1 00:00:00,000 --> 00:00:13,000 Welcome to Unlimited Parenting, where we discuss having children with disabilities or special 2 00:00:13,000 --> 00:00:14,080 health care needs. 3 00:00:14,080 --> 00:00:17,840 I'm Allison, and this is not your normal episode. 4 00:00:17,840 --> 00:00:23,520 Today I am so excited to be joined by author Kelly Coleman, and we are going to be discussing 5 00:00:23,520 --> 00:00:33,960 her new book, Everything No One Tells You About Parenting a Disabled Child. 6 00:00:33,960 --> 00:00:41,440 If you've ever longed to feel seen as a parent of a child with a disability, this is your 7 00:00:41,440 --> 00:00:43,160 book. 8 00:00:43,160 --> 00:00:52,520 If you've ever wanted an all-encompassing resource with tips from school to community-based 9 00:00:52,520 --> 00:00:58,880 resources, healthcare, financial planning, this book is for you. 10 00:00:58,880 --> 00:01:04,400 So without further ado, let's get into the stuff and the things. 11 00:01:04,400 --> 00:01:06,360 That really makes me feel special. 12 00:01:06,360 --> 00:01:14,440 Yeah, but here's the thing, not even like, oh, that's special, but like, it is actually 13 00:01:14,440 --> 00:01:16,000 useful. 14 00:01:16,000 --> 00:01:20,600 And there's so much out there that makes me feel like, okay, I feel better. 15 00:01:20,600 --> 00:01:22,880 I'm in community with people. 16 00:01:22,880 --> 00:01:26,900 And that mental health piece is so hugely important. 17 00:01:26,900 --> 00:01:33,240 And there are so many resources and podcasts out there with these parents who are having 18 00:01:33,240 --> 00:01:36,480 these great and important conversations. 19 00:01:36,480 --> 00:01:44,480 And so often I find the piece that is missing, which is what I address in the book, but also 20 00:01:44,480 --> 00:01:49,600 what you're addressing every time on the podcast is, but how do I actually do that? 21 00:01:49,600 --> 00:01:52,360 How do I actually do things? 22 00:01:52,360 --> 00:01:59,120 And I found for myself for so many years, I was like in my bottomless pit all by myself 23 00:01:59,120 --> 00:02:01,640 and didn't know what I was doing. 24 00:02:01,640 --> 00:02:05,160 And then I connected with other parents and that piece came into place. 25 00:02:05,160 --> 00:02:10,480 And then I realized, wait, but I'm reinventing the wheel and figuring everything out from 26 00:02:10,480 --> 00:02:12,640 scratch on my own. 27 00:02:12,640 --> 00:02:19,040 And it wasn't until last, and my son who's disabled is 10, it literally wasn't until 28 00:02:19,040 --> 00:02:26,280 last year that someone, Judy Heumann actually told me that there is a parent training and 29 00:02:26,280 --> 00:02:27,800 information center in every state. 30 00:02:27,800 --> 00:02:29,600 And I was like, wait, wait, hold up. 31 00:02:29,600 --> 00:02:32,360 My kid is 10 years old. 32 00:02:32,360 --> 00:02:34,200 Where were you 10 years ago? 33 00:02:34,200 --> 00:02:38,840 And I'm writing a book and you're the first person to tell me that? 34 00:02:38,840 --> 00:02:42,480 It's like, how is that not the first thing out of someone's mouth? 35 00:02:42,480 --> 00:02:47,640 Your kid is disabled and there's this resource in every state. 36 00:02:47,640 --> 00:02:53,440 I just want you to know that I so appreciate hearing you say that because it's very much 37 00:02:53,440 --> 00:02:59,720 a struggle that not just the parent center in Idaho, Idaho Parents Unlimited, but every 38 00:02:59,720 --> 00:03:06,520 parent center across the nation is really struggling with how am I, what am I not doing 39 00:03:06,520 --> 00:03:10,520 to reach these parents earlier, to reach these kids earlier? 40 00:03:10,520 --> 00:03:15,680 We even on our website we've created, Now What Guides, now you have a diagnosis, what 41 00:03:15,680 --> 00:03:19,600 do you do now, which is essentially your book, right? 42 00:03:19,600 --> 00:03:23,080 So I'm just, we are also very much at a loss. 43 00:03:23,080 --> 00:03:25,280 Like, how are we not getting these people? 44 00:03:25,280 --> 00:03:26,280 Yeah. 45 00:03:26,280 --> 00:03:33,840 Well, and I'm working hard with my book to connect to, of course, the parents, but also 46 00:03:33,840 --> 00:03:39,960 anyone who is either delivering a diagnosis or delivering news that we need to start an 47 00:03:39,960 --> 00:03:48,240 evaluation or considerations because as you know, things are delivered so sloppily and 48 00:03:48,240 --> 00:03:54,240 it's such, it's like starting parents out with, I'm sorry, this is the worst news ever 49 00:03:54,240 --> 00:03:59,160 before most of us have even had a chance to fall in love with the person our child actually 50 00:03:59,160 --> 00:04:00,160 is. 51 00:04:00,160 --> 00:04:06,080 And like my kids, I have two kids, they're both awesome. 52 00:04:06,080 --> 00:04:14,600 But it's like, I'm being told what a tragedy this is with no context, no knowledge of disability. 53 00:04:14,600 --> 00:04:17,480 And I'm like, okay, I'm coming at this from ignorance. 54 00:04:17,480 --> 00:04:20,040 And you're telling me this is tragic and good luck. 55 00:04:20,040 --> 00:04:23,480 And I'm like, what are we doing? 56 00:04:23,480 --> 00:04:28,800 Yeah, what, whatever happened to having high expectations when you don't know what to expect, 57 00:04:28,800 --> 00:04:29,800 right? 58 00:04:29,800 --> 00:04:30,800 Yeah. 59 00:04:30,800 --> 00:04:31,800 Yeah. 60 00:04:31,800 --> 00:04:40,320 And that is just like, we're told basically to have no expectations, not just for our 61 00:04:40,320 --> 00:04:49,640 child, but also for ourselves and our future because like for me and for my husband, like, 62 00:04:49,640 --> 00:04:56,400 we realized and knew very early on that it looks like we are going to be parent caregivers 63 00:04:56,400 --> 00:04:58,120 for the rest of our lives. 64 00:04:58,120 --> 00:05:01,920 It will be a full time job for forever. 65 00:05:01,920 --> 00:05:09,520 Our son who again is amazing, is not ever going to be able to live independently. 66 00:05:09,520 --> 00:05:13,880 One of them will hopefully he'll be rich and support us all, but we'll work on that. 67 00:05:13,880 --> 00:05:17,680 I'm like, no pressure, dude, but I'd like to retire at some point. 68 00:05:17,680 --> 00:05:19,160 No pressure, but step up. 69 00:05:19,160 --> 00:05:20,920 Yeah, come on, you're 12. 70 00:05:20,920 --> 00:05:24,000 We need to we need some real life skills here. 71 00:05:24,000 --> 00:05:26,040 Practicing the Tuva is not going to get us there. 72 00:05:26,040 --> 00:05:27,040 Exactly. 73 00:05:27,040 --> 00:05:31,960 It's awesome because Tuva sound like farts. 74 00:05:31,960 --> 00:05:38,320 But yeah, so it's like we're being launched into this forever full time role for the rest 75 00:05:38,320 --> 00:05:42,960 of our lives that we also need to plan for for when we die, because that will definitely 76 00:05:42,960 --> 00:05:45,200 happen at some point. 77 00:05:45,200 --> 00:05:51,480 And there's no like, oh, and here's the net we're going to catch and teach you how to 78 00:05:51,480 --> 00:05:53,280 do all these things. 79 00:05:53,280 --> 00:05:58,880 It's like, OK, spend a decade and then you'll kind of get a foundation and then good luck. 80 00:05:58,880 --> 00:06:02,320 Yeah, what are we doing to parent caregivers? 81 00:06:02,320 --> 00:06:05,760 We're like, we're making this so much harder than it needs to be. 82 00:06:05,760 --> 00:06:11,360 And again, back to your podcast in your organization and to parent training and information centers 83 00:06:11,360 --> 00:06:14,640 in every state. 84 00:06:14,640 --> 00:06:21,680 If every practitioner knew to just send parents towards these centers, we would all be better 85 00:06:21,680 --> 00:06:27,720 off including that clinician delivering a diagnosis, because I've talked to so many 86 00:06:27,720 --> 00:06:35,440 medical professionals and educators and evaluators who deliver these diagnoses and it sucks. 87 00:06:35,440 --> 00:06:41,000 Yeah, they're being told the same messages that we're being told, or there's no education 88 00:06:41,000 --> 00:06:43,300 of how to deliver these things. 89 00:06:43,300 --> 00:06:48,040 And so you're just assuming this is the tragedy that is befalling the family and you're giving 90 00:06:48,040 --> 00:06:49,960 them news of tragedy. 91 00:06:49,960 --> 00:06:52,440 And there can be tragedy. 92 00:06:52,440 --> 00:06:55,400 There are certainly medical things that are real tragic. 93 00:06:55,400 --> 00:07:00,080 Like if I could get rid of my son's epilepsy, boy, I sure would. 94 00:07:00,080 --> 00:07:01,680 But he's not tragic. 95 00:07:01,680 --> 00:07:08,720 He's awesome and he loves airplanes and swimming and he has great hair and he's loving life. 96 00:07:08,720 --> 00:07:14,680 I also think that there's also the flip side to that conversation of where the practitioner 97 00:07:14,680 --> 00:07:20,560 delivers a diagnosis and it's just another day for them or it's the fifth one they've 98 00:07:20,560 --> 00:07:25,120 given that day and they make it seem so banal and benign. 99 00:07:25,120 --> 00:07:31,360 And then all of a sudden you're sitting there and you're like, I don't what just happened. 