Susan Hedstrom: Family Life with a Special Needs Child

This Way Up - Episode 23 - Susan Hedstrom

[00:00:00] You watch this child grow up and the milestones are harder. We call them inch stones in our community because you know, you celebrate every small little achievement. And slowly we realized that life wasn't gone or worse. It was just different. And so we made a new normal.

Welcome to This Way Up. We are bringing you engaging, informative, and inspiring conversations surrounding all aspects of mental health from the perspective of us as parents and caregivers. I'm Andrea N. And I'm Emmy Waters. When someone you care about is struggling with their mental health, this can be an incredibly stressful and challenging time.

So we're here to provide valuable resources to support you as you navigate this journey.

Our guest today, Susan Hedstrom, is a ray of sunlight in, uh, as she shares her story of her son, Jaden, who is diagnosed at birth with Prader Willi. Yeah, I love Susan's story. I love hearing how she manages. self care, which as a parent and caregiver, we all know is so important. But she also talks a little bit about the dynamics in their family as a unit, the relationship and dynamics amongst the siblings, and even how she and her husband communicate and manage their hectic schedule.

And their wonderful family life as well. So let's listen to Susan. Today we have Susan Hedstrom who is the Executive Director of the Foundation for Prater Willi Research and a mother to three beautiful kids, Jaden who's 14, Tyler who is 12, and Peyton who is 10. Her oldest son, Jaden, has Prater Willis, was born with it, and Susan is going to share with us about her story and how she is managing these three beautiful kids.

Welcome, Susan. Thank you so much, Andrea and Emi, for having me. We really, really appreciate it. I think what I would like to start with is an understanding of what Prater Willis is. And then we'll get into the family because I'm sure like many others out there, it's not a very common condition and probably many people don't know what it is.

So let's start there. Thanks so much, Andrea, and you're absolutely right. I had never heard of Prader Willi before we received the diagnosis. In fact, I had to ask the doctor who was giving us the diagnosis at the time how to spell it because it was so foreign to me. So Prader Willi syndrome, it's a rare genetic disorder.

There's nothing that the parents do or do not do to cause it to happen. It's a de novo mutation. So it just happens by chance. And we had no idea that Jaden had Prader Willi syndrome until he was born. He was sent to the NICU because he was having, um, issues regulating his temperature. He wasn't eating and he was a floppy baby.

So if you've ever held a newborn, they hold themselves together. Yeah. They're strong. Well, he didn't have that muscular tension. He was just a rag doll. And that's typically indicative that you have a genetic disorder. So Prader Willi Syndrome, the hallmark symptom, is something called hyperphagia, which essentially means that your body never feels full.

You are always in a state of, or a feeling of, of starvation. So people with Prader Willi Syndrome will go to great lengths to to obtain food. And if they are not monitored 24 7, they will become morbidly obese and have all of the complications that go along with obesity. While that might be the hallmark symptom, it actually isn't the most challenging for many of us.

Not to say hyperphagia isn't hard. It is. We have to lock our fridge. We lock our pantry. We have cameras everywhere in the house to make sure he doesn't take or steal food because that can be deadly. But we also have to manage incredibly high levels of anxiety, challenges with mental health, behaviors, and those are the aspects of this syndrome that are, in my opinion, the most challenging.

So is it primarily something that is different? about his brain that is regulating that appetite sensation? Yeah, we think there's something, um, not working correctly in the hypothalamus. It's certainly a brain circuitry issue. Uh, there's been a number of clinical trials where they have tried to address hyperphagia, but they haven't had anything that has been a, um, You know a home run at this point.

There's one drug that's in clinical trials that we're hoping will get approved Um, perhaps later next year or this year But we've already seen it doesn't, it doesn't help every person with Prader Willi. So we're still a ways away before we'll have treatments for that. The anxiety makes sense to me because if you're in a constant fear of starving, you're going to have a lot of anxiety.

What other things on from the mental health realm do you struggle with with, or does Jaden struggle with? Because he has an intellectual disability and high levels of anxiety. He's very slow at processing information and where he has gaps, he'll fill in with his own understanding, which may or may not be true.

So let's say that you're telling him tomorrow, we're going to go to Barnes and Noble. If he misses any part of that sentence, he'll fill it in with what he thinks he's hearing you say, which could cause an issue. Like maybe he heard, we're not going to Barnes and Noble. Right. And so that isn't quite an issue.

