1 00:00:00,000 --> 00:00:12,640 Welcome to Unlimited Parenting, where we discuss parenting children with disabilities or special 2 00:00:12,640 --> 00:00:13,800 health care needs. 3 00:00:13,800 --> 00:00:20,120 My name is Allison, and today I am so excited to be joined by Executive Director of We Are 4 00:00:20,120 --> 00:00:25,280 Brave Together and author of Becoming Brave Together, Jessica Patay. 5 00:00:25,280 --> 00:00:28,840 So let's jump right into the conversation. 6 00:00:28,840 --> 00:00:33,680 So welcome, and thank you so much for being here, Jessica. 7 00:00:33,680 --> 00:00:39,760 I will, before we dive deep into all the questions that I have regarding your book, I was really 8 00:00:39,760 --> 00:00:45,280 hoping that you could start us out by telling us a little bit more about your personal journey 9 00:00:45,280 --> 00:00:49,880 with your son, I believe, but I'll stop talking or we'll give any spoilers away. 10 00:00:49,880 --> 00:00:52,840 I'll let you take it away. 11 00:00:52,840 --> 00:00:55,080 Thank you so much for having me. 12 00:00:55,080 --> 00:01:00,920 Well, my story as a caregiver begins with the birth of my second son, Ryan, who is now 13 00:01:00,920 --> 00:01:02,280 almost 21. 14 00:01:02,280 --> 00:01:04,960 I cannot believe it. 15 00:01:04,960 --> 00:01:09,340 And when he was born, he was born with low muscle tone, so he didn't cry. 16 00:01:09,340 --> 00:01:10,340 He could not suck. 17 00:01:10,340 --> 00:01:11,400 He could barely move. 18 00:01:11,400 --> 00:01:15,040 We spent a month in the hospital not knowing what was going on. 19 00:01:15,040 --> 00:01:20,840 We were working with an OT that specialized in feeding, and we were doing tube feedings 20 00:01:20,840 --> 00:01:26,260 and hoping that he would kind of wake up and get stronger. 21 00:01:26,260 --> 00:01:28,320 And that didn't happen. 22 00:01:28,320 --> 00:01:29,760 And I really needed to go home. 23 00:01:29,760 --> 00:01:34,720 I had a two and a half year old at home and my husband also needed to go back to work. 24 00:01:34,720 --> 00:01:37,560 So I said, just give him a feeding tube. 25 00:01:37,560 --> 00:01:38,760 Just train us. 26 00:01:38,760 --> 00:01:40,000 We will learn. 27 00:01:40,000 --> 00:01:41,000 We need to go home. 28 00:01:41,000 --> 00:01:42,560 We need to take our baby home. 29 00:01:42,560 --> 00:01:44,520 And we were doing all sorts of testing. 30 00:01:44,520 --> 00:01:50,760 And about a week later, we got a diagnosis, thankfully very early on of Prader-Willi syndrome, 31 00:01:50,760 --> 00:01:53,320 which is a rare genetic disorder. 32 00:01:53,320 --> 00:01:58,520 And when you read about it, it is a crazy mix of symptoms because you start out with 33 00:01:58,520 --> 00:02:03,160 a baby who has, you know, quote unquote, failure to thrive because he can't suck and he doesn't 34 00:02:03,160 --> 00:02:07,320 cry for food and he doesn't wake up to eat. 35 00:02:07,320 --> 00:02:13,400 And then it switches into this insatiable food drive that kicks in in childhood. 36 00:02:13,400 --> 00:02:19,360 So Ryan's early years in the early years of PWS are very much focused on milestones. 37 00:02:19,360 --> 00:02:26,960 Most babies and toddlers will have occupational therapy, physical therapy, speech therapy. 38 00:02:26,960 --> 00:02:35,720 And then if you have an endocrinologist that is in support, growth hormone is also indicated 39 00:02:35,720 --> 00:02:36,720 in PWS. 40 00:02:36,720 --> 00:02:41,300 So Ryan started growth hormone shots when he was 10 weeks of age. 41 00:02:41,300 --> 00:02:45,060 So the early years, like I said, it's all focused on milestones. 42 00:02:45,060 --> 00:02:50,840 And then in childhood, this crazy insatiable food drive kicks in that's life threatening. 43 00:02:50,840 --> 00:02:55,800 So kids and adults with this syndrome do not have any signals in their body that tell them 44 00:02:55,800 --> 00:02:58,440 that they've had any food. 45 00:02:58,440 --> 00:03:02,400 So without supervision, without locks on the kitchen, they could eat themselves into a 46 00:03:02,400 --> 00:03:05,960 medical emergency and sometimes even premature death. 