100 00:07:31,360 --> 00:07:32,840 Yeah. 101 00:07:32,840 --> 00:07:36,560 My life is so different now, my family dynamic. 102 00:07:36,560 --> 00:07:40,800 And then I also always, when I always try to echo to parents, your life is still the 103 00:07:40,800 --> 00:07:45,160 same as it was five minutes before you got that diagnosis, right? 104 00:07:45,160 --> 00:07:47,040 But there's always that grieving process. 105 00:07:47,040 --> 00:07:48,600 Did you go through that too? 106 00:07:48,600 --> 00:07:50,840 Oh my gosh. 107 00:07:50,840 --> 00:07:58,720 So what's interesting is it's like your life is both exactly the same and 100% different. 108 00:07:58,720 --> 00:08:04,360 And the gap in between that for me was the grieving process because I was like, okay, 109 00:08:04,360 --> 00:08:05,360 it's totally the same. 110 00:08:05,360 --> 00:08:07,480 No, it's not totally the same. 111 00:08:07,480 --> 00:08:13,560 My kid still eats, but now he has a feeding tube, like all of these things. 112 00:08:13,560 --> 00:08:21,440 And I again was coming at disability from what I now realize was ignorance and my own 113 00:08:21,440 --> 00:08:25,240 ableism because I had grown up being taught, don't stare, don't look, pretend like that 114 00:08:25,240 --> 00:08:28,720 disabled person isn't there, which is terrible. 115 00:08:28,720 --> 00:08:29,720 Right. 116 00:08:29,720 --> 00:08:30,720 Right. 117 00:08:30,720 --> 00:08:34,840 Anyone, especially not my own kids to walk through life with people being like, oh, I 118 00:08:34,840 --> 00:08:35,840 don't see you. 119 00:08:35,840 --> 00:08:36,840 Just kidding. 120 00:08:36,840 --> 00:08:37,840 No. 121 00:08:37,840 --> 00:08:47,840 And the grieving process for me only recently in the last year or two, did someone put a 122 00:08:47,840 --> 00:08:54,160 word to exactly how I was feeling that like threw me to the bottom of that bottomless 123 00:08:54,160 --> 00:08:55,160 pit. 124 00:08:55,160 --> 00:08:58,360 Because there is a bottom. 125 00:08:58,360 --> 00:09:00,440 And the word was inadequate. 126 00:09:00,440 --> 00:09:03,240 And I'm like, that's it. 127 00:09:03,240 --> 00:09:06,280 And that for me, I realized. 128 00:09:06,280 --> 00:09:10,200 And I'm like ready to cry even just thinking about like the moment when I was like, that 129 00:09:10,200 --> 00:09:11,680 word is it. 130 00:09:11,680 --> 00:09:20,200 Because for me, every moment, no matter what I was doing, all of a sudden I felt inadequate. 131 00:09:20,200 --> 00:09:25,240 I had when our younger son, my kids are 12 and 10 now. 132 00:09:25,240 --> 00:09:29,320 My older son was 19 months old when my younger son was born. 133 00:09:29,320 --> 00:09:34,520 The younger one is one with disabilities, including a yet undiagnosed genetic syndrome. 134 00:09:34,520 --> 00:09:40,040 And in that, and we've done literally every test science has available up through full 135 00:09:40,040 --> 00:09:41,040 genome sequencing. 136 00:09:41,040 --> 00:09:43,960 So he might be the only one in the world. 137 00:09:43,960 --> 00:09:50,560 But within that, he has so much overlap with so many other individuals with diagnoses, 138 00:09:50,560 --> 00:09:55,760 including epilepsy, autism, cerebral palsy, cortical vision impairment, feeding tube, 139 00:09:55,760 --> 00:09:58,880 sensory processing, fine motor, gross motor, feeding tube. 140 00:09:58,880 --> 00:10:00,360 Like he's like an overachiever. 141 00:10:00,360 --> 00:10:03,080 He's like, I'm just going to, I'm just going to just collect these. 142 00:10:03,080 --> 00:10:04,480 I'm just going to check all the boxes. 143 00:10:04,480 --> 00:10:06,800 He picked everything from the menu, right? 144 00:10:06,800 --> 00:10:07,800 Exactly. 145 00:10:07,800 --> 00:10:10,600 It's like a menu and he's like, I'll take one of those. 146 00:10:10,600 --> 00:10:11,600 I'll take one of those. 147 00:10:11,600 --> 00:10:12,600 Surprise autism. 148 00:10:12,600 --> 00:10:15,880 Oh, look, here's some epilepsy. 149 00:10:15,880 --> 00:10:20,960 And you know, we could, we could joke and have a sense of humor about it because he's, 150 00:10:20,960 --> 00:10:24,920 he's awesome and vibrant and engaged in the world around him. 151 00:10:24,920 --> 00:10:31,040 He is mobile, which is not always the ultimate goal for all humans, but it makes his life 152 00:10:31,040 --> 00:10:36,960 easier because he is so active and so on the go and like needs to burn off energy. 153 00:10:36,960 --> 00:10:42,240 But you know, he, he walks like he's had a couple of drinks. 154 00:10:42,240 --> 00:10:44,260 And by the way, he has a sense of humor. 155 00:10:44,260 --> 00:10:51,220 So I have a sense of humor and everything that I talk about with my kids, we have discussed 156 00:10:51,220 --> 00:10:56,600 with them and gotten their consents and I'm not posting things and talking about things 157 00:10:56,600 --> 00:11:00,520 that we have not already discussed sharing as a family. 158 00:11:00,520 --> 00:11:05,920 So this inadequacy thing, it is so real with my first kid. 159 00:11:05,920 --> 00:11:11,960 I was like, my job is to feed him and change diapers and just love my baby. 160 00:11:11,960 --> 00:11:14,180 I'm like, I'm so good at that. 161 00:11:14,180 --> 00:11:16,560 I must be the best parent ever. 162 00:11:16,560 --> 00:11:20,400 And then my second kid comes around and I'm like, I know nothing and I am the worst parent 163 00:11:20,400 --> 00:11:28,240 ever because I'm like, I don't know anything about insurance and social services and evaluations 164 00:11:28,240 --> 00:11:33,560 and how to make these phone calls and being on hold for hours with customer service while 165 00:11:33,560 --> 00:11:40,120 I'm trying to like get one kid to eat and like the other kid to stop crying and like 166 00:11:40,120 --> 00:11:42,040 nothing. 167 00:11:42,040 --> 00:11:49,440 And so the feed your baby, change some diapers and just give them lots of love. 168 00:11:49,440 --> 00:11:53,200 Even that feels inadequate. 169 00:11:53,200 --> 00:12:02,200 And that feeling is awful because you're just like, I thought this is, I'm ready to cry. 170 00:12:02,200 --> 00:12:07,720 Like I thought this is what I was supposed to do is like just love my baby. 171 00:12:07,720 --> 00:12:12,720 And that part isn't what's hard about disability. 172 00:12:12,720 --> 00:12:14,760 The love part is like check. 173 00:12:14,760 --> 00:12:17,760 Like I got that box checked on my menu. 174 00:12:17,760 --> 00:12:22,800 But all the rest of this, even a decade in, some days I'm like, we got this all figured 175 00:12:22,800 --> 00:12:26,880 out and other days I'm like, where are my pants? 176 00:12:26,880 --> 00:12:30,600 Like what's going on here? 177 00:12:30,600 --> 00:12:39,040 And so that constant feeling of even now so far in some days I go to bed patting myself 178 00:12:39,040 --> 00:12:46,280 on the back and other days I go to bed saying like, did I do enough and did I do the things? 179 00:12:46,280 --> 00:12:53,520 And I hope that feeling goes away at some point, but I don't know that it does because 180 00:12:53,520 --> 00:12:59,760 there's not a destination that I will reach or that he will reach and he will launch into 181 00:12:59,760 --> 00:13:05,200 the world and go to college and have a job and support himself and choose to have a family 182 00:13:05,200 --> 00:13:10,840 or not and will be have full agency over all things in his life. 183 00:13:10,840 --> 00:13:17,520 Like that sounds like a destination and it is for one kid, but for the other kid, it's 184 00:13:17,520 --> 00:13:25,200 like how do I give him agency over his own life and decisions and self-determination and 185 00:13:25,200 --> 00:13:29,480 all of his things, but also steer the ship forever. 186 00:13:29,480 --> 00:13:33,440 It's really busy. 187 00:13:33,440 --> 00:13:38,880 And I don't, maybe this is too lofty of a question, but how do you reconcile those two 188 00:13:38,880 --> 00:13:44,160 different days where you go to bed feeling like I did all of the things I'm number one 189 00:13:44,160 --> 00:13:50,040 and then the other days where you go to bed feeling almost less than is there, I don't 190 00:13:50,040 --> 00:13:54,860 know, maybe a mantra that you say to yourself or how do you pick yourself back up and go 191 00:13:54,860 --> 00:13:56,800 to the next day? 192 00:13:56,800 --> 00:13:57,800 Coffee. 193 00:13:57,800 --> 00:14:10,640 In addition to that, I decided early on, and I have to remind myself of this all the time, 194 00:14:10,640 --> 00:14:19,120 that the decisions I make for him are the right decisions and that the things I am doing 195 00:14:19,120 --> 00:14:22,480 are the right things. 196 00:14:22,480 --> 00:14:31,120 We can always question everything and we might never know the answers, but if we are telling 197 00:14:31,120 --> 00:14:40,000 ourselves like I am just going to decide that like I am enough and I've got this, with everything, 198 00:14:40,000 --> 00:14:46,960 like there were good days and bad days and with kids who do have especially extreme support 199 00:14:46,960 --> 00:14:54,560 needs like my kid, like many of our friends and their children, the feelings and emotions 200 00:14:54,560 --> 00:15:02,800 are extreme and just recognizing that and knowing that even when I'm wondering if I 201 00:15:02,800 --> 00:15:10,160 did enough, just saying I did everything that I could in that moment and some days that 202 00:15:10,160 --> 00:15:15,960 is just functioning and getting through the day and I haven't slept and I haven't showered 203 00:15:15,960 --> 00:15:23,480 and we barely made it to school on time and all of these things that are a mess, is that 204 00:15:23,480 --> 00:15:25,160 my best for that day? 205 00:15:25,160 --> 00:15:31,040 And I feel like, yep, if just surviving is best and I forgot to walk the dog at night 206 00:15:31,040 --> 00:15:36,000 and I'm, nope, like I'm doing the things. 