so kind of tricky when you get people and they're trying to relate to you, but it's not the same.
Speaker 2:It's not that I'm worried that, like my kid can go without one meal, sure, like everyone can you know. But no, she's on a routine. She eats at a certain time, same thing with Erica, like Audrey's blood pressure, kind of like we can notice, you know, the highs and lows when we don't feed her in that time scheme. The thing that I'm trying this year, so to be determined if it's going to work, is we're hosting Christmas Eve here for my immocide and I did it at a time that is not a meal, we're just doing heavy hors d'oeuvres and so it's like starting at 2pm and so like I can feed Audrey her normal lunch before and I think that people will be leaving by the time I need to feed her dinner, and so if she eats anything when they're here a snack or a treat or whatever that's fine, but I'm not even planning on that at all.
Speaker 1:Brilliant. I love that. Plus a lot easier to host. So there's a double win. I'm thinking about. Okay, like I said earlier, like the entertainment often is like the meal time, people sitting and eating, I suppose like people conversing around appetizers is very similar. Is that kind of what you envisioned for the gathering?
Speaker 2:Yeah, I do, and you know we're doing some, you know, like I said, like heavy appetizers. So there will be some. You know some things that are more substantial. But I'm telling myself and I'm envisioning like, if she's happy being with the cousins and everything in our main rooms, that's fine. But I'm fully intending to, at some point during the time, she'll be in either her room or the player in the loan with like a tablet that we can just like check on her intermittently, especially when it gets too hard. I think we're going to get into gifts, maybe a little bit too, and I definitely there's something that goes along with that as well.
Speaker 1:So I love the intentionality that you brought to this so well done, and having my little brain start to turn about like, oh okay, like good idea, I see what you did there. Who else would share in the category of kind of what you're thinking about trying or what might work, or how can we can close this gap between the challenge and what we want?
Speaker 3:Something that has worked for us with Jack especially now that we have three kids has been an hour outnumbered is allowing people to come in and help. I mentioned this earlier Jack loves everybody.
Speaker 2:Nobody's a stranger.
Speaker 3:So even at bigger events where there's extended family and somebody offers to sit with him while he eats, even if he's only eating chips, I let him do it. He doesn't have some of the other issues that, like some of the others have talked about. As far as eating, he can feed himself, and I really tried to let go of a lot of my expectations. He's going to graze all day and he might only eat chips, and then I'll bring him a bunch of food that I've prepared ahead of time, like some frozen pizza that you can warm up in somebody's microwave, and I've also just tried to find some peace in that. He's going to eat when he needs to eat, and if we're headed for a meltdown, then my husband and I are going to handle that.
Speaker 3:We might talk about that later, and sometimes things don't go the way that we hope that they would, but ultimately I've just tried to allow Jack to experience the day and the way that he's going to, instead of forcing him to sit and eat and then go play like all the other kids are going to do. He might be playing while the other kids are eating. That's often the case and for a long time it was so frustrating to say Jack come sit down, please come sit down, it is not playtime, you have to sit at the table. That in itself caused a giant scene and my husband and I just let go of that. He's going to do what he's going to do. He'll eat when he eats, and even if it doesn't look the right way to other people, I don't have capacity to care about that anymore, and it's just allowed me to have a lot more peace about the whole situation.
Speaker 1:I love it. It's like, instead of asking Jack to conform to the day, you're having the day conformed to Jack, and I think it's really flipping the model. And, yes, we have to learn to let other people's thoughts about that come and go, because those aren't really helpful to our situation. Brooke, are we going to share something?
Speaker 4:I relate a lot to what Erica is saying. It's just kind of like this is what works for Lily, and I don't really have the capacity to care what other people think of that anymore. That's a lot of mental exercise. For me, though, you know, is to kind of just shut out comments, you know, shut out the pressure and just let it be what it is, and it's really draining, but I find that when we do just that, just let her do what she's gonna do. If she's gonna be in the other room when we're all eating, that's not what I would have wanted, but she's happy, which means that I can be present and enjoy the time, rather than trying to force a situation that's just gonna make everyone upset.
