Episode 14 - The P Word: Puberty

speaker-0: Welcome to Even If the Special Needs Parenting Podcast. I'm Michaela and I'm Mariah. Hey. Hello. How's it going? Well, it is raining. I think I ask you that exact same question everywhere. Well, I don't know how else to get into it, so we'll work that out next time. It is raining. I wish it was raining. Well, I keep getting distracted. I'm looking out the window here and Pay attention. I know, I'm focused, but close the blinds. We don't get rain very much. y'all

speaker-2: I know.

speaker-0: really don't get rain. Go frolic in it. I know. It's so qu it's just cool and it's cloudy and rainy and what did you say earlier? We were on the phone. It's I don't want to repeat it. I was like, that makes no sense. And just my hands were full. It's raining like a biscuit. I don't It's nonsensical. I know, but that's okay. So our episode today is about the P word. The puberty. The P word. man. puberty. I think this is what any parent in general just dreads from the get go. The second we have a kid, we gotta go through puberty one day. Yeah. And it's fun, you know, in every aspect, but I feel like in the regards to all of us with the kids that we have, the different dynamics, medical diagnosis behaviors, it is a beast. It is a beast. That's a nice way of putting it. Because you dread it you dread it with any of your kids, period. But then whenever you think about your special needs kids, but Wow. Yeah. Obviously puberty looks different for every child. You know, even neurotypical children, it looks differently. But parenting through it brings so many questions, so many things I feel like so many of us don't even think about asking or know to ask or know where to begin, until you're in the middle of it. But we have so many different variables and situations that we have to navigate that are so different from, with my other two children. It was just just normal things. But it's I know when it when it's Dawson, it's going to be completely different. And it's going to be night and day. So thankfully we have two moms that are coming on today that have been through this. one is a mom of a son and one is the mom of a daughter. They're both adult kiddos now. But they are going to hopefully help shed some light on the P word. I mean P wee is a lot to say it's a mouthful. So we'll just call it the P word. Moving forward. So our first guest, her name is Jerry Lynn, and I am going to read her amazing bio for y'all real quick. So Jerry Lynn Lansford has been married to her husband Roy for 35 years. They have one daughter named Haley, who is 33 years old. They reside in a small town south of San Antonio. Haley is their very special little Diva queen who was born a micro creamy at 24 weeks gestation in Amarillo, Texas, on June 2nd, 1993. Haley weighed a tiny one pound one and a quarter ounces and then dropped to her lowest weight. I just saying this out loud is insane to me. Her lowest weight of 14 and a half ounces. my gosh. That's it. it just it makes me so emotional to think about that. Haley has cerebral palsy, uses a communication device and is confined to a wheelchair. She started school at age three in 1996 and graduated at 17 in 2011. Haley was ranked fourth in her class and always enjoyed school. She has always been a rodeo fan and supporter, and in 2018 was crowned the first rodeo for a reason queen in Las Vegas, Nevada. She has a love for country music and enjoys life, her cell phone and social media to stay connected. She brings so much life joy and is such an inspiration to us and all that know her. She keeps faith in God and will be the first to tell you that she has cerebral palsy, but sherebul palsey doesn't have her. Her husband is the sole provider and Jerry Lynn is self-employed. And she is able to be a stay-at-home mom taking care of Haley full time. So welcome to the podcast, Jerry Lynn.

speaker-2: Thank you.

speaker-0: I'm so happy that you agreed to come on. It makes me so happy to to see you on here.

speaker-2: Thank you for asking me.

speaker-0: I don't think I ever realized how tiny Hayley got. And if you told me that I just did not remember. But when I read that I was just I was in shock for a second.

speaker-2: It's it's unbelievable that a human can even survive at at that weight.

speaker-0: is amazing. Yeah. Wow. Definitely a miracle with all that oof and all that sass. Whoa, she is something. I remember and I don't know if a lot of people are aware of what rodeo for a reason is but I remember going through all of that and seeing all the posts and updates and how amazing that is. Do you want to explain a little about what that is?

speaker-2: Well, it it's not even in existence anymore. it's not they no. they had another group take it over and I think it was a year or two longer after Haley was crowned and then it just kinda fizzled out. they were trying to come up with a new platform for Queens and What started out in the beginning, it was it was a really good idea. It was I mean Haley did wonderful her first year, mainly promoting rodeo and and faith in general. And she was pretty well known through the rodeo world, so that that kinda helped. She served her year and then she crowned the next one. After that, it kinda didn't the disability range between Haley and the next reigning queen. were there was there was a big difference. And I don't know if it they didn't have the support, the backing. I I don't know what happened, but it just kinda fizzled out. So I hate that. It yeah, it's kinda sad. But Haley enjoyed her year and she's known to a lot of she went from rodeo princess to rodeo queen and I mean she she was very people oriented. She she was out there. So she was the good she really spread the word and and it's just that it it kinda fizzled. Yeah.

speaker-0: Well it doesn't surprise me that she was a good queen, because she she can definitely she can do it. Okay,

speaker-2: She is a diva.

speaker-0: but that is what we love about her. That's awesome.

speaker-3: in

speaker-0: So our next guest is a mom to a son. Sandy Reese is a dedicated disability advocate and lifelong learner who has spent more than 25 years embracing the unique experience of raising a child. With significant disabilities, she lives in the Houston area with her husband and her family. Sandy's advocacy work began with her son Brandon, who has Angelman syndrome, a rare genetic neurological disorder requiring lifelong support. While started as a mother's determination to give her son the best possible life grew into a passion for helping other families find their voices. Along the way, she experienced the joys, heartbreaks, frustrations, and unexpected blessings that come with raising a child whose needs don't disappear when childhood ends. Her experiences as a mother have shaped a lifelong commitment to making a difference beyond her own family. She has served on medical, educational, and governmental advisory councils, helped train physicians and medical residents in family center care, and work to create lasting change for individuals with disabilities. Today she serves on the board of Bloom Community Services, a nonprofit dedicated to helping mid individuals with disabilities live meaningful and fulfilling lives. As Brian has grown into adulthood, Sandy has discovered that some of the hardest parts of parenting come long after the school years are over. From navigating adult services to worrying about who will care for him when she no longer can. She understands the questions, fears, and emotions that so many parents carry quietly. Sandy believes our adult children deserve more than just being cared for. They deserve friendships, purpose, opportunities, and a place where they truly belong. She brings honesty, humor, heart, and a willingness to talk about the messy, beautiful, and sometimes exhausting realities of lifelong caregiving. Because no family should have to navigate this journey alone. Welcome to the podcast, Sandy.

speaker-1: Hello, thank you for having me.

speaker-0: Of course. I'm so happy you were able to come on and chat with us.

speaker-1: Absolutely.

speaker-0: I hear y'all've had a busy day today. Y'all had a fun family outing.

speaker-1: Yes, we played hooky from church and went to the zoo this morning.

speaker-0: Sometimes it's needed, okay?