207 00:15:36,000 --> 00:15:43,080 And then I always, there's always lists of the, when I'm having a string of good days 208 00:15:43,080 --> 00:15:48,680 or when there's downtime of the paperwork and planning stuff that I can be chipping 209 00:15:48,680 --> 00:15:54,760 away at in those good moments and in those hard moments, which as we know moments can 210 00:15:54,760 --> 00:16:03,160 be months at a time, not beating myself up for not tackling the list because there will 211 00:16:03,160 --> 00:16:04,520 always be more to do. 212 00:16:04,520 --> 00:16:06,500 There will always be more lists. 213 00:16:06,500 --> 00:16:08,640 Even as I was writing the book, I was taking notes. 214 00:16:08,640 --> 00:16:09,840 I was like, oh, this is good. 215 00:16:09,840 --> 00:16:11,880 I should totally do this. 216 00:16:11,880 --> 00:16:17,440 And then I revamped, I deal with my insurance company and I'm like, oh, I just saved myself 217 00:16:17,440 --> 00:16:18,440 a lot of money. 218 00:16:18,440 --> 00:16:19,440 Great. 219 00:16:19,440 --> 00:16:29,680 So, I think we need to just give ourselves grace and like zero shame in some days I am 220 00:16:29,680 --> 00:16:33,880 just functioning and treading water is the thing to do. 221 00:16:33,880 --> 00:16:38,080 And then other days I'm going to do all the things. 222 00:16:38,080 --> 00:16:44,320 And that's just how we work because this needs to be sustainable. 223 00:16:44,320 --> 00:16:48,400 You know, it's kind of like when people are like, just don't eat sugar for the rest of 224 00:16:48,400 --> 00:16:49,400 your life. 225 00:16:49,400 --> 00:16:54,320 Eat this many grams of protein and eat this many almonds and you are going to be fit and 226 00:16:54,320 --> 00:16:56,240 healthy and it's going to be great. 227 00:16:56,240 --> 00:17:02,440 And I'm like, and that, that I could do that for like a half of a day, but I can't do that 228 00:17:02,440 --> 00:17:03,440 for forever. 229 00:17:03,440 --> 00:17:12,200 And I think looking at how this life can be sustainable for your child, but also for you 230 00:17:12,200 --> 00:17:20,920 as a human, I am not the disabled person, but his disability is giving structure to 231 00:17:20,920 --> 00:17:28,040 my life and is giving me this identity as a parent caregiver that I have had to learn 232 00:17:28,040 --> 00:17:30,280 from the ground up. 233 00:17:30,280 --> 00:17:36,200 And I need to be able to make that identity something that is sustainable so that I am 234 00:17:36,200 --> 00:17:45,280 not growing to resent him or his disability or others who are both having brunch when 235 00:17:45,280 --> 00:17:47,920 I'm on the phone with customer service. 236 00:17:47,920 --> 00:17:51,240 It has to be sustainable. 237 00:17:51,240 --> 00:17:56,680 So kind of that balance and knowing that being present is enough. 238 00:17:56,680 --> 00:17:59,800 Yes, absolutely. 239 00:17:59,800 --> 00:18:05,400 I'm curious if I can back up a little bit and ask if there was one thing that you could 240 00:18:05,400 --> 00:18:10,960 go back and tell yourself when your son was diagnosed or give yourself a preview of the 241 00:18:10,960 --> 00:18:14,200 future, what would you, what do you think you would have wanted to hear? 242 00:18:14,200 --> 00:18:19,240 Man, I'm totally going to cry again. 243 00:18:19,240 --> 00:18:23,760 So the original title of my book, it's now called Everything No One Tells You About Parenting 244 00:18:23,760 --> 00:18:27,960 a Disabled Child, which is a giant title and takes a long time to type, but it tells 245 00:18:27,960 --> 00:18:30,640 you what it is, it's all the stuff. 246 00:18:30,640 --> 00:18:36,120 The original title of the book was, oh, here I go, I'm going to cry, was You Will Feel 247 00:18:36,120 --> 00:18:43,400 Better because I feel like I wish I had a book or a sign or something that said that 248 00:18:43,400 --> 00:18:48,560 next to my bed that I would go to bed every morning seeing that and I would wake up every 249 00:18:48,560 --> 00:18:57,000 morning seeing that because everyone in the beginning was telling me how awful this is 250 00:18:57,000 --> 00:19:02,320 and I'm so sorry and this is so terrible and what are you going to do? 251 00:19:02,320 --> 00:19:05,080 I don't know how you're going to do this. 252 00:19:05,080 --> 00:19:13,720 And all the messages I was getting led me to believe I feel terrible all the time. 253 00:19:13,720 --> 00:19:15,320 I'm exhausted. 254 00:19:15,320 --> 00:19:20,520 I am just wrung out and I don't know what I'm doing. 255 00:19:20,520 --> 00:19:25,600 And because of all this messages, all this messaging I was getting, I felt like, and 256 00:19:25,600 --> 00:19:31,320 this is this feeling is forever and that made it so much worse. 257 00:19:31,320 --> 00:19:40,840 And if someone had said, I get how you are feeling in there and you will feel better. 258 00:19:40,840 --> 00:19:45,120 This feeling is not forever. 259 00:19:45,120 --> 00:19:56,240 And for me, what made me feel better is getting to know my kid. 260 00:19:56,240 --> 00:20:03,600 And when any kid is an infant, like they're decently similar and they're cute and they're 261 00:20:03,600 --> 00:20:07,160 infants, but you don't really know them as a person. 262 00:20:07,160 --> 00:20:11,800 You're just kind of projecting all of these things and that you hope they'll do this and 263 00:20:11,800 --> 00:20:19,160 do this and do this and you fall in love with that idea and then they grow into their own 264 00:20:19,160 --> 00:20:20,160 idea. 265 00:20:20,160 --> 00:20:25,680 But and for us, the diagnostic odyssey that we're still on started when our baby was an 266 00:20:25,680 --> 00:20:26,680 infant. 267 00:20:26,680 --> 00:20:31,680 So this was literally I was like, postpartum and hormonal and not fitting into any of my 268 00:20:31,680 --> 00:20:38,880 clothes in addition to dealing with new disability information. 269 00:20:38,880 --> 00:20:45,840 And not only did I not know him as a person yet, but all of these like, oh, maybe he'll 270 00:20:45,840 --> 00:20:46,840 do this. 271 00:20:46,840 --> 00:20:49,160 Maybe he'll do this. 272 00:20:49,160 --> 00:20:53,800 I was being told, oh, no, no, you don't get to hope any of that for him. 273 00:20:53,800 --> 00:20:59,240 You just get to hope that like, he survives and you're not in the hospital every day. 274 00:20:59,240 --> 00:21:00,240 Good luck. 275 00:21:00,240 --> 00:21:02,760 And it's just like, what? 276 00:21:02,760 --> 00:21:03,760 No. 277 00:21:03,760 --> 00:21:09,120 Like, of course, I felt like I would feel like that forever. 278 00:21:09,120 --> 00:21:15,240 And I wish somebody had told me that feeling wasn't forever because I think I could have 279 00:21:15,240 --> 00:21:23,400 I could have started the process of just loving everything. 280 00:21:23,400 --> 00:21:26,240 Oh, here I go. 281 00:21:26,240 --> 00:21:33,480 Loving everything about him from the beginning, just like we're supposed to do with all babies. 282 00:21:33,480 --> 00:21:39,800 Instead of feeling like the world was telling you, you were being robbed of something or 283 00:21:39,800 --> 00:21:44,480 broken or I'm so sorry, your life will never be this. 284 00:21:44,480 --> 00:21:45,480 Yes. 285 00:21:45,480 --> 00:21:53,240 Well, I love my child and I'm here for them and I support them and they are my life and 286 00:21:53,240 --> 00:21:54,240 this is my life. 287 00:21:54,240 --> 00:21:58,680 And just like everybody else on the planet, I make the best of it. 288 00:21:58,680 --> 00:22:00,520 Yes, absolutely. 289 00:22:00,520 --> 00:22:08,240 And for very many parents, even outside of the disability space, you might have a child 290 00:22:08,240 --> 00:22:13,720 who doesn't check the same demographic boxes that you check. 291 00:22:13,720 --> 00:22:20,560 And so all these ideas about the boxes that they check might be coming from a place of 292 00:22:20,560 --> 00:22:26,880 you're just making stuff up, which is a terrible idea, but that's what we all do. 293 00:22:26,880 --> 00:22:33,840 And when I started following actual disabled people online and their social media and these 294 00:22:33,840 --> 00:22:40,000 organizations, and at first I was even afraid to do that because of all of this like negative, 295 00:22:40,000 --> 00:22:43,520 horrible, wrong messaging of like, oh, disability is bad. 296 00:22:43,520 --> 00:22:44,880 This is bad stuff. 297 00:22:44,880 --> 00:22:48,480 I was like, I don't want to follow disabled adults because I don't want to be launched 298 00:22:48,480 --> 00:22:50,120 into this world of tragedy. 299 00:22:50,120 --> 00:22:54,400 Boy, that was wrong and ignorant and all the things. 