Speaker 1:Totally, and it's interesting because, again, I have this opposite problem of it's actually the too much food and too much eating. That is the challenge for us, and it's interesting because it's been kind of a moving target because we had some medications that were helping. They're not currently available, so one of the things I'm doing is praying that that becomes available, because that would be a game changer. Probably not in enough time, but one of my friends, jessica Patay many of you know her. She's amazing. We are break together, go check it out Free, amazing organization and her son also has hyperphagia. She has shared with me that they have very clear and distinct eating times, so like there's food out where she's able to really manage it at a high level and then she puts everything away. And this is one of the reasons why she prefers to host at her house, because she has a little bit higher degree of a ability to do that. And I'm thinking, you know what? Maybe that's what we need to do this year, cause again, like last year, it looked a little bit different than it does this year and I'm thinking that will allow myself and my husband to actually just be able to rest for the times that we're not managing the meal time, cause it is like you have to have a very high level of vigilance, because it is amazing how well the Vice Executive Function System works when they're suit involved. Where is this the rest of time? Because his ability to plan and execute is remarkable. So I'm thinking that I'm just gonna have to actually really decide ahead of time when our food windows and go all in and manage that to a high degree and then really be clear and have those boundaries for myself and that will help the whole family.
Speaker 1:Okay, let's move on to a different area, and this is activities and festivities. So, like going out to parties or to, like I don't know, the classic I go sit on Santa's lap, if people even do that anymore and, erica, I think you had brought this up. Okay, like we're somewhere, our kids clearly not conforming or needs more attention, like how do we handle this? And so I guess I'll just highlight some of the common issues you guys can add in anything that you think I've missed.
Speaker 1:Firstly, I think one of the challenges can be is not participating in activities that you would wanna do, like your other children would wanna do, but like this particular child not interested, and obviously some of you have only one child, but I think this could apply to, like your wider family of what they wanna do and other people don't. And this is something where my husband and I are still figuring out, 14 years in, is how do we both have a good time at a party and manage our son at the same time? Like we don't do very well sharing the load, because it's either like well, usually it's nobody like we both get distracted and then it's just not good, and then setting boundaries with family and like actually being clear about what doesn't work. So what other issues when it comes up with activities and festivities, did I not mention that you might wanna add? Go ahead, brooke.
Speaker 4:So I struggle with when we're hosting, we kind of discussed, like you know, the kids are out of school, that whole thing. When Lily's out of school which I'm sure is very relatable to most people her routine is so off. And when we have people coming into town and they're gonna be here for many, many days, it's like what are we gonna do? You know? Because I know with Lily, like we can't just sit home and chat all day, like I would love to just sit and chat and catch up. Nope, that doesn't work. We have to keep her busy, get her out of the house, do things, you know, and for us, like I know Rachel like will relate to this so much Lily likes to do very specific things. We do them all the time, you know, and we've just accepted that that's what it is.
Speaker 4:That may not necessarily be fun for other people and so I have to kind of process how are we going to like entertains people that are coming to visit us in a way that works for Lily but is also fun and engaging for them, when she's already overstimulated because there's so many people here and we're out of routine, it's so much, and it makes it really difficult to look forward to going into the holiday season because all of that feels so stressful to me. I want to go and do these typical, like Christmasy things. I want to go experience those for my own self. I want to experience those with my daughter. She doesn't care one way or the other. I want to experience those with my family. But this year in particular, I'm really struggling with like how do I make all of this make sense in a way that works for Lily, for me, my husband, my parents, everybody, and it's hard.
Speaker 1:Especially when the value that you're connecting to is to feel included.
Speaker 1:So I can see why there's some tension, because it feels like to me, like included, feels like together, and so maybe that's where to continue pondering of, like, how can I be included if I'm not together? Is there a possibility there and I know that we'll answer that right now, in this moment but something to really kind of think about, like what that would look like Anything else that I missed to add to kind of a challenge list of activities and festivities. Oh, go ahead, francesca.
Speaker 5:So Emery's got developmental delays. So all of the preschool kids that are her age are at the different festivities, they're coloring ornaments and they're decorating cookies and they're doing all of these things that she's nowhere near doing yet. Or they're running around and playing, they're playing games and she's not physically, you know, mobile yet on her own. So I think that what I try to do is obviously have very low expectations and just kind of sit her down, give her the opportunity to hold a crayon and make one quick squiggle or take a bite of the cookie Don't worry about decorating it or you know things like that so that I'm giving her the opportunity to be involved and participate, but I'm not expecting her to be Picasso, you know. So I think that helps me just feel the joy and the magic of her being involved, even though I know that she's not gonna do what the other kids are doing. So that, along with you, know if she is getting overstimulated and we need to just go sit in the truck for a little bit and just have some quiet time, because she loves riding in the truck, she loves her alone time, like alone quiet time. So giving her breaks and just not expecting her to be at the four hour party and be, you know, active and social and engage the whole time, either give her breaks or, after an hour, call it a day and say, hey, we came out, we did the Christmas festivities and we're gonna go home now, so we'll see you guys later. Thank you so much for the invite.