47 00:03:05,960 --> 00:03:10,720 So it's a life threatening rare genetic disorder. 48 00:03:10,720 --> 00:03:18,920 It is a spectrum, so how kids are affected in PWS in terms of cognition and medical issues, 49 00:03:18,920 --> 00:03:22,680 physical issues, speech, and the food drive. 50 00:03:22,680 --> 00:03:29,000 The food drive is there for everyone, but it might be displayed stronger in some kids, 51 00:03:29,000 --> 00:03:31,440 lighter in some kids. 52 00:03:31,440 --> 00:03:35,680 Ryan doesn't break our kitchen apart trying to get food. 53 00:03:35,680 --> 00:03:39,040 He doesn't go to the neighbor's houses looking for food. 54 00:03:39,040 --> 00:03:42,800 He does sometimes dig in the trash, but he's not doing that everywhere. 55 00:03:42,800 --> 00:03:44,660 Thank God. 56 00:03:44,660 --> 00:03:49,040 And today he is in the transition program with our school district until he's 22. 57 00:03:49,040 --> 00:03:52,280 We have another year in the bubble, as I say. 58 00:03:52,280 --> 00:03:57,440 And then after that, the next transition feels very scary because we've had a plan since 59 00:03:57,440 --> 00:03:59,920 he was three that he would be in the school district. 60 00:03:59,920 --> 00:04:04,880 So the next season feels scary, but we will figure it out. 61 00:04:04,880 --> 00:04:10,280 I say that Ryan is my greatest teacher and he is also the reason that I started We Are 62 00:04:10,280 --> 00:04:12,660 Brave Together. 63 00:04:12,660 --> 00:04:17,320 It sounds like in your specific situation and your parenting journey, it's a lot of 64 00:04:17,320 --> 00:04:24,840 constant vigilance being on all of the time and making sure that everything is safe. 65 00:04:24,840 --> 00:04:30,760 Is that kind of where that term that I read in your book, extreme caregiving comes from? 66 00:04:30,760 --> 00:04:31,760 Yes. 67 00:04:31,760 --> 00:04:38,280 Yes, there are a lot of caregiving moms that live with such an extreme vigilance because 68 00:04:38,280 --> 00:04:47,080 their child either medically is fragile and requires so much or behaviorally or emotionally 69 00:04:47,080 --> 00:04:54,020 and mentally are fragile and require so much time, so much attention, so much attention 70 00:04:54,020 --> 00:04:58,840 to safety and care and caregiving tasks. 71 00:04:58,840 --> 00:05:03,680 That's where I came up with extreme caregiving. 72 00:05:03,680 --> 00:05:09,160 That terminology really, really spoke to me and my parenting journey as well. 73 00:05:09,160 --> 00:05:15,320 So kind of having someone who can put what you're feeling into words really felt like 74 00:05:15,320 --> 00:05:16,560 it empowered me. 75 00:05:16,560 --> 00:05:18,360 So I just want to say thank you for that. 76 00:05:18,360 --> 00:05:24,320 Oh, I'm so glad to hear that because that is our hope that fellow parents will feel 77 00:05:24,320 --> 00:05:29,560 empowered by reading everyone's stories, that they'll feel seen and heard and understood 78 00:05:29,560 --> 00:05:32,920 and validated, validated, validated. 79 00:05:32,920 --> 00:05:34,180 Absolutely. 80 00:05:34,180 --> 00:05:38,840 So I'd like to also hear a little bit about the nonprofit that you founded. 81 00:05:38,840 --> 00:05:43,100 How did that, I'm assuming it started from your son, but can you give a little more background 82 00:05:43,100 --> 00:05:44,100 on that too? 83 00:05:44,100 --> 00:05:45,100 Yes. 84 00:05:45,100 --> 00:05:48,160 Well, I say that connection and community saved me. 85 00:05:48,160 --> 00:05:53,680 My husband and I jumped into diagnosis specific support groups where Ryan was a baby. 86 00:05:53,680 --> 00:05:59,640 Thankfully they had something in Los Angeles and we found families that we connected with 87 00:05:59,640 --> 00:06:01,560 that we are still friends with to this day. 88 00:06:01,560 --> 00:06:13,200 We had mentors, we had support resources, education, and it was such an exhale of anxiety 89 00:06:13,200 --> 00:06:17,960 and fear when we found community and resources. 