When you're working with someone who is already on a very short fuse. So with Jaden, if he if his expectations are met. So if you tell him that a certain activity is going to happen, if that activity doesn't happen, then he loses himself. He doesn't know. He can't be flexible. He can't change direction and go with the flow.

So there's certain times, for example, holidays that are particularly challenging for him because his expectations There's so much happening. School is out for several weeks. Visitors are coming. Holiday meals are different than regular meals. There's gifts. When am I getting gifts? How many gifts am I getting?

Who's giving me a gift? The anxiety around all of that is, is almost unbearable. As a first time young mom, you weren't anticipating, you found out that he had prodder Willie when he was born. Is that correct? That's right. And then I'm going to ask you two questions. One, how did you manage that? You know, I mean, that would be a hard thing to hear.

And then on the second note is, I'll just wait, that's all I'm going to ask. And then I'll ask the, I'll ask the other question later. Um, yeah, I mean, everyone's going to approach receiving a diagnosis differently. Some people put their head in the sand and ignore it. Some people are devastated, others take it and run with it.

I feel that receiving a diagnosis like this is almost. We def, we went through the seven stages of grief on this. While we didn't lose a child physically, he did not pass away, we did lose our dreams. of what we thought children would, you know, raising children would be like. I remember clearly after receiving this diagnosis, we had to leave him in the hospital that night.

Dan and I were driving home and I was just thinking about When I was growing up, my mom would always make us pancakes, something as simple as the morning, you know, weekend routine. And in my mind, we were going to have that same routine. And that was something that while small and perhaps insignificant to many, that was important to me in what I thought family would be like.

And I remember thinking, gee, we're not going to be able to have Sunday breakfast. Like our child has Prader Willi syndrome. He can't eat pancakes. We can't have these big mealtimes. And so I grieved the loss of what I thought raising a child would be. And then, you know, you slowly move past that and you watch this child grow up and the milestones are harder.

We call them inchstones in our community because, you know, you celebrate every small little achievement and slowly we realize that life wasn't gone or worse. It was just different. And so we made a new normal. I learned how to make almond flour pancakes instead of wheat pancakes. And, you know, you, you find ways to still have that, that family and that life.

It's not to say that we don't still long for what we had hoped. But, um, you know, you learn that it's just as good. It's just different. Yeah. Yeah. A new reality. So I'm just curious with the distinction in pancakes. Is that a calorie intake issue to switching almond flour for the other flour? So we chose early on that one action we would take to help combat the obesity and behaviors around food is that we would be very black and white.

With our food rules. So people with Prader Willi syndrome, in addition to being hungry [00:10:00] all the time, they cannot eat as many calories as a typical The same body size age whatnot, um, they can eat maybe half 60 percent of the calories So jayden has always been on a calorie restricted diet We started off by keeping the calories where they would just come from highly nutritious dense foods.

So rather than using Gluten based products we went with nut based products. That's not a calorie reduction, but because he was being reduced, having reduced calories in other areas overall, we wanted to get some very nutrient dense foods. Um, currently his diet is mostly a paleo diet. When we first started this diet, it was no one heard of paleo.

It was like the new diet, the fad diet. Everyone's heard of it now, but it's a lot of leafy greens, vegetables, limited fruit because it's high in sugar and proteins. But we stay away from processed carbohydrates. There's no rice, there's no flour. Um, no corn, almost keto like to it's, it's borderline keto where we manage him.

We've actually gone strict keto, but that was really, really hard. Oh, I'm sure. And right now this diet works for him again, it gives him highly nutritious foods, but it also gives us food rules. Cause again, anxiety. Yeah, you have to manage anxiety by letting the person know what to expect. When we go out to a restaurant, he needs to know what can he expect.

And he knows what he can order off of the menu. When we have strayed from this diet, even a small amount. We have had huge blowouts in restaurants. So for us, it's just really important for the behavior and nutritional management to stay very black and white. Yeah, that makes sense. He's hungry all the time.

Always. That would cause me, that would cause anyone so much anxiety and discomfort. I was really hungry this morning and I was grumpy and anxious and he lives that 24 7. Does he have also awareness of his whole situation so he can be hungry and know that it's just always that way and he's managing on a moment by moment basis.

We talk about it again. He's got an intellectual disability, so he understands his disability that he can't eat what everyone else eats. Okay. That's kind of his limit and that he's restricted to, you know, certain foods. He will always ask, you know, is, did I give him enough in his meal? If there's extra food, so we, we don't serve anything family style.