speaker-1: Too pretty of a day to be cooped up inside and it's rare that we have an opportunity to just do something on the fly. So yeah.

speaker-0: Is it the the Houston zoo?

speaker-1: It is. And it's it's Zubu, which makes it extra fun because they have it decorated for fall or Halloween and it just it's a fun time of year to go and the weather is perfect.

speaker-0: Finally cooling down a little bit.

speaker-1: Yes, and less crowds, which make it a lot easier to navigate with a wheelchair.

speaker-0: for sure. my gosh. Well, and it's in the middle of downtown. So that's, in the heart of the medical area as well. So traffic's always a nightmare. Did y'all actually get handicap parking?

speaker-1: We did.

speaker-0: You can never get handicap parking there ever. It's amazing. That

speaker-1: I slid right in and parked like Yeah, right up.

speaker-0: was just a good day for y'all. That's sad that I feel like all of us are like, we found handicap parking. We feel lucky today. There's so many places we go and it's like, well, there's nothing available.

speaker-1: Exactly.

speaker-0: So thank y'all today for coming on. Obviously, y'all know the topic for today's questions and something that a lot of families I feel like just if they've gone through it, they wish that there these were things that they would have known ahead of time or someone would have front loaded them with or parents that are slowly approaching. I'm raising my hand, me one of them, and Mariah. me too. My son's about to be twelve. and I just can't even fathom what it's going to be dealing with all of these things, the nonverbal kid who's not able to understand or grasp the concept, of things that he's going through and that's happening to his body. So and I know so many of us feel and think that same way. So I think it's awesome that y'all were able and willing to come on to talk about something that just, is so beneficial for so many other parents to hear a a perspective to help them through these situations. So Well and it's hard because I think like for me, I just want to bury my head in the sand. And not talk about it. And it re I we really need to be prepared and be ready for it. And you're like out of sight, out of mind. I know. I know. Do it when it comes. But I think this is great that we're doing this episode. So and do not feel I I just want to preface it to say that I'm not afraid to talk about things. I probably edit my language sometimes on certain podcast episodes. But this is one that I think it's okay to be real. about things that y'all experience that we've experienced, use medical vernacular. Like, you know what I mean? Like I think this is something it's important to be candid about and actually speak through real experiences and not sugarcoat things because I mean it's reality, right? Like this is the real world. So I think that's something just, you know, as we as we move forward to just it's okay to be a little uncomfortable when it comes to things we need to know about our kids. So Jerry, I'll ask you first. Before Haley reached puberty, how prepared did you feel? And did anyone explain what puberty might look like for your child? Or for

speaker-2: Well, to be honest, I really don't think any of us are prepared.

speaker-0: That's fine. Yeah.

speaker-2: I I really to be honest, and like y'all, you don't wanna think about those things. Yeah. because you're dealing with so much more. And that kind of I don't know, to us, it just kinda it didn't really sneak up on us, but I I learned that kids, females with Disabilities can s most of the time they're on the same puberty level as anybody else. But right females with disabilities have a tendency to reach those stages a little bit early. And I didn't realize I didn't even know that fact at first, but I look back like all of us women, at the age I was when I first started my cycle. And I honestly was two years older than when Haley started her cycle. So after learning that, that was kind of like a a wow moment. you know, never never thought that that, you know, the disability played into that part of life with with them. But apparently it might have. With Haley, her cognitive and her sensory levels are probably I mean They're more higher and on the on the regular female, so to speak. It it's just her body capability isn't caught up with her mind, you know. She to to kind of prepare, we we didn't exactly prepare because who would have thought it would have been so early, you know? Yeah. But but with really I guess you could say her cycle probably started before we were even thinking about that point. So that she wasn't she knew. I mean, we we had actually looked over a read read through a book, which I don't even remember the name, and I've passed it on, so I can't tell you the name of it. But I sat down with her and because she understands, I mean she's you know, her mind is is there. It's just the the the body capability is not and She understood, you know, we used the regular language. We didn't sugarcoat. We used breast, vagina, you know, mm menstrual cycle. to to explain those things. And when the time came, it was like the the fear of blood didn't didn't face her, you know, the the stage didn't really face her. She just kinda I don't know, I feel kinda bland, boring with Haley with y'all because to me, I don't know how to say it, but to me, everything just kind of went like like we would with our normal children, so to speak, with our non-disabled children. So it wasn't so hard. And we were very fortunate at school with the aid that she had, was very, very, very good with her. So reaching the point of every month when she had her cycle It was an inconvenience to her caregivers, so to speak. But as far as Haley, she handled it really well. I mean, understood the facts and why she has it. I don't know how to tell somebody on a different level, cognitive level and stuff than Haley, because that wasn't, you know, we weren't we didn't have to experience on that level. So I I don't know. nobody really kind of prepared us and nobody at the beginning told us what to expect more or less. I kinda went with just my female times of my stages of life, so to speak, and kinda just walked her through it as I remember everybody doing to me, you know, or whatever at that time of life.

speaker-0: What about you, Sandy? Did you feel prepared before you went through all that with Brandon?

speaker-1: Absolutely not.

speaker-0: Why not?

speaker-1: He was still my baby. Yeah. and I think that was probably the hardest thing for me was making that mental shift of developmentally he will always be younger than his body will be and adjusting how I interact with him and how tight a grip I had on, you know, controlling certain things. I I had to do a lot of letting go. But there was There was really no no way to prepare for that. I don't think until you're in the midst of it and you see those changes occurring and you start to go through the day-to-day motions of how that impacts you. I I don't think you can really prepare other than to know that it's coming and it's going to feel overwhelming and it's going to feel awkward and that's normal. And it's not that you've done anything wrong, you know, it's not that you didn't prepare enough. It's just something that You just have to go through it to understand it. And I think, as far as when I when I think back about providers and teachers and therapists like his team, no one really sat me down and said, or even parents that had walked the road before me that were in my life, no one really sat me down to prepare me for it. It was just something that you're immersed in and you've got to learn how to how to handle it. And having a good team of support, whether it's parents, you know, with a similar diagnosis or even medical providers, knowing that you have someone you can go to, I think is the greatest help. So that when you do reach a point that you're you're not figuring this out on your own, you have others that you can you can reach out to and for for emotional support and practical support.

speaker-0: What were the first changes you noticed and what surprised you the most?

speaker-1: For Brandon, it was hair growth. He started, you know, growing hair under his arms and in his diaper area and that and and things were growing and changing as well. and that as a mom was really difficult.

speaker-0: Yeah. You don't you don't wanna see that aspect of your son as a mother. You have to kinda you have to put blinders on when it comes to that.