90 00:06:17,960 --> 00:06:21,640 And I am somebody who is all about the friendship of women. 91 00:06:21,640 --> 00:06:27,920 I believe so strongly that when we leave behind, you know, cattiness and competition and comparison 92 00:06:27,920 --> 00:06:31,480 that the intersection of our lives is a gift. 93 00:06:31,480 --> 00:06:38,040 And I knew I wanted to do something for caregiving moms, special needs moms, and I just didn't 94 00:06:38,040 --> 00:06:40,360 know what it was going to be. 95 00:06:40,360 --> 00:06:45,400 And so my hands were kind of open and I was just dreaming and hoping for an idea to land 96 00:06:45,400 --> 00:06:47,080 and it certainly did. 97 00:06:47,080 --> 00:06:53,720 And I knew that I benefited so greatly from community and also from getting what I call 98 00:06:53,720 --> 00:06:58,320 mommy breaks, you know, taking weekends off, having date nights with my husband. 99 00:06:58,320 --> 00:07:03,920 And I thought, okay, what if I create a community so that other moms don't have to create community? 100 00:07:03,920 --> 00:07:07,240 They're exhausted, they're isolated, they're tired. 101 00:07:07,240 --> 00:07:12,200 I'll create a community where they can just show up and we will create opportunities for 102 00:07:12,200 --> 00:07:16,000 moms to gather because we believe in the power of gathering. 103 00:07:16,000 --> 00:07:21,560 Whether that's a support group or an event, a half day retreat or a weekend retreat where 104 00:07:21,560 --> 00:07:25,880 they can be surrounded by other women, other mothers who get it. 105 00:07:25,880 --> 00:07:30,540 And you don't have to over explain and you don't have to apologize for your feelings 106 00:07:30,540 --> 00:07:37,400 or your grief or anything that you're going through, the highs and the lows and we will 107 00:07:37,400 --> 00:07:40,760 be there and it will be a safe, sacred space. 108 00:07:40,760 --> 00:07:47,680 And I think that that is so powerful, especially for families who maybe don't have a network 109 00:07:47,680 --> 00:07:49,520 built around them already. 110 00:07:49,520 --> 00:07:53,760 Maybe they don't have family close or they've just moved to a new state and they don't have 111 00:07:53,760 --> 00:07:54,920 tons of friends around them. 112 00:07:54,920 --> 00:07:59,360 They know that they have this place where they can go versus, you know, when family 113 00:07:59,360 --> 00:08:02,760 might come over and you have to say, oh, I'm so sorry, yeah, this is locked away because 114 00:08:02,760 --> 00:08:04,720 I'm supporting my son. 115 00:08:04,720 --> 00:08:07,920 There's none of that explanation like you said. 116 00:08:07,920 --> 00:08:13,400 And another thing that you said really reminded me of another quote that I loved, which is, 117 00:08:13,400 --> 00:08:15,840 I'm going to read it so I'm looking off to the side. 118 00:08:15,840 --> 00:08:21,100 The loneliness of onliness is detrimental to our mental health. 119 00:08:21,100 --> 00:08:27,200 And it feels like the space that you've created really makes sure that your mental health 120 00:08:27,200 --> 00:08:30,320 as a caregiver is really supported. 121 00:08:30,320 --> 00:08:32,040 Yes, yes. 122 00:08:32,040 --> 00:08:36,580 That's our whole goal is to preserve and protect the mental health of caregivers by everything 123 00:08:36,580 --> 00:08:42,040 that we do, the content that we put out, our podcast, our retreats, our connection circles, 124 00:08:42,040 --> 00:08:45,640 which is what we call our support groups, which we have all over the place. 125 00:08:45,640 --> 00:08:47,900 We're really focused on moms. 126 00:08:47,900 --> 00:08:48,960 We are mom centric. 127 00:08:48,960 --> 00:08:53,440 We are really giving moms permission to take care of their mental health. 128 00:08:53,440 --> 00:08:54,580 We are imploring them. 129 00:08:54,580 --> 00:08:59,280 We're empowering them, educating them, and sometimes even begging them to put themselves 130 00:08:59,280 --> 00:09:02,960 first, because moms tend to put themselves last. 131 00:09:02,960 --> 00:09:04,920 Oh, always. 