300 00:22:54,400 --> 00:22:59,120 And when I started, you know, when you have, by the way, we all have real life disabled 301 00:22:59,120 --> 00:23:00,120 friends. 302 00:23:00,120 --> 00:23:02,960 We just might not know they're disabled. 303 00:23:02,960 --> 00:23:08,760 When you start talking about disability with disabled people, and the biggest part of that 304 00:23:08,760 --> 00:23:16,680 is listening and taking in what they have to say, it just lets the air out of the balloon 305 00:23:16,680 --> 00:23:20,440 to get real information from real humans. 306 00:23:20,440 --> 00:23:25,480 And I don't know why that took me or anybody else so long to figure out because that should 307 00:23:25,480 --> 00:23:27,760 be stop number one. 308 00:23:27,760 --> 00:23:33,640 And you know, when you're talking to somebody who is disabled and saying I was a two time 309 00:23:33,640 --> 00:23:37,560 White House appointee doesn't actually feel tragic. 310 00:23:37,560 --> 00:23:39,720 It feels like, oh, you're awesome. 311 00:23:39,720 --> 00:23:40,800 Okay, cool. 312 00:23:40,800 --> 00:23:44,800 And your disability is wildly different than my child's disability. 313 00:23:44,800 --> 00:23:51,720 The fact that you are saying that he is a part of this community and I can be an ally 314 00:23:51,720 --> 00:23:58,160 to the community and it's okay that you check different boxes. 315 00:23:58,160 --> 00:24:03,880 But you know, learn from people who are checking some of his boxes. 316 00:24:03,880 --> 00:24:09,400 What you're speaking to right now is actually a part of a conversation that we've had in 317 00:24:09,400 --> 00:24:11,000 our office recently. 318 00:24:11,000 --> 00:24:14,200 And I'm curious to get your take on it. 319 00:24:14,200 --> 00:24:21,920 What was it like as a non-disabled person writing a book about disability? 320 00:24:21,920 --> 00:24:28,200 Did you have any challenges kind of getting into the space besides those initial of kind 321 00:24:28,200 --> 00:24:33,000 of that what we're taught when we're younger of kind of just ignore it, you know, that's 322 00:24:33,000 --> 00:24:35,660 what disabled people would like us to do. 323 00:24:35,660 --> 00:24:37,960 What were some of the other challenges? 324 00:24:37,960 --> 00:24:42,400 I love that you asked this. 325 00:24:42,400 --> 00:24:53,480 For me, it was such a messy mess with my head thing of I have an identity within the disability 326 00:24:53,480 --> 00:24:56,120 world, but I'm not disabled. 327 00:24:56,120 --> 00:25:02,240 And how do I not talk over disabled people and take up if I'm taking up space where someone 328 00:25:02,240 --> 00:25:11,200 who's disabled should be taking up space, then like, that's really yucky and not okay. 329 00:25:11,200 --> 00:25:16,360 This book, first of all, just because you're disabled doesn't mean you're awesome at paperwork 330 00:25:16,360 --> 00:25:21,520 or that you like paperwork or you want to write a book about paperwork. 331 00:25:21,520 --> 00:25:27,400 I may not be disabled, but I'm weirdly good at paperwork, which is an awful like if I 332 00:25:27,400 --> 00:25:31,000 was a superhero, that would be the worst power ever. 333 00:25:31,000 --> 00:25:34,080 But there you go, I'm good at paperwork. 334 00:25:34,080 --> 00:25:41,480 So when I started writing the book, I was grappling with all of these things. 335 00:25:41,480 --> 00:25:46,760 And looking at disabled leaders like Emily Ladau, for example, who is interviewed here, 336 00:25:46,760 --> 00:25:52,040 and she amazingly, we hired her to do a sensitivity read of this. 337 00:25:52,040 --> 00:25:58,320 And really, she's been such an incredible resource. 338 00:25:58,320 --> 00:26:05,640 She is disabled herself and a writer and influencer and creator of lots of amazing things. 339 00:26:05,640 --> 00:26:10,240 I first started thinking about this as it's a disability book. 340 00:26:10,240 --> 00:26:14,480 And it's actually is a parent caregiving book. 341 00:26:14,480 --> 00:26:22,360 And I work really hard to get a diverse group of experts and parents that I source in the 342 00:26:22,360 --> 00:26:23,360 book. 343 00:26:23,360 --> 00:26:26,400 I've interviews with over 40 experts. 344 00:26:26,400 --> 00:26:32,000 I've got a dozen ish parents who are contributing writing letters. 345 00:26:32,000 --> 00:26:39,000 And I wanted it to reflect to how the general population where a quarter of the US population 346 00:26:39,000 --> 00:26:40,480 is disabled. 347 00:26:40,480 --> 00:26:45,420 And I said, I need first to be sure that in the book, at least a quarter of the experts 348 00:26:45,420 --> 00:26:48,840 and parents are disabled. 349 00:26:48,840 --> 00:26:57,680 And to say, I am writing a book within this space, but it is for parent caregivers of 350 00:26:57,680 --> 00:27:02,360 how to build their journey to do the things. 351 00:27:02,360 --> 00:27:10,440 And how can I build into this expertise from real life disabled people, not just about 352 00:27:10,440 --> 00:27:22,920 the paperwork, but also about inclusion and ableism and disability rights and what life 353 00:27:22,920 --> 00:27:30,320 looks like and feels like day to day from a perspective that I don't have. 354 00:27:30,320 --> 00:27:38,380 And I think it's really important to acknowledge that while I am not speaking for my child, 355 00:27:38,380 --> 00:27:46,600 I also am not required to erase my own existence as a parent caregiver. 356 00:27:46,600 --> 00:27:53,840 I just need to be mindful and it is messy and I'm sure I will get it wrong. 357 00:27:53,840 --> 00:27:59,280 But I'm hopeful that people will call me out when I get it wrong, especially about disability 358 00:27:59,280 --> 00:28:01,200 things. 359 00:28:01,200 --> 00:28:05,880 And I genuinely hope that I will learn and that I will be given the grace and opportunity 360 00:28:05,880 --> 00:28:11,600 to learn when I get it wrong because I think as parents we get it wrong all the time. 361 00:28:11,600 --> 00:28:12,600 Yeah. 362 00:28:12,600 --> 00:28:13,600 Daily, right? 363 00:28:13,600 --> 00:28:16,200 It's happening even without disability. 364 00:28:16,200 --> 00:28:22,040 I just want to say that when I was reading your book, which I did, by the way, beautiful, 365 00:28:22,040 --> 00:28:27,920 loved it, it very much, and I know we talk about the paperwork in the book, we talk about 366 00:28:27,920 --> 00:28:34,080 the experts, the parents writing letters to themselves, that there's so many templates 367 00:28:34,080 --> 00:28:38,200 in the book of ways to do things just to be more helpful. 368 00:28:38,200 --> 00:28:42,320 But it really reads like chicken soup for the soul. 369 00:28:42,320 --> 00:28:43,600 Do you remember those books? 370 00:28:43,600 --> 00:28:45,760 Yeah, it really is. 371 00:28:45,760 --> 00:28:51,640 It's so poignant and hopeful, but realistic and optimistic. 372 00:28:51,640 --> 00:28:54,960 There's so many words that could be used to explain it. 373 00:28:54,960 --> 00:29:00,520 But I think one of my favorite things about the book, going back to what you just mentioned 374 00:29:00,520 --> 00:29:07,400 earlier about having an individual do a sensitivity reading, is that the images in your book also 375 00:29:07,400 --> 00:29:13,920 have image descriptors at the bottom to make it more accessible to everybody. 376 00:29:13,920 --> 00:29:18,840 So it's just really, really powerful that you look at the book, you open the book, and 377 00:29:18,840 --> 00:29:23,160 you're like, oh, this individual is so great at talking the talk, but you also really walk 378 00:29:23,160 --> 00:29:24,200 the walk. 379 00:29:24,200 --> 00:29:30,000 You did sensitivity readings, you have image descriptions, you were talking to Judy Hume. 380 00:29:30,000 --> 00:29:32,320 In the book, you mentioned speaking with Effie Parks. 381 00:29:32,320 --> 00:29:36,920 There are so many experts in this book. 382 00:29:36,920 --> 00:29:41,440 Were you already acquainted with them? 383 00:29:41,440 --> 00:29:42,480 Did you seek them out? 384 00:29:42,480 --> 00:29:45,080 How did you get all of this information in a book? 385 00:29:45,080 --> 00:29:50,720 First of all, I'm not quite sure how I did it, but I think, like, oh, look, here's a 386 00:29:50,720 --> 00:29:51,720 book. 387 00:29:51,720 --> 00:29:53,480 I think it happened. 388 00:29:53,480 --> 00:29:59,240 So there were a handful of people in the book that I was already acquainted with. 389 00:29:59,240 --> 00:30:04,240 The overwhelming majority were just cold calls or emails. 390 00:30:04,240 --> 00:30:10,320 Go into a website and with, and I know I talk about this in the book, with Judy Hume, if 391 00:30:10,320 --> 00:30:14,640 folks don't know her, she is, Google her, she's awesome, known as the mother of the 392 00:30:14,640 --> 00:30:16,180 disability rights movement. 393 00:30:16,180 --> 00:30:20,280 She unfortunately passed last year. 394 00:30:20,280 --> 00:30:22,880 And this is one of her final interviews is in the book. 395 00:30:22,880 --> 00:30:24,160 Oh, wow. 396 00:30:24,160 --> 00:30:27,520 Of course, I was like, I'd love to have her in my book. 397 00:30:27,520 --> 00:30:28,520 Wouldn't that be great? 