The food is always on the counter or on the stove and we bring our plates to the table. If there is additional food. Remaining on the counter of the stove. He will say I'm hungry. I'm really really hungry. No, I'm really, you know He'll just keep reinforcing how hungry he is Hoping that we will give him additional foods We've kind of gotten around that a bit by making I pre make meals on sunday.

I make 10 meals. Oh, wow So that he's got lunch and dinner every day pre packaged. He knows what he's getting Breakfast is always the same. I make that in the morning and that has really allowed him to be, um, I guess it was food secure, should know what's coming. He knows what he can expect. It's always ready.

He wants to eat right at five o'clock, whether the family's ready or not. Not a problem. He's got a pre made meal. I would imagine as an infant. That had to have been tiring because Oh my gosh, that's true. Yeah. They can't communicate and they don't have the intellectual ability to even, you know, process.

They're just hungry. They cry when they're hungry. So, for better or for worse, it, hyperphagia, um, begins in childhood. Typically around eight years old. So they actually are born with failure to thrive. They don't eat. Oh. And a lot of times, like Jaden came home with, it's called a nasal gas, an NG tube, nasal gastric tube.

So a tube that went through his nose down into his stomach. And if he couldn't finish a bottle, which he never could, the remainder would be tube fed. Oh gosh. So as a baby, we had to monitor how much food he was getting to make sure he was getting enough. And then as he became older, you know, the hyperphagia started to set in, you know, looking back, it was really hard to gauge exactly when he started getting a lot more hungry, but definitely by 10 is when we started to see like that, that switch.

It's interesting to think like in your family, um, anxiety for Jaden is related or associated with the overall condition. So you know why, you know, you know where it's coming from. And so his siblings also know where it's coming from. How does that affect how everybody in the family? addresses an outburst or anxiety?

So the children, they're getting to an age now, his typical siblings, where they will try to help a little bit. Sometimes, sometimes it's helpful, sometimes not so much, you know, and when there are meltdowns, typically it's okay. You have siblings go to your rooms, go downstairs, like remove yourselves. And Jaden and I will go up to his room where we kind of manage that, that meltdown.

Yeah. How does that, like in Andrea and your family too, did, did your other kid help your other child? If they're having it, you know what I mean? Like in our family, it was just me and me and the kid. I don't remember anyone else helping because they couldn't relate or jump in. In my case, my kids were there.

their issues were so different. Yeah. That they couldn't understand. Jake's came from a place of organization and being everything having to be black and white. And Kate's came from a position where she was very chaotic. So when they were younger, there was a complete misunderstanding between the two of them.

So I couldn't have them. around one another. Now that they've gotten older and they can be more empathetic with one another, I think they've really helped each other as they've gotten older. But when they were young, I couldn't, it, it was, it was me. And then, you know, yeah, it was just, it was really me and the child.

Because I think also too, it's, it's gotta be, I mean, we all know with anxiety that there's, it's, it's stimulating too. So if you have other people around, there's just that additional stimulation. So if you can just separate yourself, you're bringing some of that chaos down. Yeah. I was just wondering, like in Susan's family, since everybody knows why and what literally is causing this, you know, um, Yeah.

If that got granted him extra grace or something in a sibling dynamic. No, definitely not. I will say like the sibling dynamic absolutely changes with age, right? So what the, what the dynamic was two years ago is very much not where what it is today. For example, when the kids were younger, they relied, everyone relied on me for snacks and for meals.

Right. They didn't know there were locks on the fridge or the pantry because they weren't getting their own food. Now that you know, they're 10 and 12 is for the last couple of years, they have been in charge of getting their own snacks or they want to get an apple from the fridge. But there's locks on all of that.

So um, you know, my husband, he blessed his heart. He's, he's fabulous when it comes to technology, he was able to put a key code on the pantry. So you just put your thumbprint on it. And so the kids can open it up. So it's, it's a little less invasive than, uh, what it used to be, but still like they have to take a lock off the fridge if they want to get anything, anything out.

That is very foreign and it should be. No one should have to have locks on the food, but that's normal in our house and they've just kind of grown up with that. You know, they, I can see as they're getting older, they are trying, they see my frustrations sometimes, you know, with the anxiety and trying.

Every night Jaden has to ask me for a half an hour if this is infected or this is infected or this is infected and the kids will try to intercept, right? Because they know how frustrating it is and it's, it's kind of cute because we're working together, but it's also. you know, kind of disheartening to know that your children are trying to help you as the parent, right?