Speaker 5:That sort of thing that kind of helps me just be able to enjoy it but not be stressed out about it either and not put high expectations or standards on the events. And then on the flip side, when I'm hosting which I do love to host, like some of the ladies mentioned I love baking, I love cooking, I love hosting, I love decorating. I love all the things, especially this time of year. Recently we actually had her birthday party. It's at the end of November, but I moved it into December so we could have like a Christmas theme birthday party, that's great, yeah.
Speaker 5:so we had all of the preschool like homeschool kids all her age come. We had nine or 10 kids, I think, here, and so what I tried to do was make things that I knew were enjoyable for her, make those a part of it, but also know that when we're playing, pin the nose on the snowman or when we're doing the candy cane hunt or something like that, that she's not gonna participate in. That that's more for the other kids, but it still gives me the opportunity to make other people happy, but bring her back in or let give her breaks. And bring her back in and give her breaks as needed throughout the day. So for more науч minded, go to.
Speaker 1:So much good there and I love that you identified that there's some things that you'll do just to make you happy, like the candy cane race or whatever you mentioned, like that you can accept that this isn't for her as you don't think she's going to enjoy it, but let you enjoy giving the gift of this enjoyment to the other kids.
Speaker 1:I want to highlight just what you modeled in what you shared earlier about this essentially setting your expectations in a way that's looking through the lens of what actually works for my daughter, and that over here it's like it seems like you've balanced this tension between, like, giving her the opportunity but not expecting, and I think that takes a very high level of acceptance, which it's beautiful and, I think, again, really great to the kind of notice, okay, interesting. Like you accept that she probably won't participate in the way other kids will and you want to give her the opportunity to make her squiggle or to do what she can do, to be included and to participate, and like you're just very flexible about it. So thank you for sharing and kind of giving us those visualizations of those actual, tangible, what it looks like in your world. I think, erica, you were going to share something.
Speaker 3:Yes, when it comes to gatherings, we carry you listed everything. I would say that for us, depending on the gathering, it can be something really that we're very comfortable with. We could be going to my grandma's house and he's very comfortable with that house, he knows that house very well and we can let him do his thing in play. Or we might be going to say a Christmas program at the church or the school and everybody's expected to sit down for a long period of time and that is going to be potentially a disaster. We had that experience last Christmas. Jack was in preschool, so he wasn't in the elementary school yet. My older son was in first grade and he was participating in the Christmas program and it was not a good experience. We tried so hard to sit in the stands with Jack and I was trying to hold him still and still take in the Christmas program that my son was participating in.
Speaker 1:I'm laughing because I'm picturing you trying to enjoy this festive Christmas beautiful child thing, while you're wrangling a child as well. Sorry, you nailed the visual there, okay.
Speaker 3:Let me just say that wearing a turtleneck sweater was not a good idea.
Speaker 1:I was sweating.
Speaker 3:My husband had my daughter, who is barely one at the time, so he had the easy one and I was sitting there trying to fake a smile as I'm hanging on to Jack and the Christmas program ends and they had Santa visiting and they had fake presents and he doesn't understand that they're not real presents, they're not for him and he's over stimulated. He's excited there's so many people, it's like he can't contain himself so we had to promptly leave with him. He was so overstimulated, he was having a giant meltdown and publicly, and my oldest was so disappointed because we didn't get to stay, he didn't get to get to cookie, he didn't get to say hi to his friends. There was lighted vehicles outside, I don't remember, but we had to go and it wasn't fair to my oldest. And that's probably the hardest part is trying to navigate.
Speaker 3:What can we do as a family when I have Jack, who probably can't handle a lot of things, and certain gatherings, especially anything public, anything where there's a lot of sitting? We have to think about who are my parents going to be there to help us? Because now that we have three kids, what if we want to stay? Is somebody able to peel off with Jack, or do one of us have to go, or do we all have to go? And how do I make Christmas inclusively magical for everybody, like all of my kids, because it's not fair to Jack to put him in a situation like that, where it's not fair to Everett, my other son, to have to leave early all the time and to not get to do the activity. I think that's our biggest.