speaker-1: Exactly. Exactly. And you know, it's not like you can pass that off. You know, you're always gonna have dad or, you know, another caregiver that can step in. so I I had to work really hard at becoming comfortable. And it's still uncomfortable, you know. But it's it's you know, it's not nearly as uncomfortable as it was in the beginning. His sweet little voice, h his vocalizations went from these really high pitched vocalizations and cries to very, very deep. And now everyone in church knows when Brandon's in the room because his voice is so loud and so deep. and and he's definitely, even though he's nonverbal, he he uses his voice quite a bit. And that was that was a bit of a shock too, you know, to hear that voice change. And then having to shave him, the sweet little baby face when I go to snuggle and tuck him in at night, he he would have, a little bit of stubble. And that was that was shocking. and the physical strength, the fact that I went from being able to pick him up and carry him and transition him with no problems up until he was 16 years old. I was pregnant with Maddie and I was still doing all that. To not being able to do that. And if he decided that he didn't want to do something, he figured out he was now bigger than mom and stronger than mom. And, you know, find a way to navigate through those sit outs and those refusals to do things that might be medically necessary. Yeah.

speaker-0: Jerry, what about you? What were the first was there anything that was like major that you noticed was like one of the first things?

speaker-2: would say I agree with Sandy with the hair, armpits, legs, you know, time to shave. but also Haley, I guess the very first was breast development, to be honest. it's like one day they're in a training bra and the next day she's in a a big girl bra, so to speak.

speaker-0: That happens so fast.

speaker-2: Yeah, it was like my gosh, the little girl went to the young lady in the blink of an eye. And Haley actually, Haley was not toilet trained until third grade. She started third grade in panties and it was the best thing. I mean, it was we didn't well, we did realize it then how how fortunate we were that she developed that skill, but it really hit more so towards junior high. When the junior high years came, we were appreciative that she and blessed that she did develop that skill. Yeah. Which Michaela, as you know, Haley, she's she's nonverbal, but she does use a communication device. So and because of her cognitive skills, you know, they I'm sure there was many times that some thought they could get by with a lot of things with her, but she she

speaker-0: No.

speaker-2: kept us she kept us well informed. So Like I said, it's it's just to me, a lot of it's trial and error depending on the individual child. And and until you're put in that position like Sandy was describing, you kinda you don't know, you know, you don't how they're gonna react, you really don't know how you're gonna react. And you don't know what's gonna work best until it's trial and error. That's my that's the way I feel.

speaker-0: So I'm curious though, like just you know, leading up to more questions, was that something you thought was coming or approaching soon, or was it all of a sudden one day she went to the bathroom and she has started her period? Was it like a complete shock when that happened?

speaker-2: No, I didn't I didn't really see it coming. I mean, I seen the development stages, but when she did start, it it wasn't anything heavy, you know. It was kinda light. And so I'm going, well, okay, here, here we go. You know, it's yeah, the reality is setting in and the maturity level is rising. But yeah. And I look back and and Michaela, it's like some of these times it That we're talking about, I'm going, they seem so far away. But then yet it's like, that was yesterday and here she is thirty three,

speaker-0: So were there like certain aspects, you know, we talked about the physical changes or new routines in particular that took the most preparation? So like in regards to having a nonambulatory female, how did you approach things, you know, like body odor, body hair, breast development, you know, periods, things like that? Like what was the big jump that y'all really had to to tackle with new routines?

speaker-2: Actually I I don't think there was a major change, Michaela. the main thing was just keeping her clean, which we did anyways, you know, just like just like with her teeth. I I started brushing Haley's gums with the numb numbmy toothbrushes, you know, the little nubby toothbrushes. You know, I started her gums, she didn't even have any teeth, you know, so I've always been a fanatic about keeping her clean, the showers, the the hair washing, the shaving, the all all all of her hygiene stuff. nothing just because she was cycling, it didn't really change our routine. I mean, because we did it, that was just the thing we did. I mean, right. I was one of those moms that that, you know, she didn't stay in any any panties, any diaper at the time, you know. That wasn't clean that yeah, not at all. So when when the time came, the only the only thing we probably did a little more often when Hailey did she did transfer from her her wheelchair to her adaptive toilet seat and there was times during that time of the month that by the time you actually stood her up to pull up her her her panties, her shorts, her pants, whatever, that if the cycle was heavy, which sometimes she was, it required a another clothes change, so to speak, because when you're when you're by yourself and you're you know, we were holding her with one hand and pulling up her pants and stuff with our other hand. with the heavier cycle, it caused it to flow down, you know, at the in the in the process because she did stand up. Right. And So maybe a a few more clothes changes, that took just a little extra time. But other than that, we pretty much stuck to our normal.

speaker-1: Yeah.

speaker-0: So do you think that would be something that would be just a good, word of advice for other moms getting into that point is, keep your routine, but maybe obviously there's gonna be extra steps involved, once that happens with, especially, with daughters who are non ambulatory. I several moms I've talked to, I think that's one of their fears is they have a non ambulatory daughter. The dynamic of physical things in that regard for a female is very different from a male. do how do you think, you know, some of them telling them moving forward, you know, you think it's best to just kind of keep your same cleanly routine but just add a little extra, you know, steps in with

speaker-2: That's what I recommend. I don't I I don't know about other disabled females during that time, but Haley's always been a routine child. I guess because that's what we've always kept she's always done well to stick with routine. You get off a routine. It's not s I mean, she's a little more flexible now that she's out of school and and older, but younger years it it was she did so much better sticking with our routine. And I don't know if that's just because That's what we did, day in and day out and that's what she was accustomed to. But she she did well and I think it made things easier a

speaker-0: Yeah.

speaker-2: for her and for us to stick with routine.

speaker-3: Yeah.

speaker-0: Well and that may be something that, parents could think about now if they know that that time is approaching soon to start their routine now before they get, past that tipping point to where it's harder. And then that way moving forward, once you get into the middle of it, then 'cause there's there's a lot of us. I'm not raising my hands, but I am that, sometimes routines don't always happen, Exactly. Sometimes just it might be easy to just get one going now before it, gets too late. But it sounds like y'all definitely had a handle on that.

speaker-2: We did. We did.

speaker-0: Awesome. What about you, Sandy? So this is definitely a different dynamic having a male. How did y'all approach things like you talked about body hair a little, but body odor erections? I mean, that's definitely a a difficult one when it comes to males in that regard.