132 00:09:04,920 --> 00:09:07,040 I can attest to that too. 133 00:09:07,040 --> 00:09:14,160 So from this community that you have created and fostered comes this book, right, that 134 00:09:14,160 --> 00:09:16,860 you've titled Becoming Brave Together. 135 00:09:16,860 --> 00:09:20,720 So who's inspiring you to create this? 136 00:09:20,720 --> 00:09:25,920 Well, I definitely have always dreamed of doing my own book. 137 00:09:25,920 --> 00:09:33,800 And then the idea of collectively sharing stories really, really excited me. 138 00:09:33,800 --> 00:09:41,640 And because all writers think that they are terrible writers, and so to give the opportunity 139 00:09:41,640 --> 00:09:47,880 to validate these moms who are writers, more importantly, to give them a voice and a platform 140 00:09:47,880 --> 00:09:52,320 to share their story, because not everyone's going to start a podcast. 141 00:09:52,320 --> 00:09:55,400 Not everyone's going to start a nonprofit organization. 142 00:09:55,400 --> 00:09:57,520 How do they get their voice out there? 143 00:09:57,520 --> 00:10:02,400 And how can I validate their voice and their experience? 144 00:10:02,400 --> 00:10:04,800 Well, let's put it in a book. 145 00:10:04,800 --> 00:10:12,640 Also, I know that our friends and family might only be hearing our story. 146 00:10:12,640 --> 00:10:18,880 And I think just our human nature dealing with pain and hardship, we can easily minimize 147 00:10:18,880 --> 00:10:24,120 what a friend might be going through, because we only know that one story. 148 00:10:24,120 --> 00:10:30,760 But here we're presenting a book with 22 stories, my introduction included, that really can 149 00:10:30,760 --> 00:10:36,800 open the eyes of our friends and family and really understand or try to understand on 150 00:10:36,800 --> 00:10:39,400 a deeper level what we're going through. 151 00:10:39,400 --> 00:10:42,520 And hopefully it moves them to action. 152 00:10:42,520 --> 00:10:44,040 Let me bring you groceries. 153 00:10:44,040 --> 00:10:45,680 Let me be your pharmacy runner. 154 00:10:45,680 --> 00:10:47,720 I'll do your laundry. 155 00:10:47,720 --> 00:10:54,400 The help that we need as caregivers, as you know, it's not just about babysitting or having 156 00:10:54,400 --> 00:10:55,400 respite care professionals. 157 00:10:55,400 --> 00:10:58,640 Yes, we would love friends and family to say, train me. 158 00:10:58,640 --> 00:10:59,640 That would be great. 159 00:10:59,640 --> 00:11:05,680 There are so many other things that our friends and family can do to take things off our to-do 160 00:11:05,680 --> 00:11:07,880 list, which is relentless. 161 00:11:07,880 --> 00:11:11,200 Yeah, never ceasing, right? 162 00:11:11,200 --> 00:11:17,240 I know I don't want you to give too many spoilers away, but what types of stories can people 163 00:11:17,240 --> 00:11:20,200 expect to get from the anthology? 164 00:11:20,200 --> 00:11:27,640 Well, you're going to just hear such a variety of what goes on in the life of these moms. 165 00:11:27,640 --> 00:11:35,040 So we've got different ages of kids represented and different diagnoses represented. 166 00:11:35,040 --> 00:11:39,600 So you're going to learn about maybe some rare diseases you haven't heard of. 167 00:11:39,600 --> 00:11:44,320 You're going to think about an aspect of caregiving that is not a part of your life if you're 168 00:11:44,320 --> 00:11:49,320 a caregiver reading it and think, oh, wow, and be inspired. 169 00:11:49,320 --> 00:11:54,840 I think when we share our stories, we're so strengthened by seeing and witnessing each 170 00:11:54,840 --> 00:11:58,760 other's strength and resilience and love. 171 00:11:58,760 --> 00:12:05,920 There are so many stories in this book which begs the question, not only how did you choose 172 00:12:05,920 --> 00:12:11,680 which stories go in and do you think there's another one in our future? 