Speaker 3:One of our biggest struggles is how do we navigate that? And something we have learned to do is to be okay when my dad might come up to me and say and we live really close to my parents can I take Jack from him? Can I take him home or can I take him over here, or can I walk around with him and to say, yes, please, that's fine. You know it's okay to accept help and then sometimes it's okay if I have to leave early or if my husband has to leave early. It's not going to look the way I wanted it to, but to try and make it a good situation for everybody just takes some sacrifice to make it work?
Speaker 1:Yeah, definitely, Eric. Have you had to do that event from last year over again?
Speaker 3:No Turtle neck the neck all the way my dad and mom did say afterwards.
Speaker 3:They said I really wish that we had just offered to take him off your hands.
Speaker 3:I think I would have planned ahead with a backup plan and then a backup plan to the backup plan. You know, it was really important for my husband and I to get to watch our son in his very first Christmas program, you know, singing his songs with this class. And while, yes, my parents would love to do that too, they got to sit through my Christmas program and my brother's Christmas program and so saying, hey, if Jack ends up having a meltdown, would you be able to take him? And if that doesn't work, one of us is going to go and the other one's going to record it. You know, I just didn't think that he would act that way and of course, this is coming off of like the pandemic, when we hadn't really done a lot of public stuff. He got diagnosed during the pandemic and was still a very young toddler and so a lot of these things that he's doing we hadn't just experienced yet, and so I would plan so much better and have like three different backup plans going into an event like that.
Speaker 1:Mm, hmm, we're seeing a common theme of a lot of planning, a lot of anticipation for anticipating and say a high level of acceptance, because I think if we don't accept I'll use myself as an example with the food thing If I don't accept the hey, my reality is that we can't have like food out, otherwise it will be consumed in a way that's not safe, we're healthy, it's hard to accept, man, I don't want it to be that way. And so there's these parts where I think we're all still in our journey of acceptance and that that is really critical to be able to then go on to plan Any other things that anyone wants to share in this category, before we move on to challenges with gifts.
Speaker 2:I just have to say, Erica, I was cracking up when you were talking about the triple neck. I am always sweaty at family functions because where I'm just chasing Audrey around and like it's up and down changing her, like it's just a nightmare. And so this Thanksgiving it was, it was cold and I wore a short sleeve blouse, like no joke. And my husband was like, are you sure you want to wear that? I'm like I'm dead Sure, but I'm going to wear that, and I was not hot and it was great, so yeah.
Speaker 3:So all of Kara's listeners should basically take away from this entire episode Don't ever layer your clothing. Wear something to stay cool in. It's the main takeaway.
Speaker 1:Well, brooke and I, as San Diegans, know the key here, because it can go from like 40 degrees to like I mean, this happens a lot of places, right, but like layers, layers are key here. So now we know that the wardrobe necessities of a special needs mom are layers. That's so funny. Anybody else have? I want to make sure I didn't miss any any comments. Okay, let's talk briefly. We will spend a lot of time here, but let's look a little bit at gifts. I think you know so.
Speaker 1:I have four kids, so some of them have so many interests. I'm like, oh my gosh, let's funnel them down a little bit. Like they're, it's amazing, like it brings me so much joy and I love it, and he's very easy to buy for, which is lovely. If only I had all the dollars that he needed, you know, to buy all those gifts, actually, not just leave it.
Speaker 1:But other kids have less interests, levi's increasingly so, though, and so, when it's, like you know, we do Santa, and so, like you know, when all the kids are going to have presents under the tree and I still have a believer in my daughter in Santa because she's only six it's challenging, right, because, like when all the things my son wants are a list of things he's wanted for like the last two years that like here he has and he doesn't need and like we know he won't use. Or the things that actually would be great gifts for him. Like we haven't figured out how to manage him safely ie electronics it's like such a whiz at hacking through all the protections like the things that he loves, like an iPad or computer, like we just we don't want to set ourselves up for that. So it presents a little bit of a challenge, and so I would love to hear even just what your experiences are with the idea of gifts and your children, what it brings up for you, brooke.
Speaker 4:What gifts brings up for me is. I think that I went through a lot of years of grieving gifts because Lily's interests are so limited and stuck in where she's at developmentally, not where she's at chronologically, and you can only buy so many puzzles or books or marbles or balls and at 13 years old it's like man. I had this moment a few weeks ago. I was at Target and I was starting to think of Christmas and I said we never grew out of the baby toy aisle and most likely we never will. And that was somebody just like took the wind out of me in that store and that's something I've grieved.