speaker-1: body odor wasn't really an issue. We just got him used sensory wise, because he has a lot of sensory challenges, getting him used to actually putting the deodorant on. So we had to incorporate that into our daily routine. And now he'll lift his arm and he'll help. But in the beginning it was a challenge because he would fight it, he would push away. and I I wanna explain a little bit For the listeners about what Angelman syndrome is and how it affects him, so they have a better understanding of where I'm coming from. And I didn't do that earlier. Angelman syndrome is a genetic condition that happens spontaneously that we did not know that he was going to be born with Angelman syndrome. And it took us about a year and a half to get a diagnosis, but it impacts him globally. He's nonverbal, although his Receptive language is much, much higher than his expressive language. He has a few modified gestures and vocalizations, and he finds a way to communicate with us for the for basic things or to answer. Often, he'll he'll if we ask him a question, he can find a way to communicate a yes or no answer. But with him being nonverbal and also having an intellectual disability along with the physical disability. It makes it really challenging to be able to to tease out his level of understanding on certain things. And he also has a diagnosis of cerebral palsy, autism like features, and other medical issues. So I just wanna kinda make that note. but anyway, in regards to other physical changes, one of the hardest things that we dealt with, and it was something that we've we are still dealing with is diapering because he is incontinent, both bowel and bladder. his body is bigger, his private parts are bigger, and he leaks. He leaks terribly. And that wasn't an issue when he was younger. As his body grew, finding products and finding strategies that worked to keep him continent or not continent, but to keep him dry so he appeared To his peers has been a big challenge, and it's still a challenge. And I was really unprepared for that, and no one really warned me about that. But we've trialed every product, we double up on now depends, and we put an insert on the inside. And even then, he leaks multiple times a day. We have multiple clothing changes per day. I have to change his sheets almost nightly. We have A regular washable underpad on top of his sheets. And then on top of that, we have disposable underpads, but he moves around in the in the middle of the night. So often all that, you know, gets moved. And you know, we've got to do a full, a full change. So it's changed a lot of the practical caregiving aspects of our daily routine when it comes to things like just managing, being prepared for that when we're out in the community. And also, you know, finding the right supplies to manage that.

speaker-0: One thing I think that's important to touch on, and I know it's a word that freaks people out, that probably even more so than puberty is masturbation. And a lot of people that is a scary word. It's a word that you freak out whenever you hear, it's word you don't want to think about your child doing. Let's face it, we don't want to think about our either, either or male or female. We don't want to think about them doing that. And we almost want to like pretend or act like it doesn't happen. And I let's face it, we can't. Okay. It it's it's just it's part of the puberty aspect. It's part of our kids growing up. you know, I have two boys and night and day, one's about to be 19, one's about to be twelve, and one, you know, physically and cognitively doesn't understand, doesn't know any better. But like, for example, on why it's one of these things that we don't need to freak out when you think about it, just from a clinical standpoint with a boy, is there was A time when when we were changing Dawson's diaper, the second his diaper came off, he was grabbing at himself and he would laugh hysterically because I'm sorry, I know it felt good. And I was like, What? Like what? boys, is this all boys? Yes, And of course I looked it up, and it's like four to five thousand nerve receptors alone, just in the very, you know, tip part of a of a mouse, you know, private area. And I'm like Course he's gonna grab at it and giggle and laugh because it feels good. So then that makes me have to stop and think moving forward with all of our boys, especially, is it starts in a way of where they kind of just discover it, you know, quote unquote air quotes, discover it probably by accident. Yeah, and then it spurs into something a little bit different. So, like with Deacon, I don't want to go into a lot of details with him because he's obviously able to understand. And listen to this one day if he wanted to. But he is a stimmer. He's on the spectrum. He stems. He still stems. He has always stemmed. Yeah. The stems have progressed and changed. I mean, I could write a book about the types of stems that exist. but that was one that he did was he would grab at himself and he would touch and and I know it would probably calm him down, you know, to an extent because of the way it would feel in those moments and the the sensations that he would feel. So I tried not to. let myself freak out about it. And that the main thing we focused on was breaking that stem. Yeah. Because we knew if it just kept happening and we just were like, it's just he's just stemming. It is what it is. Then that's when it starts to turn into something that becomes inappropriate or wrong place, wrong time. And so we had to teach him how to break it. Or if we were going to do it, we could not stem and do that in public. You know, time and place and all that that kind of stuff. So I know there's there's so many more levels to that, but I think it's just something that's worth talking about. And and you could probably have a whole episode over it. I think one of the most important things to do is to just realize that it's it's natural. It's something kids, boys especially are going to discover. A lot of times, boys with autism, really especially because they fixate on things, especially if it relieves some sort of, you know, pressure or release or frustration in those. moments to where I know I've I've talked to moms that have been frustrated about it and I just you know I think it's important just to to touch on to the fact that it's it's something that if it happens don't freak out don't make it a bigger deal than it is because I think sometimes and you know they feel shame and then they get anxious or upset and it then that can cause you know a spiral in a whole different way than you want to. I just think it's something that it's it's natural. It's part of The hormone process with some of our kids and those with Dawson who don't cognitively understand what it is, it goes back to like just finding a way to kind of break that habit. Yeah. Because it's I mean, it's present, it's there, it's going to happen. So we can't just, you know, out of sight, out of mind, if we don't talk about that doesn't mean it's going to happen. It's going to happen regardless. Yeah. And if you're open and honest with them, especially the dads and when it's in the situation with the boys and just really having those Conversations probably regularly. I don't think that's just a one and done conversation. It's not it one and it is an ongoing conversation that you you have to have with those boys. And and I know Zach did a good job with Deacon in that. So but I'm but I know there's there's single moms that have boys. I know. And I know it's a whole different ballgame. But you know, that's when it's also worth, you know, there's books, there's things to read, there's things to, you know, there's there's hopefully men in your life that you're able to talk about their perspective on how they would approach it. Because there's certain things I cannot talk to Deacon about because I was never a man. So, you know, there's there there are certain things that I I'm thankful that I have a husband who was able to take the wheels in that situation to, you know, just be realistic with him about things in that regard. Yeah. Yeah. Very good point. I just I just think it was important to touch on that a little because I do know that it is something that a lot of us as parents are very anxious about. We've already said some in the episode. It's it's one of those things where you just kind of have to figure out when you're in it and you just gotta stick with it and, you know, and do what works for your kid and, you know, push forward. So Yeah. How did your child's communication, learning, sensory, or physical needs affect how you explained puberty or supported them through it?

speaker-1: honestly we didn't really prepare him for it because developmentally we just we just didn't. We didn't we didn't feel that it was of interest to him or that it bothered him. And if if we if we did, we would have had those discussions. We we just supported him through it and we were, you know, patient and as respectful, well, obviously respectful. to him when he needs privacy. But that, you know, that hasn't really been an issue. Yeah.

speaker-0: I like Jerry kinda answered that one a little bit earlier, just being how Haley's able to communicate and understand so thoroughly. Do you have anything else to add to that?

speaker-2: No, I I don't. sometimes that's a plus and sometimes it's makes a disability so much harder. Yeah. You know, because she's always been higher with her cognitive skills and of course through those younger years typically wanted what a girl her age wanted, you know. And as elementary, it it was it was kinda go with the flow, but Junior high and high school, it it gets a little it gets a little more challenging with her cognitive skills because she knows her body wasn't able, but her mind knew exactly what she should be doing, what she could have, what she wanted. And it it made the disability a little more challenging. but then again, because of that and her understanding everything, it It was really smooth, telling her about her administration, the time of the month, the body parts, just everything went so smooth with her that I didn't really feel like I had much of a challenge because she understood. So I I you know, kinda played both ways though, because it made things easier, but then it made the disability harder in a sense because you know, as a mom. We all want those things for our kids, you know what what we don't have. But then down the road, as you'll talk on in a little bit, I'm sure, we have to think practical. We have to think reality. So there was lots of things to take in consideration as she got older.