173 00:12:11,680 --> 00:12:15,520 Well, I absolutely would like to do more for sure. 174 00:12:15,520 --> 00:12:24,560 I have lots of ideas and I want to give voice to more and more moms and I want to shout 175 00:12:24,560 --> 00:12:27,600 the worth of caregivers and caregiving. 176 00:12:27,600 --> 00:12:32,900 So I think more books are definitely in order and are on the dream list. 177 00:12:32,900 --> 00:12:41,920 So how we came about it, we certainly put a call out there on social media. 178 00:12:41,920 --> 00:12:43,840 We sent emails to our community. 179 00:12:43,840 --> 00:12:52,880 We just told everybody that we knew, honestly, like our team, and gave a deadline and said 180 00:12:52,880 --> 00:12:58,600 do a submission and it's hard because you want to include everybody. 181 00:12:58,600 --> 00:13:04,000 You want to include everybody and you think that everyone really deserves an opportunity, 182 00:13:04,000 --> 00:13:14,160 but not everyone is a writer necessarily where we felt like it was either the right story 183 00:13:14,160 --> 00:13:18,440 or the right angle or the right wording. 184 00:13:18,440 --> 00:13:19,640 It was a whole team effort. 185 00:13:19,640 --> 00:13:23,720 It was definitely not my deciding. 186 00:13:23,720 --> 00:13:28,600 It's hard because you don't want to reject anyone's story because you know how important 187 00:13:28,600 --> 00:13:29,600 it is. 188 00:13:29,600 --> 00:13:30,600 It is their whole heart. 189 00:13:30,600 --> 00:13:34,280 It is their whole soul. 190 00:13:34,280 --> 00:13:38,960 But we had to narrow it down to... 191 00:13:38,960 --> 00:13:44,520 I can attest that it is a very diverse selection of stories. 192 00:13:44,520 --> 00:13:50,560 I feel that any parent who is anywhere in their disability journey who picks up this 193 00:13:50,560 --> 00:13:57,400 book, someone in this book that you've created is going to speak to them. 194 00:13:57,400 --> 00:14:03,800 In addition to empowering caregivers and hopefully giving examples to family members of what 195 00:14:03,800 --> 00:14:06,560 they can do to support and how... 196 00:14:06,560 --> 00:14:11,520 What else are you hoping people take away from this book or how they feel after finishing 197 00:14:11,520 --> 00:14:12,520 it? 198 00:14:12,520 --> 00:14:20,920 Honestly, I hope it moves some people into advocacy because our organization is all about 199 00:14:20,920 --> 00:14:25,240 the mental health of caregivers and we are trying to teach and encourage moms to take 200 00:14:25,240 --> 00:14:29,920 steps so that they don't face burnout or if they're having to treat burnout. 201 00:14:29,920 --> 00:14:39,240 However, burnout is not the fault of a caregiving mom who's not engaging in true self-care practices. 202 00:14:39,240 --> 00:14:44,640 It's really a... we have so many systems that are broken in this country. 203 00:14:44,640 --> 00:14:51,680 Not every state pays you to be a caregiver when your caregiving disrupts your career 204 00:14:51,680 --> 00:14:54,360 or ability to work. 205 00:14:54,360 --> 00:14:58,840 We don't have enough respite caregivers across the country. 206 00:14:58,840 --> 00:15:00,040 We're in a massive shortage. 207 00:15:00,040 --> 00:15:01,120 And why? 208 00:15:01,120 --> 00:15:04,840 Because they are not paid enough through the state, through the government. 209 00:15:04,840 --> 00:15:08,640 They could get a better wage working at McDonald's. 210 00:15:08,640 --> 00:15:10,220 So why not go there? 211 00:15:10,220 --> 00:15:13,920 They could get benefits going somewhere else. 212 00:15:13,920 --> 00:15:20,560 And so unless we can lobby and make changes, we're in trouble. 213 00:15:20,560 --> 00:15:29,180 And the rising statistics of kids growing up to become adults in this world, it's rising 214 00:15:29,180 --> 00:15:30,180 and rising. 215 00:15:30,180 --> 00:15:32,200 We have more and more caregivers. 216 00:15:32,200 --> 00:15:38,560 And so I really hope that not only there are people who say, I'll do your laundry, but 217 00:15:38,560 --> 00:15:43,320 there are people who say, all right, let's do a march. 