You as a parent want to be helping your kids, but I think, you know, over the next couple of years, They're going to grow into being some really great, empathetic individuals, and they're going to know how to help people. They pick up on people with disabilities pretty good, right? We have, we have stories at our house like, Oh, I think this kid in my class might have the, you know, have a disability.

They don't know what the disabilities are. That doesn't really matter. But we always talk about, well, be kind to those people, help those people. If they're struggling, you know, how can you help them? Emi and I talk about that a lot. Like when we look back on our kids, we have got some very empathetic kids.

And I think kids that go through challenging times as youngsters. They are so much more intuitive. They can pick up on those things and they're learning lessons early on, on how to be better humans that a lot of us don't, you know, didn't have that exposure to until we got older. Absolutely. You know, I mean, and, and giving grace, I think that's the other thing is they give grace a lot easier than, you know, those that don't have those challenges.

We talk a lot about [00:20:00] how people think differently. So, oh, that person is being mean or that person is annoying and well, maybe that person is struggling with self regulation. Maybe that person is anxious. So it's really, you know, we are purposely teaching that people think differently and react differently and that's okay.

That's amazing. Everybody should incorporate that. Right. Rather than just saying that Kurt, that guy's such a jerk, you know, he's excluding me from this or, you know, all these signs of insecurities or other things and kids, but how awesome that you point that out for your young people. And there's such a great ages too, to really keep those ideas in mind rather than judging the outward behavior that's coming at them.

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So I just have to ask you, Jaden's your oldest and he had a pretty serious, um, condition, but you didn't shy away from having additional children. That's amazing to me. When You're given this diagnosis, you, you, well, when you have any child, I think, with special needs, you realize how common special needs are in children.

It actually really made me appreciate how risky every pregnancy is. It's not just Prader Willi or Down syndrome, which, you know, is much more common, but cleft palates, club feet, you know, autism, there's so much risk. And we didn't really, um, shy away from having other children because we knew, you know, we had always wanted to have two.

And then we just got lucky to have a third, and I really appreciate having three, because I think that the typicals can lean in on each other. The typicals, the typicals. Yeah. It's, it's hard having a special someone in your family and your nuclear family. And while I love to think that my relationship with my children will always be lovely and we'll be able to talk about everything.

The fact is that they're going to need each other to talk about this with, but there's going to be times when they can't talk to mom and dad about their brother. because they're kids. So I'm really glad that they will have each other when needed to have those conversations. Yeah. What a great point. What about you and your husband?

How does, how has that journey been in your communication and coping and what roles you each play? Marriage is fun and marriage is hard, right? I think you throw anything additional on top of it. But in our experience, having Jaden has just made us work harder together. We talk a lot that we need each other.

This is not a one parent job, you know, the burnout, the fatigue, the caregiver stress is real and we need to be able to tap in and tap out. So having each other to be able to rely on and do that is important. I mean, there'll be days when we're tapping in and tapping out every 20, 30 minutes because it is fatiguing, but that's how we're supporting each other.

There'll be a day when Jaden's had a massive blowout and it takes. 24 to 48 hours for me to recover. The PTSD is real and he'll be there. He'll see, Oh, you had to go through this. Let me take a turn and I'll take the other two kids out for the day or vice versa, you know, if he's been at home and there's been a blowout that I come in and help him get that relief that he needs.

So I think when you're working together towards a common goal, right? Like we're both supporting each other to support this. person. In our case, it's Bruce brought us together. That's tough though. That's a lot. What do you do for self care? How do you refresh and revive? What do you do when you tap out? You tap out.

Oh, Red Set's a lot. What was that? That's a local restaurant with a bar. It's close enough, but out of the house. No, you know, I like taking the other two kids out. They need to get out too. We do a lot of dividing and conquering. Uh, you know, anxiety, again, anxiety is high. Getting Jaden to go out with the rest of the family can be tough.

He really does well one on one, much less so when he has to go with the flow. So, we, we do a lot of, you know, taking the other two, they're, they're insane. They're in such a fun place right now. For Christmas, they wanted to have experiences. So we took them to Ruth Chris for dinner. Oh my gosh, that's amazing.

I'm going to tell my kids you said that. Yeah, they wanted to go to dinner and they had, they'll tell you all about it. They had the best time. Like they really appreciate getting a chance to go out with mom and dad, just the four of us. See, that says a lot about your family dynamic already. That's amazing.