speaker-0: Yeah.

speaker-2: Versus the younger days.

speaker-0: for sure. So this is a little bit of a two part question. So when there were moods or changes in behavior, you know, especially since, you know, both of y'all have kiddos that are nonverbal, how did you kind of differentiate whether it was something related to puberty or being in pain or, you know, just all the crazy hormones, you know, flooding through their body? How was that dynamic of it on y'all's end?

speaker-1: That has been especially challenging for me or for us and our family because we can sense that something is wrong with Brandon and it's it becomes a process of elimination. Is he anxious? Is it that you know we're not meeting a need that he has? Or is he in pain? He has a very high pain tolerance and he's not able to communicate when something bothers him physically what that might be. And so if we can't solve it through the process of elimination, you know, let's make sure that he's not trying to tell us that he wants something. So we go through the list of the things that he might want, where he's anxious about something and try to support him from a sensory perspective to help ease anxiety. Then it becomes okay, is there something medical going on? Take his temperature. Is he constipated? is, you know, is there down to is there hair wrapped around a digit somewhere causing him pain? Or do you have an toenail? Or, you know, does he have a UTI trying to test his urine at home? Because that's been a challenge for him. and sometimes it leads us to the emergency room to where we have to figure out what's going on. And when we reach that point. that we're not able to solve it at home. It's usually something medical. And then we have to start down, the the rabbit trail of testing him medically for different things. And it's the same process there. MR, CAT scans, you know, vitals, listening to his chest, you know, checking, checking for signs of infection, those types of things.

speaker-0: Did y'all deal with any of that, Jerry?

speaker-2: No, not the main thing was mainly irritability, you know, and kind of attitude. And you pretty much I mean you pretty

speaker-0: All females, yeah.

speaker-2: Yes, yes. the frustration during that time of month with her, she was a little bit more agitated than the other times of the month, but it you know, she she's very she was vocal with her communication device. So, you know, as far as if there was any cramping or anything like that. she brought it to our attention herself. And it it it made things simpler, honestly, in our situation. But I didn't really experience anything other than to me, what I look yeah, what I look at now is female hormonal issues. You know, during that time of the month.

speaker-0: That kind of stuff just with pain meds, kinda like we do when it's ourselves. Yeah.

speaker-1: Yeah, it's

speaker-2: She felt like i we would we would do Tylenol, you know, if I mean that was the main thing. But yeah, it was she did she handled it very well to be honest with you, considering, you know, being non-ampulatory and in her situation. So she she did handle that part of it pretty well. of course, back in those days Haley was a horrible sleeper, you know. sh there was a time when we went through seizures for several years because stress and fatigue and she had both and they never medicated her so they were kind of few and far between but they went on for a number of years and then finally they just disappeared. So yeah. But it it things when when she when we took less stress off of her, especially after graduation, she started sleeping better. I believe her Her last seizure was twenty fourteen, twenty fifteen. and they were they were always only about thirty seconds, you know, if that, maybe less. but those times were a little more scarier and a little more trying. But she she's she's a strong trooper. So she kind of helped us, you know, in in the long run. She she did help us and it it made things a little bit easier.

speaker-0: Did they ever say that the doctors ever say anything about her seizures being related to puberty? 'Cause I've I've heard that a lot when it comes to going through the puberty stages that a lot of times. That they've given me that excuse with Dawson. well, he's that age. We see it more through puberty. Did they ever mention that to y'all?

speaker-2: They in our case, yes. they said the hormones and then with Haley stress and fatigue, she kinda kinda the combination brought it on and that's why I guess that they never medicated her for seizures and she was we don't even have that diagnosis, you know, really. But I I think it was I think it was hormone related and during puberty time and

speaker-0: Of all the things.

speaker-2: Yeah. And we we go down further and she after no longer having cycles, you know, those those times are behind us. But I would say in our case, yeah, I think I think the puberty stages contribute a lot of that because it seems to be more so during that time period.

speaker-1: For Brandon, his seizures were the worst during those early preteen years when they were uncontrollable. And he we trialed so many different seizure medications and he failed. And we were looking at VNS, like what's done with Dawson. And ultimately we decided not to pursue that, not because it wouldn't have been good for his seizures, but because he has a lot of vague bone issues and a lot of concerns about his gastrointestinal tract, if we mess any anything that we do to the vagal nerve could cause further problems to exacerbate his GI problems.

speaker-0: Yeah.

speaker-1: So we didn't go down that road. But it it was a long two or three years of trying to get his seizures controlled in the early stages of puberty. In the later stages, they actually leveled out And he has been on the same doses of his anti epileptic medications for ten years. Even if his body

speaker-0: me hope. You're giving me hope, Sandy.

speaker-1: continued to grow and the medications obviously became less therapeutic.

speaker-0: Yeah.

speaker-1: He has maintained, you know, a pretty much seizure-free status for many years. I can't remember the last time that we've had an epil like a full-on, full-body tonic, clonic seizure. There are times when I feel like there's some absence or maybe some myoclonus or atonic thing going on, but But nothing like it was before.

speaker-0: Yeah.

speaker-1: We still carry Valtoco, but thank thankfully we've never had to use it.

speaker-0: That is crazy what that hormonal stage of puberty can just that tells you how much havoc it could, quote unquote on their bodies that we're not even aware of when they go through that window of, seizure frequency like that to just, all of a sudden just dropping off because they basically age.

speaker-3: Mm-hmm.

speaker-1: Mm-hmm.

speaker-0: Is that something that you had thought with Dawson? Cause I don't guess I've ever talked to you about that. of course, I'm asking doctors. I'm like, he's had this amount of brain damage since birth. It's nothing new. Yeah. He's had seizures since he was a week old, but they've always been controlled by meds. So of course I asked, What happened? Like what? And they're like, well, he's just at that age. We just we just see it when he's approaching puberty. They just and then I'm like, but why? I want to know why. And they're just like, We don't know what. But that's your job to know why. But you know, that's just kind of what they say. They just see it around puberty where it's just there's a shift and it just happens. Crazy. And I'm like, well, it can shift in the opposite direction anytime it wants to. But that is encouraging to hear sounds like from both of them that their kids phased out of it as they got older. And this this is kind of in regards to the same question, but I know it doesn't really fit any of us really individually, but I'm curious just to know thoughts because I know there are so many parents that this is going to be their biggest concern, especially those with kiddos on the autism spectrum and things like that. It is the area of mood and behavior changes because that is something that affects depending on the diagnosis in the kiddo. so drastically as I know we have so many parents that are worried and anxious about that dynamic of going through puberty almost more than just the physical changes. So has anyone experienced anything in regards to extreme mood and behavior that they feel like or, you know, family members or anyone that they know or they've been around to see how that, you know, is affected.

speaker-1: Easing my hand. Yeah.

speaker-0: Ha ha ha.