218 00:15:43,320 --> 00:15:50,040 We really have to make some big changes in this country to support caregivers. 219 00:15:50,040 --> 00:15:52,420 And everything starts from a parent, right? 220 00:15:52,420 --> 00:15:56,800 Any big changes that have been made, even if we're talking about Katie Beckett, that 221 00:15:56,800 --> 00:15:58,360 was from her mom. 222 00:15:58,360 --> 00:16:02,000 So all change, I always say, is it comes from parents. 223 00:16:02,000 --> 00:16:06,440 And the fact that you've written this book that leads to that, that speaks to that, really 224 00:16:06,440 --> 00:16:10,060 just encourages and empowers. 225 00:16:10,060 --> 00:16:15,320 So now that everyone listening is jazzed and wants to read this book, where do we find 226 00:16:15,320 --> 00:16:16,320 it? 227 00:16:16,320 --> 00:16:17,320 Thank you. 228 00:16:17,320 --> 00:16:19,360 You can find it easily on Amazon. 229 00:16:19,360 --> 00:16:21,320 Just look up Becoming Brave Together. 230 00:16:21,320 --> 00:16:22,720 It will pop up. 231 00:16:22,720 --> 00:16:26,400 We have a paperback and we have a digital version. 232 00:16:26,400 --> 00:16:31,880 We would love for you to purchase the book and leave us a review and a rating. 233 00:16:31,880 --> 00:16:34,560 That would be amazing and generous of you. 234 00:16:34,560 --> 00:16:35,560 Yeah. 235 00:16:35,560 --> 00:16:36,560 Thank you. 236 00:16:36,560 --> 00:16:38,560 You can count me in on that for sure. 237 00:16:38,560 --> 00:16:42,400 I wanted to circle back to the community that you've created. 238 00:16:42,400 --> 00:16:49,360 And I know that you had mentioned that it is not just in California, it is spread out 239 00:16:49,360 --> 00:16:50,640 almost everywhere. 240 00:16:50,640 --> 00:16:54,040 I want to ask, we're in Idaho. 241 00:16:54,040 --> 00:17:01,080 How do you suggest if anyone listening to this wanted to bring this community to their 242 00:17:01,080 --> 00:17:03,600 community, what is the best way for them to do that? 243 00:17:03,600 --> 00:17:10,000 Well, they can certainly just reach out to me at hello at wearebravetogether.org and 244 00:17:10,000 --> 00:17:14,400 say, how do I bring a connection circle to Idaho? 245 00:17:14,400 --> 00:17:15,800 And we can send them information. 246 00:17:15,800 --> 00:17:16,900 We have an info sheet. 247 00:17:16,900 --> 00:17:18,600 We have an application process. 248 00:17:18,600 --> 00:17:20,080 We have an agreement. 249 00:17:20,080 --> 00:17:21,600 We explain what's involved. 250 00:17:21,600 --> 00:17:25,320 It's a volunteer commitment to be a connection circle leader. 251 00:17:25,320 --> 00:17:26,720 We train you. 252 00:17:26,720 --> 00:17:28,300 We give you a training guide. 253 00:17:28,300 --> 00:17:33,680 We give you a mentor that will reach out to you on a monthly basis to support you. 254 00:17:33,680 --> 00:17:40,080 And so we have a very intentional plan for our connection circles. 255 00:17:40,080 --> 00:17:44,320 And we would love to start a bunch in Idaho. 256 00:17:44,320 --> 00:17:45,320 Yeah. 257 00:17:45,320 --> 00:17:50,600 I think that Idaho is very much an opportunity for this to come in. 258 00:17:50,600 --> 00:17:54,720 And I'm glad that our listeners are hearing you and hearing your voice and hearing your 259 00:17:54,720 --> 00:17:59,880 passion so that they know that this isn't just I submit an application and then bam, 260 00:17:59,880 --> 00:18:02,000 I've started it and I get a t-shirt. 261 00:18:02,000 --> 00:18:03,280 There's a lot more. 262 00:18:03,280 --> 00:18:07,040 There's a lot more that goes into it, a lot of training and a lot of support. 263 00:18:07,040 --> 00:18:11,400 And I think that that is going to make people feel a lot more comfortable. 264 00:18:11,400 --> 00:18:13,720 So I appreciate you saying that. 265 00:18:13,720 --> 00:18:18,760 I'd also like to hear a little bit more about your podcast. 266 00:18:18,760 --> 00:18:20,840 It's got a great listener base. 267 00:18:20,840 --> 00:18:24,480 You've got tons of reviews and downloads. 