I gotta stop saying amazing. I need a new verb. I mean, well, that leads me to the necessity for respite. We started using respite around four or five years ago. So if you're not familiar with that term, if you have a child with special needs, you are likely working with the San Diego regional center. And one of the services that they can provide you with is respite hours.

So they pay a company. Who will arrange for a babysitter to come to your home so that you can leave. Jayden, despite being 14 years old, cannot be left home alone, ever. You know, we might leave them for 10 minutes. We have the cameras on, the locks on, and we're sweating the bullets the entire time. So we leverage respite so that we can take the other kids out.

And we do this almost every Friday night. And, um, when we first started doing this, You know, there's a lot of mommy guilt. My husband vocalized. He didn't want to leave Jaden behind. We're a family and we should all be together. And let's try it for a month. Let's see how it goes. And we learned really quickly.

Jaden loved being home alone with his, not alone, but with his respite person. He loves one on one time, even if it's at home. And this person is coming in fresh and all, you know, happy to listen to all of his stories. He'll sing karaoke for you. Um, He's having a great old time. We're going out. We're not having blowouts.

We're not answering his questions all night long. We're able to just focus in on the other kids. They're happy. We're happy. We're relaxed. And then when we all come back together for the rest of the evening, everybody has had exactly what they wanted. Yeah. Sounds like a phenomenal program. And it's for, is it free?

It's free for, yes, the regional center pays. The hourly rate for the individual who comes into the home. Does your son mind if it's a different person each time? Well, for consistency, like for training purposes, we need to use the same person. So currently we have two people that we rotate with and I found them actually, they're, they're local neighbors and I, they filled out the paperwork so that they could be our respite providers and they get paid to watch Jaden.

Oh, so there's somebody that you actually hire. They're not somebody through the organization. They do have respite people that they can find for you. I just found that I had better luck with consistency when I use people. I knew, wow, that's a fantastic. Is this, um, something that you've heard is a, um, available in other states and other cities?

It depends on the regional center. Regional center is a part of California, so any Californian has access. Well, if you have a child with a disability and you're connected with a regional center. You have this access. I don't know how other states work. That'd be something to look into for people that are out of state.

Yeah. I just think it's so important for families to be able to meet the needs of all of their kids. I think oftentimes we feel that we're a family, a nuclear family, and we all have to go and do everything together. That's what families do. And the neurotypical family, that works. your kids don't have to w but that's what we do.

Wh with incredibly high leve is so hard for them to ho even get out of the house that and you try to force That person with anxiety is miserable. You're torturing them. And that's exactly, you know, we were torturing Jaden by forcing him to go out. And he'll tell you, he's like, I don't want to do this because I don't want to have a bad day.

That's how he vocalizes. I don't want to have a bad day. I don't want to blow up. I don't want to go out. So we've just learned, like, just like you would if you had a brilliant child. You, you would treat, you know, you would give them different opportunities. Well, here's a child with incredibly high levels of anxiety.

They need different opportunities. Yeah. And your other kids probably really appreciate that too because I'm sure there's anxiety on their part too when they're anticipating [00:30:00] Jaden being uncomfortable and then having some sort of an anxiety or panic attack. I'm sure that's a, you know, underlying fear of theirs.

So you being able to give them that opportunity to go out alone with you and your husband is really normalizing their, their family experience. Absolutely. And you know, as kids hit the teenage years, they become more socially conscious, aware, easily embarrassed. I mean, it's stressful and frustrating when you're dealing with a public blowout, you know, the kit and if I can prevent my kids from having to go through that, I'll, I'll absolutely do my best to help them avoid it.

Yeah. Susan, earlier you said something about the PTSD is real, and Andrew and I have talked about things like that too, and, and I'm sort of ashamed to say that I probably use that term flippantly, but when you say it, what does that mean to you? How do you experience that? How do you deal with that PTSD?

Great question. I don't, I don't know if I deal with it the best, but time helps, frankly. Um, you know, we had, we had scheduled this podcast. Couple months ago, and Jaden had massive low. I was like, I just I couldn't in that moment. I could not do a meeting like this. There's no way I could function to work. I had a very I made a very light work day, right?

I just gave myself grace in that moment and realized like I, I was not able to focus. So going for a run, working out, those are things that help me feel centered. So I try to incorporate that regularly into my day, meaningful conversations. Are helpful talking it out with my husband, right? This this is what happened today This is those are all things that I think yeah, what is it?

because it's so and andrea too you answer but what does that feel like because I I can't say I literally have ptsd, but I do say that because sometimes something's triggering it takes me back to something that caused me a lot of fear, but What do I mean either of you say about a trigger and where that's coming from and what that ultimately means?