speaker-1: That this is Sandy. That was a a huge, unexpected, out of left field issue that we we dealt with. And it was at the height of COVID. It was like the worst possible time. Like when everything shut down, all these behaviors started well, they were already manifesting, but they became like heightened and intense because transition is hard for our kids that, have autism or autism like features. And all the supports were pulled away and all of the routines had had just fallen to pieces. And he started to develop some extreme behaviors. He started biting his clothes and literally ripping his shirts in half. I called it the

speaker-0: Yeah.

speaker-1: The incredible Hulk. And he still does that when he's super duper frustrated or in pain and can't it can't be managed. he he will do things like that. But he was doing that, and he was literally banging on the windows in the house where I thought the glass might break and putting his finger down his throat and gagging himself. And it was trying to figure out is this anxiety or is there a medical reason that he's sticking his fingers? in his mouth and he can't communicate. and in that instance, the the finger in the mouth thing, we were able to eventually figure out that it was anxiety. And we started working at Texas Children's with a psychiatrist and we trialed so many medications and that was so difficult and the side effects were really challenging. And I finally had to go and and just reach out online to my Angelman syndrome family and say, okay, tell me what you're doing to manage, these these, what appears to be anxiety, and get their advice on the medications that they were using with their kids that have been successful. Because oftentimes, even in the disability world, when you're working with a psychiatrist who has a good background in working with people that are atypical. di neurologically, what works for one patient population is not going to work for all patient populations. And so they kept throwing the typical autism type medications at us and they weren't working for him. And what ended up working for him was something, you know, that I had to suggest and convince them to allow him to, but it took a good two years to get all that straightened out.

speaker-0: Yeah. And I know there's a lot of, you know, parents that go back and forth and that are anxious and, you know, have thoughts and you know, doubts, you know, when it comes to medication and medicating during certain, you know, situations and things like that. But I mean, like what are your thoughts on that when it you know, 'cause I feel like there's certain times when it is needed, even if it's for a season. As a you know, and not just for not just for us to be be able to handle and get through it, but also, you know, for our Or kids' sake as well.

speaker-1: Yeah. I was I was one of the moms that the medication was the last thing I was gonna try.

speaker-0: Yeah.

speaker-1: And I tried all all the behavioral techniques, all the things, you know, that should have worked but weren't working. And you know, he needed support. He was he was really his it was his anxiety. We learned that it was everything was driven from anxiety. And if we can manage that, whether it's through, you know, routines or you know, verbal prompts or giving him space. But we we needed more than that. And and that's when I said, we need to try medication.

speaker-0: Yeah.

speaker-1: And the medication that they had put him on, risk for he was on for a long time, it wasn't holding him like it used to. It wasn't helping him. And then we went down the rabbit trail of all the antipsychotics, and those made it even worse. And it was awful. And the the withdrawal for him was really challenging. It it ended up being Boosperoon for him that was the game changer. That in Prozac.

speaker-0: And you feel like that made a difference during that time?

speaker-1: Huge difference. Yeah. I went from not being it had gotten so bad that once things opened back up with COVID and we were able to go back into stores and do things, I couldn't get through a grocery trip or just to go get one thing because he he was so anxious being in that setting that he would try to get out of the chair, he would be, tr literally pushing with his feet, lifting up the foot plates of his chair, trying to push himself down the aisle away from whatever we were doing. He was so anxious. And and it really, it really made a big difference for him. But it took a long time.

speaker-0: Yeah. I do have a question for Jerry. When did when did your daughter get her communication device? I've just been curious about that.

speaker-2: She started at age three.

speaker-0: Okay, okay, so she's had it for a long time.

speaker-2: all the physicians kept saying, we gotta find a way for her to express what's up there. She's got it up there. We need to find a way for her to express it. So, I mean she's she says, you know, mom and ready. She says limited things with her mouth, with her with her voice, but the rest is all done through the communication, which of course now it's she sends me text messages and Facebook messages from her cell phone. So Yeah, we have to tell her, Haley, you've got to keep using your device so you don't forget because it takes a pretty good memory with the one that she's on to be able to to communicate with that device.

speaker-0: Yeah, that I just I this as you've been talking that just crossed my mind. I was interested how long she's had it for. what did you learn about supporting hygiene and personal care, but then also protecting your child's privacy and just their independence and dignity.

speaker-2: In Haley's case, it's really it's really well, and I guess in Sandy's case as well, because they're total dependent on a caregiver. So their privacy there's not a whole lot of privacy sometimes because of the situation. Like there's a lot of times we've been in a public restroom stall. Well, the wheelchair, her and I, the door doesn't shut. So you have to with her to transfer her to the toilet or from her chair and vice versa. It sometimes she doesn't even have privacy there. because I guess it's the same thing if you had to lay them on a diaper changer or something and they're exposed. There is no privacy. Yeah. And w I feel when they're total dependent like that, it's it's really hard to to protect their privacy in some form and fashion, you know? Is

speaker-1: Which is

speaker-0: not the way it should be. Yeah. Was there a time where maybe she didn't want her dad, you your husband, to be the one to to have to to do things like you know what I mean, where she just wanted you

speaker-2: There there was no just a very brief moment. Like if I was changing her shirt and I took off her bra and he walked by or something, you know, she would like put her hand over herself or you know, something like that. But it's always just been him and I. So even today, at her age, if I'm gone and he has to take her to the bathroom, wipe her or whatever, she she understands that. and I g I'm I feel blessed. I feel fortunate that I have a man that 'cause those thoughts you you worry about that because you it happens in regular situations where you see a lot of that this day and time with just a a regular ten year old, a fifteen year old, you know, with the with the with the abuse like that. And it's scary, but it it's it's him and I. That's all that's all it is. So she knows, we know, and I got I recently got down in my back and I've always been the one to shower her. Well I strained my back and I was having some spasms and so he stepped up and helped with her shower, which she she understood that dad had to do some helping during that moment where it's usually always just me. It's challenging, it's tough, but I'm I'm thankful it's it's him and I and Yeah. She she's confident and she trusts. Both of us, so that helps.

speaker-0: That's good. What about you, Sandy? Have y'all had to do any crazy situations when y'all are in public to help protect just, you know, privacy and things like that?

speaker-1: We don't do diaper changes in public unless it's a quick change and he's standing up in a stall because I can't lay him down, you know.

speaker-2: Yeah.

speaker-0: They don't have adult size changes table. No.

speaker-1: And I'm not gonna lay him on the floor. I'm not gonna So I drive a specific type of vehicle. I'm on my fourth or fifth Honda Odyssey. And one of the reasons I have a Honda Odyssey is because it has a handle where it has and it's low to the ground and he can help transfer into the vehicle, but also because there's that bench seat in the middle. And if we need to do a diaper change and we're in a situation where there's not an adult changing table, which is ninety nine percent of the time.

speaker-0: Yeah.

speaker-1: at Texas Children's

speaker-0: Yeah.

speaker-1: Texas Children's now, which is true

speaker-0: True. Yeah.

speaker-1: They don't have them at the adult hospitals.