Speaker 4:But I can accept that it gets difficult when other people are like oh, what should I get Lily? I don't even know what to get Lily at this point because she has everything she needs or wants. The most frustrating gift that Lily receives at this point is food. Oh, who gets your doctor? Lily does not have the condition you were speaking of Hyperphasia, yeah. However, she does take a medication that has a very big side effect of increased appetite.
Speaker 4:And you know I'm not saying that I understand what you're going through by any stretch, but I do get a little bit of how much of a struggle that is. And you're trying to manage it. Like you know. You don't need to eat and then the weight stuff becomes a concern and all of the things are like that. So when people give my daughter a family-size pack of double-stuffed Oreos because they know that she loves those, I'm like, oh my gosh, that's hard. I'm trying to manage that. I know they don't know what to give her. It's just a mess. So I really have to just keep myself in check. This time of year with gifts, birthdays, christmas, it's a struggle.
Speaker 1:Yeah, definitely. Anybody else have any comments here? Go ahead, Rachel.
Speaker 2:We have the added bonus of Audrey's birthday is the second week of January, so we have Christmas. Yeah, we have Christmas and her birthday and it's the same, exactly Every single thing. Brooke just said, minus. Well, we do have the food stuff too. We get a lot of that, but she can't eat on her own, so I can manage it. So it's like if she gets the full pack of Oreos or whatever, I can keep them in the cupboard and I'm more worried about me actually eating them than she is. To be honest, yeah, it's the other people, just like what Brooke said.
Speaker 2:So I went through so many years and it hits me like it did every once in a while. I have a younger niece and I go crazy with her gifts because it's so fun and she's the only girl and we have a lot of nephews and she's very girly girl, so I do my girly girl stuff for her. But we get the same things For Audrey every year. We replace. She loves books the most and so we replace a lot of books that have torn or whatever, and there are so many books. Thankfully, she really does enjoy them, so a lot of people do. But I just want everyone to stop. I'm so ready for the gift giving to be done, like I'm so ready for the nephews and nieces and nephews to get old enough to where it's like. Not that's all we do for my family, we just give to the, we all give each other's kids stuff, and I am just so ready for it to be done because it's so hard.
Speaker 2:I try to make a wish list on Amazon of like things we need and literally like chew toys that she uses, scarf bibs that we buy constantly are on there and then you know a couple of things too. But we usually end up with a lot of duplicates, because I'll tell someone that she likes something, but like her interests don't change much, and so you know she liked the same Disney characters, you know, four or five years ago, and so we have all the things of that you know and she still likes it. But so it's really hard because usually you know, typically developing kids their interests change. At every Christmas they have a new. You know what they need or want as changed dramatically usually. So yeah, it's.
Speaker 2:I have no words of wisdom other than I tell people all the time you don't have to get her anything, but of course you know they're going to and I kind of dread it. I kind of dread I get a lot of texts from my husband's family, like leading up to the season, and I'm kind of an idiot for Audrey. So clothes are always good because we can, you know, always use that. But I would give anything for her to give me a list, a wish list. That would be just my dream. So, yeah, it's really hard to navigate.
Speaker 1:Thank you so much for sharing Rachel. Yeah, a lot of common challenges, and I'm curious to hear what else has worked or you think you might try, and I think what I'd like to share for myself is that sharing that looking at activities or experiences, has helped. So we would as need any stuff Most of our kids, let's be honest, don't need any stuff but focusing on, like, what would light him up, what would he look forward to. So that's kind of what we focused on this year, but also, you know, it's not like the thing under the tree. So there's that it's always a balance. But anything else that comes up with any of you, go ahead.
Speaker 5:Yeah. So one thing that's worked for us, not necessarily Christmas time, but for birthdays this past birthday party we just did this weekend. And then last year I specifically put on the birthday invitations no gifts necessary, just to throw it out there. So and nobody asked me like, oh, what is she like? Because I still want to get her something or anything. Everybody very much like respected that.
Speaker 5:And then this year, since we were doing like a Christmas themed birthday party, I did a secret Santa gift exchange for all of the kids. So Emery got one present from the person that had gotten her. So I liked that because she still got a little something and I was able to say, okay, she likes books and bubbles and you can, you know, do that, but she's not going to get 13 books or you know, 13 bubbles or whatever getting one. And then everybody else got a little bit, a little something too. So it was that was fun too.