You For me, I just, I get like the feeling in my body because, you know, we're, we're a few years beyond that and the feeling gets in my body that, oh, you know, I kind of tense up and my stomach gets sick and then I look back and I say, okay, that is not, for me, it's not an appropriate reaction to the situation as it sits today.

I think yours, Susan, you speak, you're, you're so close to it. Right, right, right. So I would, you know, be curious too as to how do you, you must exhaust, I mean, what symptoms are you feeling? So certainly a shortness of patience. is one. So because the, I want to say attacks, it's not an attack, but it's an attack on your system, right?

It's, it's constant stimulus, negative stimulus coming from his anxiety questions, um, trying to calm him, trying to prevent him from escalating. Trying to get through the repetitive questions because they are always coming. I'm always on the defense. Yeah. That's a good way to explain that. You can probably imagine that.

Yeah. I'm always on the defense. So as soon as he's coming in, it's like deep breath and prepare because you know, and that's, it's a horrible feeling to have. That's not how you want to feel when your child is approaching you, right? You want to be open and receptive and, and ready for conversation. And yet I live in this state of the opposite.

Yeah. Right. It's. anxiety of what's, what's coming. What, what's it going to be this time? Yeah. It sounds like a lack of power that you have, you know, being on the defense. Uh, you know, it's, it's funny. And this is probably true for even your typical nuclear families, but I always felt as a child, at some point you get to be the adult.

And you get to make the decisions? No, no. It's a lack of control. I get to make some decisions, but, but no, we, our whole family is, is really at his whim. If he decides he's not going somewhere, you cannot get those kids to school or to their practices. He dictates whether or not we can go out to dinner as a family, whether or not we can do a family trip.

Everything is dictated by his willingness or unwillingness to participate. And, you know, that's why respite is so, you know, valuable here. Because without that, you know, we use it so I can take the kids to their afternoon practices. Or he'll refuse. It's like, sorry guys, you guys can't go to practice today, Jaden doesn't want to go.

Susan, you, you come from a, a place that I think so many people are going to relate to because as you're speaking, before Kate understood or could really regulate her emotions and understood her anxiety, that was the exact place that I, that I lived in was this constant feeling of being attacked and it is so hard on your mental state.

In your nervous system. Yeah. Yeah. Yeah. Oh, you're nervous. I mean, just, I would shut down. I would remember just like after she would have a panic attack that I would have to go to sleep and I would sleep for hours. I was so exhausted because my system was just being attacked. I think that the respite is, I didn't know anything about that and we may not have been eligible for that anyways, but I just always took everything on my own shoulders, that I was going to do it all and that, and I don't.

at the time, realize how hard that really was. And I wish I would have allowed others into my life to take on some of that burden, including my husband, quite frankly. Yeah. I always try to pay it forward when I can, because I know there is going to be a time when I'm going to have to call on you to help me.

You know, it's, it takes a village. Yeah, you really do need a lot of people on your side in those situations. That respite sounds like an amazing opportunity to, to have one thing per week that you know is scheduled that the whole family can look forward to. And clearly your self care and your ability to tap out is Equally as important on a day to day basis, are there any other times where you schedule and you know you have this to look forward to or this time for yourself just in a day to day space?

My gym time. You do? You get that every day? I don't have my gym time. Oh, good. Yeah. I try. I mean, there, there's some days that you just can't make it happen, but most, most days I will move hell and high water to get there. Yeah. Andrew too. That's What does your husband do for his self care? He rides a bike.

He, he loves to, you know, go cycling. That's, That's his, uh, thing. We don't have too many men on this, but we eventually, we would like to get some because I, I think it's important too. We have our perspective on things and, uh, they manage things so differently and have, and so I think it would be very interesting to hear how they, how they manage all of this.

And what would your husband say about managing himself, the family with how you communicate between the two of you? I don't know. I hate to speak for him. Voices me, you know, I think he works so hard, but he will drop everything to be here when needed. Right. I'll text him. I'll be like, don't call me right now because we're in the middle, but I want, I just need you to know I'm going to need to vent later and home and I'm like, no, you, by the time you get here, it's going to be over, but I will need to vent about it.

A lot of couples say that they maintain different lanes. Like mom often stays in the lane of the kids and the house and dad stays in a different lane. So I was just curious. We do that when it comes to school, but we're not going to go on the record for that one.