398 00:30:28,520 --> 00:30:33,040 And in my head, I'm like, no, of course not, because she's way too busy. 399 00:30:33,040 --> 00:30:37,520 She has been doing this at such a high level for so long. 400 00:30:37,520 --> 00:30:41,660 And like, I'm just mom, like, at the park with my kid. 401 00:30:41,660 --> 00:30:47,180 And so I was dragging my feet for so long about even reaching out to her. 402 00:30:47,180 --> 00:30:49,400 And finally, one day I was like, I'm going to do it. 403 00:30:49,400 --> 00:30:52,720 And I know she's not gonna respond, but I'm doing it anyway. 404 00:30:52,720 --> 00:30:58,920 And she responded that same day and was so engaged. 405 00:30:58,920 --> 00:31:06,640 Oh, passionate about this and about the messaging that we are getting to parents about exactly 406 00:31:06,640 --> 00:31:15,680 what you just said, the, the, the real emotional and actual life piece of this, of the joys, 407 00:31:15,680 --> 00:31:21,480 but also here's what's really hard and what's real and about people telling their stories 408 00:31:21,480 --> 00:31:24,880 and about launching parents. 409 00:31:24,880 --> 00:31:29,440 The vast majority of whom have a disabled kid are not disabled themselves. 410 00:31:29,440 --> 00:31:34,760 She was so passionate about how we are launching parents into this world. 411 00:31:34,760 --> 00:31:40,120 And I ended up amazingly being able to meet with her in person at her home. 412 00:31:40,120 --> 00:31:42,600 It was so remarkable. 413 00:31:42,600 --> 00:31:46,680 And I was like, I'm such a nerd right now because this is amazing. 414 00:31:46,680 --> 00:31:51,600 And she ended our meeting by saying, this is too important to stop talking now. 415 00:31:51,600 --> 00:31:52,680 Let's get our calendars. 416 00:31:52,680 --> 00:31:53,680 When can you talk again? 417 00:31:53,680 --> 00:31:54,680 Oh, wow. 418 00:31:54,680 --> 00:31:56,560 And we had subsequent meetings. 419 00:31:56,560 --> 00:31:58,040 She would call me random times. 420 00:31:58,040 --> 00:32:02,000 I was like at the market and I'm like, hang on, let me put down the baby carrots, Judy. 421 00:32:02,000 --> 00:32:03,000 What? 422 00:32:03,000 --> 00:32:04,000 What? 423 00:32:04,000 --> 00:32:05,000 Yep. 424 00:32:05,000 --> 00:32:06,000 I want to hear what you got to say. 425 00:32:06,000 --> 00:32:11,640 She was so engaged and it was a reminder to all of us. 426 00:32:11,640 --> 00:32:17,560 If there are people that we want to reach out to that can help put pieces together in 427 00:32:17,560 --> 00:32:25,320 our own story, whether we are writing a book or figuring out our child's path, so many 428 00:32:25,320 --> 00:32:30,320 people are reachable and engaged. 429 00:32:30,320 --> 00:32:37,040 And the momentum of having so many great experts, I think really allowed so many people to say 430 00:32:37,040 --> 00:32:38,400 yes. 431 00:32:38,400 --> 00:32:44,320 And I was careful to get a group of experts that are diverse, not just in terms of ability, 432 00:32:44,320 --> 00:32:50,000 race, religion, location, age, male, female, all of that. 433 00:32:50,000 --> 00:32:57,440 But also, if you're looking for fancy pants doctors who work at fancy pants places, check, 434 00:32:57,440 --> 00:32:58,440 we got that. 435 00:32:58,440 --> 00:33:03,280 If you're looking for the highest level education lawyers in the country, check, we got that. 436 00:33:03,280 --> 00:33:11,320 But also, we have a nurse who's incredible talking about home health nursing and hospital 437 00:33:11,320 --> 00:33:18,080 nursing and what the experience is like coming into this from a nurse and how you can work 438 00:33:18,080 --> 00:33:20,520 together better. 439 00:33:20,520 --> 00:33:27,960 And people that are the regular everyday experts that we are encountering in our lives all 440 00:33:27,960 --> 00:33:36,360 the time and what we can take from them and how we can work with the experts in our lives 441 00:33:36,360 --> 00:33:43,080 that are not the fancy pants experts, but that it is so helpful to know, here's stuff 442 00:33:43,080 --> 00:33:47,920 if a home health nurse is coming into your home for the first time, here's how you can 443 00:33:47,920 --> 00:33:55,000 make that relationship work, that oftentimes those nuts and bolts things are more helpful 444 00:33:55,000 --> 00:33:59,960 than listening to the fanciest lawyer talk about the highest level disability justice 445 00:33:59,960 --> 00:34:02,760 things. 446 00:34:02,760 --> 00:34:05,080 We can all find this knowledge. 447 00:34:05,080 --> 00:34:13,780 And it was such an honor to have so many people contributing, even the parents who wrote letters. 448 00:34:13,780 --> 00:34:18,700 Some of them I've met in person, some of them I haven't, but we were connected through, 449 00:34:18,700 --> 00:34:23,280 I saw an article from a newspaper in Ohio and I was like, I got to reach out to this 450 00:34:23,280 --> 00:34:26,840 mom and she was amazing. 451 00:34:26,840 --> 00:34:28,080 And she wrote a letter. 452 00:34:28,080 --> 00:34:37,560 So as you know, in this world, like there are so many remarkable connections that just 453 00:34:37,560 --> 00:34:40,160 give us this huge experience. 454 00:34:40,160 --> 00:34:42,240 Absolutely. 455 00:34:42,240 --> 00:34:49,040 I'm also curious about, obviously there's a lot of preparation that goes into writing 456 00:34:49,040 --> 00:34:55,280 a book and that it's very evident that you are yourself a very prepared person because 457 00:34:55,280 --> 00:34:58,160 there's templates, there's examples. 458 00:34:58,160 --> 00:35:04,560 I'm curious in your past life before this, you were not an author. 459 00:35:04,560 --> 00:35:10,440 What made you want to take on the challenge of writing the book and how did you make it 460 00:35:10,440 --> 00:35:16,120 engaging between, how did you, because there's very much a balance. 461 00:35:16,120 --> 00:35:17,540 It's not paperwork. 462 00:35:17,540 --> 00:35:19,020 It's not financial planning. 463 00:35:19,020 --> 00:35:20,020 It's not school. 464 00:35:20,020 --> 00:35:21,020 It's not community. 465 00:35:21,020 --> 00:35:22,020 It's not just parents. 466 00:35:22,020 --> 00:35:23,240 It's not just experts. 467 00:35:23,240 --> 00:35:27,360 It's very woven into the narrative of the book. 468 00:35:27,360 --> 00:35:31,160 How did you make it so engaging like that? 469 00:35:31,160 --> 00:35:32,280 Thank you for asking. 470 00:35:32,280 --> 00:35:38,360 And I so appreciate that you read the book and feel all those things. 471 00:35:38,360 --> 00:35:45,800 So for me, I come from a career with pretty much no practical application in the world, 472 00:35:45,800 --> 00:35:51,120 which is I spent most of my career coming up with ideas for talking animal movies and 473 00:35:51,120 --> 00:35:52,120 that's a job. 474 00:35:52,120 --> 00:35:53,960 Who knew? 475 00:35:53,960 --> 00:36:02,180 So I'm very fortunate that I was a development executive, which means coming up with ideas 476 00:36:02,180 --> 00:36:08,600 and making stories better, working mostly in feature animation, companies you've heard 477 00:36:08,600 --> 00:36:14,440 of in companies you haven't heard of before, working on all kinds of cool movies, some 478 00:36:14,440 --> 00:36:19,680 live action stuff too, but primarily talking animal movies, which is awesome and really 479 00:36:19,680 --> 00:36:20,680 fun. 480 00:36:20,680 --> 00:36:23,680 And I love those. 481 00:36:23,680 --> 00:36:30,960 And transitioned from that into screenwriting and into writing fiction books. 482 00:36:30,960 --> 00:36:36,960 I never in a million years thought I would write nonfiction. 483 00:36:36,960 --> 00:36:44,200 When I finally felt like it's time I have to write this book, I was literally Googling 484 00:36:44,200 --> 00:36:50,720 how to write a nonfiction book proposal because I don't know, but it worked out. 485 00:36:50,720 --> 00:36:58,600 And I think what is the piece for me that allows all of the conversational illness and 486 00:36:58,600 --> 00:37:06,320 the storytelling and the approachability of this is that it turns out coming up with ideas 487 00:37:06,320 --> 00:37:10,880 for talking animal movies actually does teach you some real life skills. 488 00:37:10,880 --> 00:37:14,520 And for me, it is the storytelling. 489 00:37:14,520 --> 00:37:22,480 And so I think in terms of storytelling very automatically because I didn't just sit down 490 00:37:22,480 --> 00:37:26,920 one day and write a book, even though I had been managing a grocery store for the last 491 00:37:26,920 --> 00:37:34,800 two decades, I sat down and wrote this book having lived in the world of writing and storytelling 492 00:37:34,800 --> 00:37:37,800 for so many years. 493 00:37:37,800 --> 00:37:45,880 And really through other writing and things I had done had developed a voice, which is 494 00:37:45,880 --> 00:37:54,000 basically this is how I talk in my head and I think in lists and bullet points and weird 495 00:37:54,000 --> 00:37:56,800 quips and conversations and things. 496 00:37:56,800 --> 00:38:05,120 But there are books out there that are tremendous and are helpful and wonderful. 