268 00:18:24,480 --> 00:18:26,280 I'm so proud of you. 269 00:18:26,280 --> 00:18:27,280 It's a lot. 270 00:18:27,280 --> 00:18:28,680 I know what it takes to start one. 271 00:18:28,680 --> 00:18:32,740 So that's a huge, phenomenal accomplishment. 272 00:18:32,740 --> 00:18:36,760 What are some of your main topics and when are new episodes released? 273 00:18:36,760 --> 00:18:42,480 So new episodes are released every single Wednesday and we have three types of episodes. 274 00:18:42,480 --> 00:18:43,820 We have story episodes. 275 00:18:43,820 --> 00:18:51,280 So a mom, sometimes a dad, sometimes a sibling will submit a story 500 to 700 words and then 276 00:18:51,280 --> 00:18:55,920 our team will review it and approve it and then produce this beautiful story episode 277 00:18:55,920 --> 00:18:58,480 and we'll obviously interview the writer. 278 00:18:58,480 --> 00:19:04,600 We also have ask us anything episodes with Dr. Zoe Shaw and Susanna Pace-Lavelle, who's 279 00:19:04,600 --> 00:19:07,520 a master coach. 280 00:19:07,520 --> 00:19:10,320 These are available to anybody to call in. 281 00:19:10,320 --> 00:19:11,920 You can call in and leave a message. 282 00:19:11,920 --> 00:19:16,180 You can leave it anonymously if you want and you can ask us a question. 283 00:19:16,180 --> 00:19:22,840 So for example, we received a call saying, my child is being bullied at school. 284 00:19:22,840 --> 00:19:24,760 What am I supposed to do about this? 285 00:19:24,760 --> 00:19:30,560 And so Susanna, Zoe and I will then dive into the topic and respond to the question. 286 00:19:30,560 --> 00:19:34,540 And then we have a third type of episode, which we call our practical episodes and we 287 00:19:34,540 --> 00:19:41,160 usually interview an advocate, a therapist, an expert, a coach on a particular topic that's 288 00:19:41,160 --> 00:19:42,760 been requested. 289 00:19:42,760 --> 00:19:43,760 Wow. 290 00:19:43,760 --> 00:19:49,320 So now, I mean, you're getting parents' perspectives, you're getting doctors' perspectives, you 291 00:19:49,320 --> 00:19:51,560 can leave an anonymous question. 292 00:19:51,560 --> 00:19:55,840 That's really breaking down barriers for really anybody to see. 293 00:19:55,840 --> 00:19:59,000 I mean, phenomenal. 294 00:19:59,000 --> 00:20:04,680 I have one more question because we here at iPoll, we are Idaho's parent training and 295 00:20:04,680 --> 00:20:09,340 information center, as well as the family to family health and information center. 296 00:20:09,340 --> 00:20:14,760 And I was just curious not to put you on the spot, but at any point in your journey as 297 00:20:14,760 --> 00:20:22,240 a parent, did you lean on your area's parent training and information center for support? 298 00:20:22,240 --> 00:20:26,160 So we in the state of California, we have something called regional centers. 299 00:20:26,160 --> 00:20:28,920 There's 21 regional centers in the state of California. 300 00:20:28,920 --> 00:20:33,280 And I've definitely been to training through the regional center, through the state. 301 00:20:33,280 --> 00:20:38,920 I think most of my training that I've received has been through the Prader Willie, California 302 00:20:38,920 --> 00:20:40,840 Foundation. 303 00:20:40,840 --> 00:20:43,800 They have conferences, they have trainings. 304 00:20:43,800 --> 00:20:51,640 And so I've mainly because I needed some Prader Willie syndrome specific behavior training. 305 00:20:51,640 --> 00:20:59,080 And they have such a great arm of advocacy, you know, helping with IEPs and even when 306 00:20:59,080 --> 00:21:02,960 we had issues getting growth hormone, that kind of thing. 307 00:21:02,960 --> 00:21:09,440 But we definitely our regional centers definitely have a lot, a lot of seminars and webinars 308 00:21:09,440 --> 00:21:12,480 and stuff that they that they put on that I have attended. 309 00:21:12,480 --> 00:21:14,920 That is so great to hear. 310 00:21:14,920 --> 00:21:20,800 I love when people say, you know, I found my I found my center, they were able to support. 