speaker-0: Which is absolutely cuckoo. I just I

speaker-1: Yeah. They're not no, they have them at Texas Children's and when he was at Complex Care I loved it because I could take him in and change him and there was it was electric and went up and down and you know, it was no problem and it had a curtain and everything. I think

speaker-0: Is he yeah?

speaker-1: Yeah. he's able to stand and so with support. So I can take him into the ladies' room and just, you know, not worry about what people think because he can't go into the men's restroom by himself. Yeah. Yeah. So, you know, I'll wheel him in there and and try to get the chair in the stall. If I can't do that, then I'll have to like l pull him up and he can he can, you know, with support walk into the stall and hold on to a rail. But ideally it needs to be, a handicap accessible situation to where there is railing and and I can change him standing up if it's just a situation where it's, you know, urine. Yeah. But if we're dealing with more than that, then I need to take him to my vehicle and change him there. And that's what I do. I have my own little mini changing station in my vehicle and all the supplies.

speaker-0: Yeah. Does he cooperate when you had to change him in the car?

speaker-1: Most of the time. Most

speaker-0: kinda gotten used to it.

speaker-1: Yeah. Most of the time it's not a challenge. Yeah.

speaker-0: sadly, Dawson's only eleven. He'll be twelve and he's not a full not a full size. He's not a typical size twelve year old. But still, changing tables don't even fit him anymore. So that's not even something we're even capable of doing. So we will basically drive to the far side of the parking lot wherever we are, if it needs to be changed, and swing the trunk around 'cause we have a minivan to where no one can see, in the back of what's going on because there's just there's no other option. When it comes to changing on.

speaker-1: Yeah. And I do the same thing. I will, if I'm in a crowded area, I will drive to a remote area to where we have privacy and position my car, to where we have as much privacy as possible. But I don't want to have to drive all the way home because often, anywhere in Houston, it's an hour to get anywhere. Yeah. Yeah. And I don't want him to have to suffer through that. So, you know, I try to find a way to do it to protect his dignity and privacy. Yeah. And and also meet his physical needs as soon as I possibly can. Yeah.

speaker-0: All the things we have to do that no one else realizes.

speaker-2: Right. I know with Haley too, there's a lot of times it's easier for me just to take her out to the van. And what we do is I have a Toyota Sienna and we put down it has the the blinder things, the what do you call the visor things that come down on the windows in the back and everywhere. And we actually use a bedpan and she'll stand up in her wheelchair and I slide the bedpan underneath her and then I take it out, take care of her needs and everything. And sometimes that's even so much easier than fighting some of the handicapped stalls. You know. But yet she has no accidents, you know, the hygiene's there, everything. And it's pretty sad to say that sometimes it's easier just to do that than it is to even deal with public restrooms.

speaker-1: Yeah.

speaker-2: and heaven knows there's not enough family restrooms in businesses this day and time.

speaker-0: No.

speaker-2: Nope.

speaker-0: So looking back, I know Jerry, it's been, a little while. and Sandy, maybe a little bit for you too. what did y'all feel like the hardest part for you as a parent was during this stage? Like were there was there like that moment that was like, my gosh, no one told me about this?

speaker-2: No, not for me, not really.

speaker-1: I think that the hardest part for me was learning to just let go and let other people step in and help because I had reached a point where I did need help. And recognizing that and realizing that I needed to start to be intentional about providing him opportunities to assert some independence as much as he could. Like allowing him to go to sleepaway camp, that was a big thing. But I recognized, as he hit those teen years that I'm not gonna live forever. And I need to to develop a plan to start to become comfortable myself with the idea of other people meeting his, you know, very personal needs and and being able to care for him and having the confidence that there were people in the community that could provide safety and dignity. an opportunity for him. And that was one of the hardest things about him growing up is just allowing other people to step in and and take on part of that role that is always been or had always been mine. So that meant you know sleepaway camp, that meant respite weekends. And eventually that meant, you know, trialing day programs because eventually I knew that there's going to come a point in time That he's going to need those things, and I can't provide all those things, and I'm not going to be here to do those things throughout his entire life.

speaker-0: don't feel like I consider myself a controlling person in regards to my kids, but it is hard to just kinda let that that control go and just and also be trusting of other people. That's hard too. Like it's it's it's scary.

speaker-1: Very, very hard. Especially when they're nonverbal and they don't have a formal way of communicating. He can't come to me and tell me someone hurt me or you know, someone said this to me. He we've trialed devices and you know that he could he do it? Yes, with support. Does he want to use a device? No. He's made that. Yeah. Very, very clear. that that's not his preferred way of communicating. So, I were talking to other parents about speaking of camp, talking to other parents about their experiences and were they comfortable letting their children go who have high needs. And, you know, interviewing, you know, respite workers and caregivers and things like that. And oftentimes hiring people that work at the school or that are in school to become speech therapists or physical therapists or nurses or, someone in the medical field that has an interest and that there's a certain level of trust because that's what they're pursuing and and they're held to a certain level of accountability. but yeah, that's that's one of the hardest things is learning to let go and trust.

speaker-0: Did you get helpful support from doctors or therapists or school staff or other families?

speaker-2: Well, with Haley, during the cycling days, we actually reached out to her physician. she was put on oral contraceptive during her started in her junior high years to slow the flow of her cycle. And they were they were real helpful in that sense because you know. We all know what we think about when we hear oral contraceptive and of course the side effects and everything else. But we did it and it was actually so beneficial in her situation. It was it made it so much simpler during that time of the month. however, she made it through junior high and high school and it was kind of smooth sailing. Well, her senior year in high school, she ended up Getting blood clots from the oral contraceptive. I picked her up from school. The school hadn't called or anything, but I picked her up and her left leg was so huge and rock hard that I was like, what the heck is going on? So I pulled up in front of her doctor's office, which Michaela, it was Dr. McFarlane, and he came out and he told me, get her to the ER. He said, I believe she's thrown a clot. So I took her there. And needless to say, yes, we did experience clots and we had to stop the oral contraceptives. And so we made the decision to let her go ahead and cycle until after she graduated because that happened in January of 2011. And we said, well, we just Have until May and get her through till graduation. And then we'll discuss the next step. Well, that's when we kinda had a come to Jesus meeting and stuff with her physician and and my husband and I and her, and we talked about hysterectomy and The pros and cons, and I will be the first to say it was not an easy decision because that's a decision that nobody wants to have to make for somebody else. But to be practical and the reality check is Haley would never be independent to where she would not have somebody with her 247. And there was no way bringing a kid into her world was even an option. And so they met with her, they met with us, and we ended up doing a hysterectomy on her August of 2011. And honestly, it was the best thing for for her and for us, we feel. everybody has to, you know, make that decision with their child their self. But in our case, it was one of the best decisions that that we had, when it came to that time of her life with cycling and and we all know why women cycle. And in her world, it it wasn't gonna be necessary to put her or her caregiver through that every month, you know, for the rest of her life or however however many years. But yeah. But she she will tell you that The doctor talked with her, she she understood, she was comfortable and she's glad we did it. Yeah.