497 00:38:05,120 --> 00:38:12,480 And those books might be memoirs written by these beautiful eloquent author parents of 498 00:38:12,480 --> 00:38:14,520 how they've done this. 499 00:38:14,520 --> 00:38:20,260 There are books that are here's a lawyer saying, I'm going to walk you through this process 500 00:38:20,260 --> 00:38:23,680 because I'm a lawyer. 501 00:38:23,680 --> 00:38:27,960 And they're offering different things. 502 00:38:27,960 --> 00:38:32,160 But for me, I was like, I don't feel called to write a memoir. 503 00:38:32,160 --> 00:38:33,760 There's so many great memoirs out there. 504 00:38:33,760 --> 00:38:35,800 I feel like I don't need to do that. 505 00:38:35,800 --> 00:38:37,800 Other people are doing a great job. 506 00:38:37,800 --> 00:38:43,200 I certainly, you know, I'm the talking animal mom. 507 00:38:43,200 --> 00:38:49,640 I can't write that clinical hero or the efficient steps book. 508 00:38:49,640 --> 00:38:57,720 But what I can do is I can use storytelling, whether it's my own story, whether it's sourcing 509 00:38:57,720 --> 00:39:03,600 stories in these letters from other parents that are in every chapter, whether it's talking 510 00:39:03,600 --> 00:39:09,400 to experts of what is the beginning, middle and end of this conversation. 511 00:39:09,400 --> 00:39:17,860 And I think that's what makes this book so unique and such a singular resource is storytelling 512 00:39:17,860 --> 00:39:20,720 is so universal. 513 00:39:20,720 --> 00:39:25,760 And writing this and even when I read this, I'm like, oh, this is good. 514 00:39:25,760 --> 00:39:26,760 I wish I'd written. 515 00:39:26,760 --> 00:39:28,560 Oh, like, oh, I did write that. 516 00:39:28,560 --> 00:39:33,040 Weird, super weird, but great. 517 00:39:33,040 --> 00:39:41,920 If we bring our community and other parent caregivers in from a universal place where 518 00:39:41,920 --> 00:39:48,200 we are starting with here is the heart of this and my story is your story is the other 519 00:39:48,200 --> 00:39:50,080 person's story. 520 00:39:50,080 --> 00:39:52,680 Your diagnoses are not going to be the same as my child's. 521 00:39:52,680 --> 00:39:58,320 He literally might be the only one with his thing, but there is so much that's universal 522 00:39:58,320 --> 00:40:00,360 in our stories. 523 00:40:00,360 --> 00:40:08,680 And once we feel connected to the parent caregiving experience, then all the crappy paperwork 524 00:40:08,680 --> 00:40:12,280 and figuring out like, okay, I'm going to fill out this template today. 525 00:40:12,280 --> 00:40:14,560 I'm going to go through this worksheet. 526 00:40:14,560 --> 00:40:25,000 All of that feels doable in a way that a super clinical book doesn't feel doable to me because 527 00:40:25,000 --> 00:40:29,700 I don't feel that connection to it or to myself. 528 00:40:29,700 --> 00:40:33,480 It just feels like another thing on the list. 529 00:40:33,480 --> 00:40:37,920 And most of these templates have been sitting on my computer and are things I created in 530 00:40:37,920 --> 00:40:38,920 the last decade. 531 00:40:38,920 --> 00:40:43,320 And I would like email to a friend here and there when they needed it. 532 00:40:43,320 --> 00:40:50,140 But I really wanted to say, how can we feel connected to the work of parent caregiving 533 00:40:50,140 --> 00:40:57,920 so that it feels more purposeful and meaningful and we can high five each other when we do 534 00:40:57,920 --> 00:41:02,720 that future care plan that has been hanging over our head for one day when we die and 535 00:41:02,720 --> 00:41:09,600 our kid can't communicate that he loves the song Head, Shoulders, Knees, and Toes. 536 00:41:09,600 --> 00:41:12,780 Creating that connection is so important to me. 537 00:41:12,780 --> 00:41:20,000 And I love fostering other parents to tell the story that only they can tell. 538 00:41:20,000 --> 00:41:21,800 It might be a blog post. 539 00:41:21,800 --> 00:41:23,200 It might be a podcast. 540 00:41:23,200 --> 00:41:27,200 It might be a book, a memoir, fiction, like whatever that is. 541 00:41:27,200 --> 00:41:36,680 And I do do worksheets, workshops with parents of like, you have something to contribute, 542 00:41:36,680 --> 00:41:43,560 but what is your unique thing that you have to share with this community? 543 00:41:43,560 --> 00:41:49,000 And I think so much in this speaks to not just community of parent caregivers of disabled 544 00:41:49,000 --> 00:41:55,400 children, but also bigger picture because everybody's got stuff. 545 00:41:55,400 --> 00:41:59,500 If we're lucky, we have insurance that we have to deal with. 546 00:41:59,500 --> 00:42:01,720 If we don't, we got to figure that out. 547 00:42:01,720 --> 00:42:05,880 If like, we all have stuff that we have to figure out. 548 00:42:05,880 --> 00:42:11,800 And I think the book works because there is so much universality in it. 549 00:42:11,800 --> 00:42:17,600 And it I will always be on this journey for forever. 550 00:42:17,600 --> 00:42:20,280 And none of us are ever going to know any of this. 551 00:42:20,280 --> 00:42:23,560 But we do know that we're in it together. 552 00:42:23,560 --> 00:42:29,520 We've talked a lot about, and it's a big portion of the book too, about insurance and setting 553 00:42:29,520 --> 00:42:35,080 up for transition to adulthood and what happens when we eventually as parents are no longer 554 00:42:35,080 --> 00:42:37,400 here to be the support. 555 00:42:37,400 --> 00:42:43,080 At any point in your journey, were you in contact with your state's family to family 556 00:42:43,080 --> 00:42:48,320 health information center, or were they combined with your parent training and information 557 00:42:48,320 --> 00:42:50,440 center when you reached out? 558 00:42:50,440 --> 00:42:57,120 So first of all, again, I'm going to come back to every state has a parent training 559 00:42:57,120 --> 00:43:02,200 and information center, and this needs to be the first thing people tell us. 560 00:43:02,200 --> 00:43:06,400 And it took me forever to figure that out. 561 00:43:06,400 --> 00:43:12,320 And I literally was piecing together bits and pieces from other parents. 562 00:43:12,320 --> 00:43:19,680 We were connected with our state social service department and getting services there from 563 00:43:19,680 --> 00:43:25,320 an early age because our son was presenting with different disabilities from a very young 564 00:43:25,320 --> 00:43:27,480 age. 565 00:43:27,480 --> 00:43:36,920 I piecemealed everything together in such an inefficient and reinventing the wheel sort 566 00:43:36,920 --> 00:43:37,920 of a way. 567 00:43:37,920 --> 00:43:40,680 And I'm like, Oh, I could have just made a phone call. 568 00:43:40,680 --> 00:43:41,680 What? 569 00:43:41,680 --> 00:43:50,360 And also something that I did in the course of this book, I talked to so many parents 570 00:43:50,360 --> 00:43:52,360 and parents. 571 00:43:52,360 --> 00:43:59,560 And I love that you talk about in your podcast, the importance of getting information from 572 00:43:59,560 --> 00:44:06,440 local sources, organizations and parents because each state is different, even under the same 573 00:44:06,440 --> 00:44:08,200 federal guidelines. 574 00:44:08,200 --> 00:44:15,480 And within each state, your city, county, area, school district, it can all be very 575 00:44:15,480 --> 00:44:16,800 different. 576 00:44:16,800 --> 00:44:24,400 So it's really important to individualize and also to take into account that not everyone 577 00:44:24,400 --> 00:44:28,720 is coming into this from the same financial position. 578 00:44:28,720 --> 00:44:34,640 Not only is there no shame in wherever you are financially, whether you're just like, 579 00:44:34,640 --> 00:44:37,000 I'm rolling around money because isn't that fun? 580 00:44:37,000 --> 00:44:39,160 Wouldn't that be nice? 581 00:44:39,160 --> 00:44:42,080 Let me know if you're that person because I want to talk to you and know what that's 582 00:44:42,080 --> 00:44:43,080 like. 583 00:44:43,080 --> 00:44:45,160 Yeah, reach out to us in the comments, right? 584 00:44:45,160 --> 00:44:48,760 If you're that person, I can tell you where to donate some money. 585 00:44:48,760 --> 00:44:54,400 Like there are a lot of disabled run organizations that need that money. 586 00:44:54,400 --> 00:45:03,360 So what do you do if you are a parent after you've owned the fact that there is no shame 587 00:45:03,360 --> 00:45:08,560 in where I am financially, even if I'm in debt, even if I am struggling or scared or 588 00:45:08,560 --> 00:45:16,320 whatever, what do I do if I can't put aside money for a future care plan or do this or 589 00:45:16,320 --> 00:45:18,800 do this? 590 00:45:18,800 --> 00:45:24,320 And I did an experiment where I was like, I'm going to Google Department of Developmental 591 00:45:24,320 --> 00:45:32,680 Services, California, which is where I live, Indiana, Iowa, like Googled those things. 592 00:45:32,680 --> 00:45:36,680 And each state has a Department of Developmental Services. 593 00:45:36,680 --> 00:45:42,280 And I emailed a random person on their website, somebody who looks like they know how to do 594 00:45:42,280 --> 00:45:43,280 this. 595 00:45:43,280 --> 00:45:51,840 And I said, Hey, I am working with and helping advocate for families, some of whom do not 596 00:45:51,840 --> 00:45:58,720 have the resources to plan for their child into the future and to memorialize. 