311 00:21:20,800 --> 00:21:25,440 And even just that you were able for your son's disability specific that there was a 312 00:21:25,440 --> 00:21:29,180 network for you to reach out to that is so crucial. 313 00:21:29,180 --> 00:21:34,740 And Idaho being, you know, in some parts, not even just rural, but frontier, there's 314 00:21:34,740 --> 00:21:38,540 a lack sometimes of resources in some of our areas. 315 00:21:38,540 --> 00:21:44,400 So just that you can show that they exist and that you've accessed them really helps 316 00:21:44,400 --> 00:21:46,000 us as well. 317 00:21:46,000 --> 00:21:50,640 I guess I just want to ask, you know, we've really talked a lot about the book and the 318 00:21:50,640 --> 00:21:54,000 podcast and your community that you've created. 319 00:21:54,000 --> 00:21:59,320 Is there any parting thoughts or anything you'd like parents to know? 320 00:21:59,320 --> 00:22:06,560 Well, I want all parents to know that to have a sense of belonging is your birthright. 321 00:22:06,560 --> 00:22:12,520 And so to be in community with other people who understand your circumstances to be in 322 00:22:12,520 --> 00:22:16,240 a non judgmental community is your right. 323 00:22:16,240 --> 00:22:17,600 And you deserve that. 324 00:22:17,600 --> 00:22:22,800 And I know you're tired, exhausted, and maybe even a little bit afraid to attend some sort 325 00:22:22,800 --> 00:22:28,360 of supportive community or support group, but it truly is energizing to be with other 326 00:22:28,360 --> 00:22:30,200 people who get it. 327 00:22:30,200 --> 00:22:36,740 And I know that as the primary caregiver, you're busy, busy, busy. 328 00:22:36,740 --> 00:22:44,040 And the like you said, the unseizing to do list exists and you deserve to take care of 329 00:22:44,040 --> 00:22:45,840 your mental health. 330 00:22:45,840 --> 00:22:47,760 You're the most important person in the family. 331 00:22:47,760 --> 00:22:53,720 And if you go down, the whole ship goes down, so please, please take care of you. 332 00:22:53,720 --> 00:22:55,280 Isn't that the truth? 333 00:22:55,280 --> 00:23:00,840 Well, Jessica, I just want to say a huge thank you for taking time out listeners. 334 00:23:00,840 --> 00:23:03,900 You don't know, but it's a very early where she is. 335 00:23:03,900 --> 00:23:08,400 So she has taken time out of her morning to spend some time with us today. 336 00:23:08,400 --> 00:23:09,880 Please go out and buy her book. 337 00:23:09,880 --> 00:23:11,280 You can find it on Amazon. 338 00:23:11,280 --> 00:23:14,360 You can reach out to me and I'll tell you where to find it. 339 00:23:14,360 --> 00:23:20,160 And then we hope to see more and hopefully you get lots of requests to bring your community 340 00:23:20,160 --> 00:23:21,520 to our community. 341 00:23:21,520 --> 00:23:23,760 So thank you so much for your time. 342 00:23:23,760 --> 00:23:25,640 Oh, thank you. 343 00:23:25,640 --> 00:23:26,640 Thank you. 344 00:23:26,640 --> 00:23:30,440 I appreciate having this time together and getting an opportunity to share about the 345 00:23:30,440 --> 00:23:34,280 book and we are brave and brave together the podcast. 346 00:23:34,280 --> 00:23:35,280 So thanks. 347 00:23:35,280 --> 00:23:36,280 Absolutely. 348 00:23:36,280 --> 00:23:43,480 Thank you. 349 00:23:43,480 --> 00:23:48,560 Thank you so much, everyone out there in podcast land for listening in. 350 00:23:48,560 --> 00:23:56,400 As always, if you are in Idaho or moving to Idaho and have any questions on systems and 351 00:23:56,400 --> 00:24:01,800 services for children with disabilities, please consider reaching out to us on our website 352 00:24:01,800 --> 00:24:14,000 at I pull Idaho dot org that's I P U L Idaho dot org or by calling us at two zero eight 353 00:24:14,000 --> 00:24:15,000 three four two five eight eight four. 354 00:24:15,000 --> 00:24:16,000 Be sure to tune in next time. 355 00:24:16,000 --> 00:24:19,000 Until then, this has been unlimited parenting. 356 00:24:19,000 --> 00:24:20,000 Thanks for listening. 357 00:24:20,000 --> 00:24:34,880 Polish.