speaker-0: That's good. And I know there's a lot of parents that are in that, out of puberty stage, but in that part of life to where, you know, there's a lot of different types of hard decisions like that that have to be made for their their for their kids. And I know it is not easy. And it sounds like y'all definitely put a lot of thought and, you know, conversating in before.

speaker-2: We didn't for her. And I think having her understand and knowing the cards that she was dealt and what the future was gonna hold for her made her decision on it easier too. it wasn't easy for us just because you just hate to make those kind of decisions because through this to we feel like it's a a live and learn, you know. We don't know looking back in her younger days you think, Well, maybe I should have done this back then instead of the way I did it or vice versa and but you don't you can't really you can't really pick and choose during that that time.

speaker-0: you can only make the decisions, you know, as they come at you with you know the information that you have in front of you and you know medical care has definitely changed, you know, since since then to now as well. So Sandy, do you anything to add to that? Is there any support that you wish had been available when you were going through this with Brandon?

speaker-1: guess within our Angelman community, it would have been nice to have been warned by the doctors who had a good working knowledge of patients with Angelman syndrome, things that we might experience, like the behavioral changes, the seizures changing, and even with growth, the spasticity that increases and the orthopedic that were going to be coming that we did not anticipate and no one warned us about, his feet turned out and then they turned in. And that led to multiple very in-depth orthopedic surgeries that we weren't prepared for and that no one was really monitoring his body for as it grew.

speaker-0: I don't know. And I'm not I'm not, one to speak negatively against the medical community, but I also feel like so much of the information that we get or that we find out in these settings is from just other parents. That, why why are, healthcare professionals not being more direct with the things that our kids are gonna go through because it is such a hard road to navigate in, comparison to, neurotypical and just atypical children.

speaker-1: Right. I I grew very tired of those developmental checklists that did not apply to my child at all. And I felt I felt very much like there should have been a different set of questions that assessed emotional, behavioral and physical changes that were geared towards children like our children that have physical disabilities, cognitive disabilities. But there is none of that. I feel like we're always shooting from the hit, you know? And

speaker-0: Well, and it's not fair. There's just, there's no manual. And I'm a question asker. Anytime we go to the doctor and Dawson's doing something new, something else is going on, I ask. But a lot of times the response is not one that I feel like it should be in what I'm wanting the answer to be or how I'm wanting them to approach it because it's more or less like the the clinical blase, let's push it aside and move on, kind of. You know what I mean? Just I feel like that is the response in a lot of a lot of ways and that's not what it should be.

speaker-1: I just fall back on having your own support system, whether that's through a network of other parents with special needs children that, are walking a similar path or that have walked that before you, they're your greatest source of information and support because they've been through it.

speaker-2: Mm.

speaker-0: One hundred percent.

speaker-1: Yeah. And they want to pay it forward oftentimes.

speaker-0: For sure, for sure. Let me lighten your load a tiny bit if I can. I'm all about passing information on. So if they're looking back, thinking about like what you did or didn't know before, you know, each of y'all's kids started puberty, what do you wish you would have known? And is there something that you would love to tell parents who are now approaching this stage?

speaker-1: You're gonna get through it.

speaker-0: Ha ha ha.

speaker-1: I guess just reassurance. It's not going to be easy. It's going to be challenging. Recognize that, brace for it, and and reach out and ask for help because you shouldn't have to live in a vacuum and and and suffer through it. You know, there there are many others that have walked before you that can support you.

speaker-0: Yeah.

speaker-2: Totally agree with Sandy and the thing is is that just keep in mind the physicians they're all taught from the same medical book and they're not God and they can't there's not just a straight cookie cutter for for any anybody, but when it comes to anyone with disabilities, moms know best.

speaker-0: Trust your gut.

speaker-2: Exactly.

speaker-3: you

speaker-0: Okay, so real quick, before we close, there were some questions on Facebook. some of these I don't know if we'll be able to answer, but I wanted to like bring a little bit of attention to some of these moms who were willing to like post concern not concerns, but things that they're anxious about or things that are going on that they would love to have anyone weigh in on. And just between the four of us, I feel like we're all intelligent women. We should be able to answer maybe some of these questions that some of them have. one of them really is talking about a kiddo that is nonverbal, doesn't walk as G2 fabic fat, etc. some of us fit the, the bill with that one. she's curious about ho how hormones of puberty will a affect him. and then she wonders what sign symptoms come with our developmentally delayed kiddos besides the obvious BO and body hair. Do y'all feel like that there's anything else that y'all remember besides just the basic stuff that came with our developmentally delayed kids. Or do I feel like those are basically just precursors across the board for for any kid going through puberty?

speaker-1: I think that the the physical changes, the increased spasticity or the increased physical changes when you have a body that is not a typical body, you're dealing with things like cerebral palsy. There are different different symptoms that your child's gonna experience.

speaker-0: And then we had two people, I thought this was funny. We had two or three moms talk about body hair. And then just in general, how to navigate that. The itching, the shaving, all of those things. If you should shave, in the pubic region or you you should leave it alone because that can also affect cleanliness, especially when you're dealing with, you know, a female that has a period. so that that's several several moms brought up, you know, a fear about body hair in that regard. Do i either of y'all have any suggestions when it comes to that?

speaker-1: I know boy moms that shave in that area help

speaker-0: Do you

speaker-1: to help with cleanliness. we did not do that. It seems very uncomfortable. And when you have someone who who is sensory, who's very sensory, who just shaving a face is challenging, I'm not doing that. I'm not doing that. I'm not I'm not doing that, but I did find products that help with that. I mean, sometimes it can take an entire pack of wipes to do one. bowel movement, cleanup. And so I found product sprays and and foams that help with cleaning that area that do make it less challenging and help help with odor and cleanup.

speaker-0: Do you think it's a case by case basis then at that point where it's just

speaker-1: I think it's matter of preference and what your child tolerates.

speaker-0: Yeah. Yeah. Well, thank y'all for coming. If there's anything else, I mean, we we can keep talking for another hour if y'all want. But I really appreciate y'all coming and talking about y'all's experiences. And hopefully everyone's able to maybe hear something that makes them feel a little more prepared. Let them know they're not alone moving forward, depending on, you know, the stage of life that they're at with their kid. Because I think this is, I mean, it's inevitability, right? It's gonna happen. Second you have a kid, they're gonna go through people. It just it's the way of life. So I think any way we're all able to be a little bit more prepared for it is nice. Sandy might be getting a whole lot of phone calls from me when I start dealing with that with Dawson. Anyway, thank y'all so much for coming on and we hope y'all had a little bit of fun while you were here with us. It's nice to meet y'all.

speaker-2: No, nice meeting you.

speaker-1: Right.

speaker-0: So even if puberty brings changes we didn't expect and questions we don't have answers to yet, we can keep showing up for our kids with patience, honesty, and love. We'll see you next time.