597 00:45:58,720 --> 00:46:03,040 Like what do we do? 598 00:46:03,040 --> 00:46:06,480 And I got responses. 599 00:46:06,480 --> 00:46:13,640 They were so non-judgmental, matter of fact, and helpful. 600 00:46:13,640 --> 00:46:18,920 The people I emailed were not necessarily the people who had the answers. 601 00:46:18,920 --> 00:46:24,040 When they were not the people with the answers, they copied the people who were. 602 00:46:24,040 --> 00:46:29,760 People gave me their direct phone numbers, their direct emails and said, please feel 603 00:46:29,760 --> 00:46:32,280 free to reach out. 604 00:46:32,280 --> 00:46:35,000 There are resources available. 605 00:46:35,000 --> 00:46:38,880 The answers might not always be what we want to hear. 606 00:46:38,880 --> 00:46:40,120 I can tell you what I want to hear. 607 00:46:40,120 --> 00:46:42,040 I want to hear this is easy. 608 00:46:42,040 --> 00:46:45,840 It's not for even with the person throwing around like it's not going to be easy for 609 00:46:45,840 --> 00:46:46,840 you either. 610 00:46:46,840 --> 00:46:49,480 So just take a seat. 611 00:46:49,480 --> 00:46:55,880 It's not going to be easy, but even if you are starting from a path of, I don't know 612 00:46:55,880 --> 00:47:02,640 what I'm doing, email someone at your department of developmental services or even better, 613 00:47:02,640 --> 00:47:07,440 your parent training and information center, because that's probably going to be actual 614 00:47:07,440 --> 00:47:11,160 parents who are actually going through this. 615 00:47:11,160 --> 00:47:17,980 When I very first started on this journey, the first diagnosis that we had for our son 616 00:47:17,980 --> 00:47:26,040 as we've been amassing many on the menu was cortical vision impairment, which means cortical 617 00:47:26,040 --> 00:47:31,840 brain vision impairments means you're seeing is impaired. 618 00:47:31,840 --> 00:47:38,000 When his first specialist was a neuro ophthalmologist who said he has cortical vision impairment, 619 00:47:38,000 --> 00:47:44,080 which for him means the physical structures are in place, but how his brain is processing 620 00:47:44,080 --> 00:47:49,880 visual information, there is a disconnect and there could be a huge range with CVI for 621 00:47:49,880 --> 00:47:51,040 him. 622 00:47:51,040 --> 00:47:52,320 His range was zero. 623 00:47:52,320 --> 00:47:53,600 He had zero vision. 624 00:47:53,600 --> 00:47:58,880 He was blind and with CVI, there can be no improvement. 625 00:47:58,880 --> 00:48:00,980 There can be tremendous improvement. 626 00:48:00,980 --> 00:48:04,320 There can be everything in between. 627 00:48:04,320 --> 00:48:10,040 And I had this like tiny baby and I'm like, what now? 628 00:48:10,040 --> 00:48:17,280 So I literally went home from that appointment and I half jokingly say my book is the alternative 629 00:48:17,280 --> 00:48:21,960 to go home, Google and cry because that's what we all do when we get the diagnosis because 630 00:48:21,960 --> 00:48:25,520 nobody says parent training and information center. 631 00:48:25,520 --> 00:48:29,280 Nobody says here's a book with the foundational info before you Google. 632 00:48:29,280 --> 00:48:32,920 Everybody's just like, bye, good luck on the internet, which is horrible. 633 00:48:32,920 --> 00:48:35,320 That'll be $25 on your way out, right? 634 00:48:35,320 --> 00:48:36,320 Yes. 635 00:48:36,320 --> 00:48:37,320 Oh my gosh. 636 00:48:37,320 --> 00:48:38,320 Don't forget to do a copay. 637 00:48:38,320 --> 00:48:40,320 Do a writer review for the hospital. 638 00:48:40,320 --> 00:48:43,120 What are we doing? 639 00:48:43,120 --> 00:48:51,480 So I literally Googled blind children in Los Angeles because I was like, what do I do? 640 00:48:51,480 --> 00:48:58,120 And organizations pulled up and literally like I was as much of a wreck as a person 641 00:48:58,120 --> 00:49:03,600 could be while holding a kid who was either fast asleep or crying at the time. 642 00:49:03,600 --> 00:49:06,040 I don't even remember because I was such a mess. 643 00:49:06,040 --> 00:49:11,920 And I called the first organization that popped up on the list and I was literally like the 644 00:49:11,920 --> 00:49:16,840 blubbering, like I'm crying and I don't know what to do, mom. 645 00:49:16,840 --> 00:49:21,960 And the amazing receptionist didn't hang up on me, listened to me, figured out what I 646 00:49:21,960 --> 00:49:22,960 was saying. 647 00:49:22,960 --> 00:49:26,120 And she said, hold one sec, I'm going to connect you to Diana. 648 00:49:26,120 --> 00:49:30,600 And she transferred me to Diana and I have a years long relationship with this organization 649 00:49:30,600 --> 00:49:32,740 now. 650 00:49:32,740 --> 00:49:37,640 Because I literally called, I Googled and I called the first organization and I'm like, 651 00:49:37,640 --> 00:49:42,000 I have no idea what to do. 652 00:49:42,000 --> 00:49:47,240 And reaching out to organizations, to parent training and information centers, to other 653 00:49:47,240 --> 00:49:50,840 parents and saying, I have no idea what I'm doing. 654 00:49:50,840 --> 00:49:52,960 Where do I start? 655 00:49:52,960 --> 00:49:59,680 Is actually really powerful because there are people who can't, nobody's going to figure 656 00:49:59,680 --> 00:50:05,000 out this whole journey for you because that's not actually how life works in any scenario. 657 00:50:05,000 --> 00:50:11,720 But there are people who can say, here is the next step or here is just something to 658 00:50:11,720 --> 00:50:13,920 hang on to. 659 00:50:13,920 --> 00:50:18,000 And you got to start somewhere. 660 00:50:18,000 --> 00:50:25,560 And again, how can we empower parents beyond go home, Google and cry? 661 00:50:25,560 --> 00:50:28,160 Because what a mess that is. 662 00:50:28,160 --> 00:50:31,640 And we all know what Google can do when you Google, right? 663 00:50:31,640 --> 00:50:33,640 You end up crying more every time. 664 00:50:33,640 --> 00:50:35,920 And I'm like, is my child pregnant? 665 00:50:35,920 --> 00:50:36,920 Look at what he said. 666 00:50:36,920 --> 00:50:37,920 He has all these symptoms. 667 00:50:37,920 --> 00:50:42,360 He's an infant and he's a boy, but maybe he's pregnant. 668 00:50:42,360 --> 00:50:43,360 I don't know. 669 00:50:43,360 --> 00:50:44,360 It could be anything. 670 00:50:44,360 --> 00:50:45,880 I'm not a doctor. 671 00:50:45,880 --> 00:50:51,880 And even friends and experts I've talked to who are doctors or who are educators who work 672 00:50:51,880 --> 00:50:58,280 in special education who launch into this, who might say, oh, I'm disabled. 673 00:50:58,280 --> 00:50:59,280 I got this. 674 00:50:59,280 --> 00:51:00,280 My kid's disabled. 675 00:51:00,280 --> 00:51:06,200 I find themselves saying, oh, this is very different when it's your kid. 676 00:51:06,200 --> 00:51:12,200 And oh, I might be a neurologist, but whoa, how do I get early intervention services? 677 00:51:12,200 --> 00:51:14,600 What's that all about? 678 00:51:14,600 --> 00:51:15,600 It's hard for everybody. 679 00:51:15,600 --> 00:51:21,600 Well, I know that you're incredibly busy out here promoting this book with and going on 680 00:51:21,600 --> 00:51:25,200 podcasts and radio shows and all of that. 681 00:51:25,200 --> 00:51:26,880 But do you have time for just two more questions? 682 00:51:26,880 --> 00:51:27,880 Oh my gosh. 683 00:51:27,880 --> 00:51:32,520 I have as much time for you as you want as long as I can give you one. 684 00:51:32,520 --> 00:51:34,320 One like, please do this. 685 00:51:34,320 --> 00:51:39,960 Can you create a workshop for other parents and training information centers on how to 686 00:51:39,960 --> 00:51:42,960 do a podcast that is useful? 687 00:51:42,960 --> 00:51:48,600 Like, but I'm so serious. 688 00:51:48,600 --> 00:51:55,600 You have real conversations where it's just like I'm hanging out and it adds the universality 689 00:51:55,600 --> 00:51:59,000 plus the here's how to actually do this in this state. 690 00:51:59,000 --> 00:52:00,760 So that is my ask for you. 691 00:52:00,760 --> 00:52:02,600 And then you can keep me as long as you want. 692 00:52:02,600 --> 00:52:06,600 Well, I very, very, very much appreciate you saying that. 693 00:52:06,600 --> 00:52:11,800 And I also hope to be doing something similar to that in the future for other parent training 694 00:52:11,800 --> 00:52:16,560 information centers, not only in our region, but hopefully across the nation. 695 00:52:16,560 --> 00:52:22,240 So I'll keep my fingers crossed and I'm sure I'll keep in touch and let you know how to 696 00:52:22,240 --> 00:52:23,240 please do. 697 00:52:23,240 --> 00:52:24,240 Please do. 698 00:52:24,240 --> 00:52:25,240 Absolutely. 699 00:52:25,240 --> 00:52:31,920 I think the last two questions that I have, especially not only as someone who gets to 700 00:52:31,920 --> 00:52:37,440 the privilege of having a conversation with you, but also as a parent of two autistic 701 00:52:37,440 --> 00:52:42,800 children myself, when you're, when you're writing this book and you're putting all of 702 00:52:42,800 --> 00:52:48,240 this together, you close the book, you're done, you're submitting it. 703 00:52:48,240 --> 00:52:52,840 What are you hoping that parents walk away from in the end? 704 00:52:52,840 --> 00:52:57,960 Like if they remember one thing or they leave with a feeling, what, what is your hope that 705 00:52:57,960 --> 00:52:58,960 it is? 706 00:52:58,960 --> 00:53:06,760 You know, there's certainly the, you will feel better of it and the, oh, here's foundational 707 00:53:06,760 --> 00:53:10,400 actual information to build your journey. 