Speaker 5:So I think specifically saying no gifts necessary or making a way so that you only get one or two things rather than 10 of the same thing or whatever, has worked for us. And luckily, I mean, most of our family are the kind of people that are like here's $50, instead of like a gift or something, go buy whatever you want or whatever you think she needs. So we've been lucky as far as that goes, because then we don't have to like think about all the things and Eddie and I get to focus on all right, she's going to get a couple of toys that are going to be like OT appropriate or speech appropriate or something that are like fun for her but also maybe help her a little bit as far as like therapy goes. But then we don't have to explain to family and friends like, well, we wanted to get this or want her to have this, because this, this and this or whatever.
Speaker 1:So we got something also this year. That was it's a very practical gift, like I think most 14 year olds would don't be excited about it, but Levi will be like, he'll like it. It's a little techie and so he'll be into it, but it's also like, most people buy it because it's useful, so that'll be good. Okay, let's start to close down, but before we do, I want to take a couple. Like some of you all put some ideas in three episodes and like oh, these are worth mentioning. One of the things that I thought would be great to kind of open up to the forum is are there any new traditions or traditions that you have developed over the years that you're finding that you really love? And I know some of you are newer into this than others, but anything that comes to mind in the kind of new traditions or creating what does work for you and then popping up with tradition, go ahead, rachel.
Speaker 2:Audrey loves the talk of the season so she's nonverbal, but she uses an AC device and is very much receptively like kind of understands I want to. I don't think she understands the concept of like Santa comes the night before Christmas and gives you gifts because she doesn't care about.
Speaker 1:But she's probably like, that doesn't make sense.
Speaker 2:Yeah, that's like that one, but Santa right, santa in books and Santa on the.
Speaker 2:Mickey Mouse clubhouse Santa, like the vision of him and the talk of him, is very much in her wheelhouse these days and that is bringing me so much joy because I have a feeling we're going to get that more and more from her each year and she'll will like just forever get someone told me that one time. They're like I forever get like Santa in Christmas and you know so that's like a joy to take away instead of being sad about it that you get to do it. But she does love so the decorations and just like the season itself, like the day and the meals and the parties don't mean that they are challenging and hard, but the actual season. So I decorated really early One week she was homesick from school, so it was even like I think it was the week before Thanksgiving and she got really excited that I got off the tree every morning it's like on a switch, and so I walk her out of her room handheld and she helps me make it like, okay, let's go turn on the tree.
Speaker 2:And so we turn that on every morning. She gets a little advent calendar of little chocolate from Trader Joe's that I buy and every morning at breakfast they're just like tiny little.
Speaker 1:I'm like, okay, today I know they're help yeah, People give those to us. I'm like, really, we have to deal with this 25 days in a row. Yeah, see opposite spectrum.
Speaker 2:Yes, but I get to talk to her like today. You know December 12th. Then we get to have which one will it be? It's a little Santa hat.
Speaker 2:But now she's like, oh cool, it's a little chocolate thing that you give me, you know like the first, like last year was the first year, and at first she wouldn't even take it because she didn't know that it was chocolate that she could eat.
Speaker 2:But now she's like, oh yeah, give me, and I just love it because I don't care, like it's just tiny, so she can have with her breakfast, no big deal.
Speaker 2:And then this year, for the second year, we went to a light exhibit at a local zoo and it's like an animal, like very open, rural, hilly zoo. It's not like a typical like city one, and so they have a lot of like farm animals and like peacocks and like different types of animals and they do a whole really cool light up show and we have to buy tickets for and it's very reasonably priced and we knew she won it last. Like it's smaller space, which is good. We got the ticket for the first second they opened, we were there and she loved it. And so just trying to soak in any tradition that we actually can do with her and know that you know we don't go to all the parties and we don't do all those things and we can't do really late night things with her, but the few things that are available we're going to do, and that's just what works for us, yeah nice.
Speaker 1:Thank you so much for sharing. Anybody else want to share anything that they have? Go ahead, Erica.