So what's the future for Jaden? What does his future look like? What is your future look like with him? Yeah. Yeah. So. I always tell people who have children with this syndrome, don't look too far ahead because it can be, it can be daunting. Our hopes, of course, is that through the funding, through the Foundation for Prader Willi Research, that we're going to find treatments that help our loved ones be more independent.

Without those interventions, Jaden will not live independently. He will struggle daily to have the right caregivers in place to manage him. He may live in a group home. He may live with us. We may be able to put him in a home with a caregiver, but he will always require 24 7. Unless treatments can be found.

Is it common for them to have the intellectual disability along with the, with hyperphagia? Is that what you called it? Yeah, it's a spectrum disorder. So some will have higher intellectual capacities than others. Hyperphagia also comes on a spectrum. All of, all people probably really will overeat if not monitored, but some are more, um, aggressive with their food seeking.

So food seeking is. You've locked up the environment because you know that they will, they will literally eat themselves to death. We have stories of people eating themselves to death, so we have to lock up all food sources, including garbage cans, you know, rotten food that is food. Oh, no kidding, kidding.

And in their eyes. [00:40:00] So, you know, but it's, it's a spectrum. So some will seek out. Food and garbage cans. Others will not. Some have, you know, great articulate speech. Some do not. Like it's just all of these different, um, symptoms that there's a huge spectrum. So depending on somebody's intellectual capacity, they might be able to self regulate those, the urge to eat or the compulsion to eat.

Not likely. Oh no, not at all. That sounds so incredibly torturous to be that hungry all the time. I, I just can't, I can't imagine what that would be like for him. I get stressed out if I'm hungry and I can't access food. So my kids make fun of me cause I have food everywhere in my purse, in my car, cause I can't, I would hate the feeling of being hungry for more than 10 minutes.

So I, I just feel for your son that that's his, moment by moment. It's a small thing. I would love to have like the fruit bowl on the counter, right? You know, the pretty fruit bowl as part of your decor. No fruit bowl on my counter. Like, there cannot be any food out. So community is such a healing thing. I mean, we've talked about it.

even in this conversation today. Is there a community for him so that as, you know, now he's 14, he's got, it can give him any kind of, okay, this is somebody who understands where I'm at? Because it's rare, there's not many individuals with this specific syndrome in the area. There's probably a dozen, but I don't know, they're not all identical, like I don't know who they all are, I don't know where they are.

So he does not have a group of people with Prader Willi Syndrome to surround himself with. That said, he prefers typical people. Um, it's been a huge issue with school because he doesn't want to be in the special ed classroom, he wants to be in the typical classroom. Yet he can't perform in the typical classroom.

Yeah. There are some really amazing programs in San Diego that incorporate special needs children in such an impactful way. Have you sought out any of those or yeah, how do you even go about deciding what is the best school situation for him? So let's talk about a program because I have to give a huge shout out to the shooting stars.

It's a basketball league for people's special needs. It was 10 weeks this past fall. We just got connected with it. I think that's national, isn't it? Yeah. Yeah. It might be sounds familiar. Okay, we had, you know, we did it right here in San Marcos. It was the most lovely program ever. Jaden loves basketball.

He's in our backyard constantly shooting hoops, but he cannot play on a team. He cannot play games because as soon as the game starts, you're keeping score. And he's. Tracking the score and he forgets about the game shooting stars, they partner every child or adult because it's all ages with special needs with a neurotypical buddy and the two of them get to play together.

So you're playing with this team of people with special needs, but you're also playing with your buddy and Jaden had the most fabulous time. We've typically had a blowout at any program we've ever done, and this was the first one that he, he belonged, he fit, he loved it. Next year he wants to be the buddy.

Oh, nice. That's so cute. What do you think made the difference? Is it having that, that neurotypical person that he's relating to? I think so. Oh, wow. I remember in high school doing a special Olympics where, where I was, I was a buddy for somebody in special Olympics. I remember doing that once and you, you forget.

How important that really is and how, how meaningful that relationship can be to those buddies are so incredibly important if, if we can get more people to know about buddy opportunities, you know, I, I think it provides it's a win win for both parties, right? It's a win for a person of special needs because they've got a really cool buddy to hang with.

And it's a win for the neurotypical individual. They're giving their time. They're making someone happy. for having me. You know, for all of these kids looking for community service for their college applications, what a wonderful opportunity to, to give back to the community in that way. These people with special needs, they really need it.