708 00:53:10,400 --> 00:53:12,240 That is what I started out. 709 00:53:12,240 --> 00:53:16,040 Like I hope parents get this and I believe they do. 710 00:53:16,040 --> 00:53:21,000 And I believe this book does a great service in giving that. 711 00:53:21,000 --> 00:53:28,240 But the thing above all else that I hope parents take away and that I certainly took away is 712 00:53:28,240 --> 00:53:35,280 get information about disability from disabled people. 713 00:53:35,280 --> 00:53:39,240 Listen to actual real life disabled people. 714 00:53:39,240 --> 00:53:46,720 There are incredible content creators, leaders of organizations, bloggers, like there are 715 00:53:46,720 --> 00:53:54,720 so many people who have given us this incredible gift of sharing their life experience and 716 00:53:54,720 --> 00:54:01,440 it is free and it is available to you online right now. 717 00:54:01,440 --> 00:54:09,200 You will learn a tremendous amount, not just about disability, not just about your child, 718 00:54:09,200 --> 00:54:17,920 but also about yourself and your own bias, preconception, like whatever it is we are 719 00:54:17,920 --> 00:54:27,280 bringing to the table, listening to and following real life disabled individuals is a safe and 720 00:54:27,280 --> 00:54:34,280 easy way to say to yourself or out loud to the world. 721 00:54:34,280 --> 00:54:42,120 Now that I have new and different and better and real information, I now think about this 722 00:54:42,120 --> 00:54:43,520 differently. 723 00:54:43,520 --> 00:54:52,080 I now have the ability to do better because I am becoming educated from real life sources. 724 00:54:52,080 --> 00:54:56,880 And in all of us in all areas, we are going to be wrong and we need to be able to admit 725 00:54:56,880 --> 00:55:04,120 that and if we can all say now that I have better information, I am going to make different 726 00:55:04,120 --> 00:55:12,720 decisions or approach things, people, ideas, paperwork differently is really exciting. 727 00:55:12,720 --> 00:55:14,880 Know better, do better, right? 728 00:55:14,880 --> 00:55:15,880 Yes. 729 00:55:15,880 --> 00:55:17,880 I love that. 730 00:55:17,880 --> 00:55:24,320 You mentioned a few questions ago about how you were doing workshops with parents or for 731 00:55:24,320 --> 00:55:25,320 parents. 732 00:55:25,320 --> 00:55:29,640 Is there a way that people can reach out to you and be a part of that or is that something 733 00:55:29,640 --> 00:55:31,120 you are working towards? 734 00:55:31,120 --> 00:55:32,120 Absolutely. 735 00:55:32,120 --> 00:55:39,880 So my website, kellycohman.com, it is K-E-L-L-E-Y, Coleman.com. 736 00:55:39,880 --> 00:55:46,440 And join, reach out to me there, has my Instagram link, all of that. 737 00:55:46,440 --> 00:55:49,520 And I will soon be posting these workshops. 738 00:55:49,520 --> 00:55:54,320 I always conduct them for free. 739 00:55:54,320 --> 00:56:00,080 I am so passionate about parents learning to share their stories. 740 00:56:00,080 --> 00:56:04,400 That was a big takeaway from my Judy Heumann conversation about needing more people to 741 00:56:04,400 --> 00:56:06,600 share their stories. 742 00:56:06,600 --> 00:56:14,200 And especially there are a lot of really great people who are sharing their stories, who 743 00:56:14,200 --> 00:56:15,200 are a whole lot of white ladies. 744 00:56:15,200 --> 00:56:16,960 I am a whole lot of white ladies. 745 00:56:16,960 --> 00:56:20,600 I have nothing against white ladies. 746 00:56:20,600 --> 00:56:34,360 But we desperately need diverse stories who are approaching things from different angles, 747 00:56:34,360 --> 00:56:39,200 cultures, points of views, perspectives. 748 00:56:39,200 --> 00:56:41,800 And it is way too hard to find those. 749 00:56:41,800 --> 00:56:49,360 So I am on a mission this year to really foster diverse families, individuals telling their 750 00:56:49,360 --> 00:56:51,480 stories. 751 00:56:51,480 --> 00:56:55,160 You do not have to be a writer to tell or to share your story. 752 00:56:55,160 --> 00:56:58,880 There are so many different ways to approach this. 753 00:56:58,880 --> 00:57:03,640 If you can't spell to save your life, cool. 754 00:57:03,640 --> 00:57:06,800 If you don't know how to type, cool, just dictate it. 755 00:57:06,800 --> 00:57:08,280 That's not the name of the game. 756 00:57:08,280 --> 00:57:13,800 The name of the game is, I want to learn from your experience. 757 00:57:13,800 --> 00:57:17,280 So if you could just write a book, it would be great. 758 00:57:17,280 --> 00:57:21,360 So we need you and we need your voice. 759 00:57:21,360 --> 00:57:25,280 And just so everybody knows, all the ways to contact you I have, and they'll be linked 760 00:57:25,280 --> 00:57:26,560 down in the description below. 761 00:57:26,560 --> 00:57:28,240 So we hope you reach out. 762 00:57:28,240 --> 00:57:34,320 But I think my final question is, where, oh, is it going to show it? 763 00:57:34,320 --> 00:57:36,320 Oh, oh, oh, maybe. 764 00:57:36,320 --> 00:57:37,440 Oh, thank you. 765 00:57:37,440 --> 00:57:39,920 Thank you for coming in to support me. 766 00:57:39,920 --> 00:57:44,680 Where can we buy copies of this book for our friends, our families, our neighbors, our 767 00:57:44,680 --> 00:57:46,500 doctors? 768 00:57:46,500 --> 00:57:48,160 Where can we find it? 769 00:57:48,160 --> 00:57:49,160 Thank you. 770 00:57:49,160 --> 00:57:56,640 So release date is March 12th, and it is available for preorder everywhere at all the book places. 771 00:57:56,640 --> 00:58:02,480 My website has links not only to Amazon, but if you want to shop disabled owned bookstores, 772 00:58:02,480 --> 00:58:04,160 that's a thing. 773 00:58:04,160 --> 00:58:08,520 And there are lists of those online in your local area, or they'll all send books to you 774 00:58:08,520 --> 00:58:10,600 as well. 775 00:58:10,600 --> 00:58:17,960 It is available everywhere, and even we all know somebody who needs this book. 776 00:58:17,960 --> 00:58:22,560 And so whether it is you or whether it is putting it in the Little Free Library in your 777 00:58:22,560 --> 00:58:28,840 neighborhood, or asking your local library to get it, if you cannot afford a book, there 778 00:58:28,840 --> 00:58:34,640 are a lot of people can't pay $19 for a book, that is just fine. 779 00:58:34,640 --> 00:58:37,160 Email your local library, send them a link. 780 00:58:37,160 --> 00:58:39,660 I want this in every library. 781 00:58:39,660 --> 00:58:47,040 This information that is usable and really easy to read and understand needs to be available 782 00:58:47,040 --> 00:58:50,040 for free in every single library. 783 00:58:50,040 --> 00:58:54,920 I would rather, I want everybody buy it, of course, but more than anything, it needs to 784 00:58:54,920 --> 00:58:58,000 be in every library and doctor's office. 785 00:58:58,000 --> 00:59:05,960 Because if this information is not available for free to everyone equally, then it continues, 786 00:59:05,960 --> 00:59:12,400 because you know that gap in access to information, and there is not only no shame in your income 787 00:59:12,400 --> 00:59:20,920 level, but your child should not suffer from the fact that you can't afford to buy a book, 788 00:59:20,920 --> 00:59:25,840 access this resource, do the things, it all needs to be available for free. 789 00:59:25,840 --> 00:59:26,840 Thank you. 790 00:59:26,840 --> 00:59:27,840 Thank you for your time. 791 00:59:27,840 --> 00:59:30,800 Thank you for writing this book. 792 00:59:30,800 --> 00:59:33,880 Thank you for, just thank you. 793 00:59:33,880 --> 00:59:35,040 I really appreciate it. 794 00:59:35,040 --> 00:59:38,360 You can tell that you poured your heart and soul into this book. 795 00:59:38,360 --> 00:59:40,440 It is so comprehensive. 796 00:59:40,440 --> 00:59:46,360 It should be, you know, if I lived in a utopia, every parent got a now what guide and this 797 00:59:46,360 --> 00:59:48,680 book anytime they got a diagnosis. 798 00:59:48,680 --> 00:59:51,800 So thank you so much for your time. 799 00:59:51,800 --> 00:59:52,800 Thank you. 800 00:59:52,800 --> 00:59:59,880 And anytime I can be helpful to you and your community, I genuinely love what you are doing. 801 00:59:59,880 --> 01:00:11,560 And I really wish someone had given me your podcast a decade ago. 802 01:00:11,560 --> 01:00:16,680 Thank you so much to everyone out there in podcast land for listening in. 803 01:00:16,680 --> 01:00:25,600 If you are in Idaho or planning on moving to Idaho and have any questions on systems 804 01:00:25,600 --> 01:00:34,240 or services for children with disabilities, please reach out to us on our website at ipulidaho.org. 805 01:00:34,240 --> 01:00:43,080 That's I P U L Idaho.org until then I'm Allison and this has been unlimited parenting. 806 01:00:43,080 --> 01:00:44,080 Thanks for listening. 807 01:00:44,080 --> 01:00:55,600 We'll see you next time.