Speaker 3:I have two. We've long since did cookie decorating which is pretty typical, I think, and I started this tradition when my oldest was probably two. By the time he was three, he was able to really be a part of it. Well, jack not so much, and so one of the things that I loved, though, is last year, when he was four, was his first year truly decorating cookies. I knew it was going to be a disaster. I mean a mess, not a bad disaster, I mean like a mess I was going to have to clean up. But the pictures of him frosting his cookie and I'm not kidding you, dumping an entire thing of sprinkles on one cookie while my back was turned, are probably my favorite pictures from last year, because of the smile on his face and the pride on his face, and it was like one of those things. Where did it go? As expected? I mean, yeah, kids make a mess, but this is a Jack mess and it was worth it. It was just such a fun experience and worth it to all the cleanup and stuff, just to see him being able to take part in something.
Speaker 3:And then the second one is this is kind of an odd one. Jack can't help himself when there's gifts around, even at, like other kids' birthday parties, we have to be very careful. He'll just start unwrapping them, and so I quit putting gifts out under the tree about two years ago until Christmas Eve, and then, after the kids went to bed, all the gifts came out and I kind of thought that my oldest would be upset, because he used to like all the gifts that would come out I grew up with my mom would wrap every once in a while, and then all of a sudden there'd be similar gifts and it was kind of fun to see how many. You know my brother and I like keep an Italian who has how many, and but it was actually pretty magical for them to walk out Christmas morning and see this mountain of gifts.
Speaker 3:That wasn't there before, and Santa didn't bring them all, of course. But that is something that I just kept doing because it just makes it easier, and now that I have a toddler, another one it's actually quite convenient as well. But it's something that I never thought we would do, but now that we do it it just makes sense, because Jack can't help himself. And this is more special anyways, because it's just all of a sudden there's this giant pile of gifts that wasn't there. So those are our two traditions, I guess.
Speaker 1:Thank you so much for sharing, and I think it's a great highlight of when we change something for one child to accommodate them. Oftentimes and this is what makes inclusion so magical is like it actually helps us everybody, and so that's the beauty that we get to see in that story. So thank you Again. We're going to wrap up here, but, rachel, you had mentioned this idea of taking a break from social media if it's hard to see, and I was like that is a good point. Let's just talk a second about that, because you know, I guess it's the common quote, isn't it? Roosevelt said that comparison is the thief of joy. You know, if we listen to my episode on defending gratitude, comparison actually can be valuable, but if we're using it against ourselves to just look at what we don't have, that's probably not super helpful. So do you want to just speak on this a little bit, rachel?
Speaker 2:Yeah, a few years ago I was in a really rough place just mentally with everything we were dealing with and I couldn't take it. Every day was just, and I think I went through. It was quite a few months that I was just like I can't. So I took it off, I took the apps off my phone. I could still sign into like Facebook because a lot of my support groups and stuff I'm on do have that, so I would still get you know those messages if I wanted to, and that was really helpful.
Speaker 2:Another thing that we've just recently done as a family and I have to give kudos to my husband because he was the one who brought it up is for my daughter's actual diagnosis. There's a thread and about a year ago it got kind of I'm just in a different place than I was, you know, a few years ago, needing all of that all the time, and it got just sad. Honestly, there was some challenges with a lot of our families and their kudos and I stopped wanting to look at it and go on it, and so my husband's like, well, why don't I join? He wasn't on it, so that like if there's anything important you know there's some like studies and foundations and stuff that are happening. So he became a member. So, like I barely even check it now and every once in a while he'll say like, oh, did you see, like the comment from so, and so you know, like, if it's something, and then if I want to read more about it, I can go on. I'm not in that place space anymore. Thankfully, a lot of things to you, kara, for that. So I'm fine with it this year and I'm fine with posting and I'm fine with looking at it.
Speaker 2:But I think it really can be hard for a lot of people whether that is not just the disability community but so many people you know is someone who's lost a loved one, someone who's on a weight loss journey. I mean, there's so many things. Check who you follow. If the people that you're following don't bring you joy and you just have these negative feelings all the time, stop following them, you know. Stop just for a while and it's always there. Like I took a break, I suspended it. Like I said, I removed the app from my phone so I had to physically log in every time and that kept me from just scrolling.
Speaker 1:So I just thought it was a really good reminder. So thank you for sharing the idea, but also just your personal experience of this particular season that you were in. You noticed that this just wasn't the right tool for you at the right time, because you know we all know that there are some good things from the community we can find on all the different social medias. Okay, Well, we are going to wrap up. Thank you, each of you for being here, and I just so appreciate that you took time out of your day to share your stories, to share your hearts and to show your brilliant ideas. So Merry Christmas and we'll see you all on the next episode.