I don't know. Someone reported me about shooting stars. I had never heard about it before. And so we, we ran with it. I mean, we're within this community and I don't hear about the opportunities. So I don't, I don't know. Special Olympics is an easy one. You can Google that. True, true. Yeah, that'd be something fun to put on our website, Andrea, just linking people to opportunities like that.

I would bet if you Googled, because the buddy system seems to be a generalized term or one that's easily recognizable within that. But, um, yeah, no, I think that would be great. Yeah, makes a lot of sense. She was talking about Cathedral High School here has a program where the, um, they've got children in, what's it called?

The options program, I think, where they got options program. Yeah. They buddy them up a child for each class and all of the, uh, I can't remember what they call it, mentors or something. They go through some training and then they do events outside of the classroom like, um, you know, they have like a beach barbecue.

They make, they, so then the, the special needs kid could go to dances and they know some people and they're being taught the dances and everything. It's really, um, it was, it seemed like a very special program. Yeah. And at the base of it all, it's about connection, being seen and accepted. Yeah. Powerful. We took Jaden, um, just a, a little warm filled story.

We took Jaden on the eighth grade trip. I went as a, um, chaperone, chaperone as an adult, I was wearing the adult costume. It was one on one with him as a chaperone. And one of like the final nights is they all go out on a, like a dinner cruise boat. And Jaden was Struggling. I mean, this is anxiety, right?

You're on a boat. When is dinner? What am I having for dinner? Like he almost didn't get on this boat. In fact, he did get on the boat and he almost jumped over the boat. Like he needed to get off, but he stuck through it because of some typical peers, some wonderful boys invited him to their table, the bad kids, right?

Sweetest kids ever. They were so welcoming of him. And then the music started and he has great self confidence. He was one of the only boys out there dancing when a sea of girls dancing, the girls holding his hand. He had the best night ever. And that's what is made possible when you have. You know, your neurotypical peers that are out there with empathy and love and willingness to accept.

their differences and bring them into the fold. That's awesome. It sounds like in that moment you're describing of him having anxiety in that particular situation, it was a distraction, a compelling distraction that he bought into that took him out of his anxious mode at that time. Does he have other coping skills or strategies that he adopts that he can use or that you can coach him through that also help him make a shift?

It depends on the moment and it depends on where we're at at home. He spends a lot of time doing color of my number on his iPad. It's kind of like a stimming, self soothing type activity for him. Really for him, it's limiting stimulus. So keeping it close to home, keeping it quiet is helpful, but he also needs, it's ironic.

It's like he, he needs. activities, but not too many activities. He needs some structure, but not over the top structure because you have to be flexible with him. Like he's this constant back and forth struggle. You must be such an amazing resource to other people in your foundation, other parents that are going through this at an earlier stage in their kid's life.

How does your foundation work to support other families? So we are research focused, um, truly, so we are looking to find and fund the best research in the world, but knowing, having lived this experience of being newly diagnosed, one thing I thought was really important was putting together what we call the package of hope.

It's stories and pictures Willi, giving guidance to new parents. And that was something that I felt was really important to give to this community. You know, we're told from the very beginning all the things our kids are not going to be able to do. They're not going to be able to live independently.

They're not going to be able to go to college or drive a car. They will not be able to have children. You're like, okay, well, I've now been given this pile of things that my kid is not going to be able to do. Well, what will my child be able to do? And so we kind of flipped it on its head and said, yeah, we go out to dinner and this is how we manage it.

And we go on vacation and this is how we manage it. Just so that people can see that, again, your life isn't over, it's, we have to make accommodations just like you would make accommodations for someone who was in a wheelchair or blind. You have to make accommodations for this person who has anxiety.

It's a little less visible to the untrained eye. But it's there and it's a disability and you have to accommodate that your perspective is is really inspiring it's really[00:50:00] 

Believe it or not it is It is and and for anyone that's only going to be listening to this podcast and not see your face I have to say you are smiling this entire time. Yeah. Oh, thank you Yeah. I think you said it at the very beginning and I think it's a great way to sum it up is that you are given something that changes.

what your dreams were, but it doesn't mean that your dreams are gone. They're just different. They're just different. Yeah. And Jayden is a blessing. He's a blessing to your entire family. He has taught us all so many lessons. He really has. He really has. Thank you so much for sharing your story. Um, I think it will resonate with me.

with a lot of us in our community.

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