WEBVTT 1 00:00:04.719 --> 00:00:09.240 Hi, I'm your host, Doctor Lorie, and welcome to Universally Unique, 2 00:00:09.400 --> 00:00:13.800 Exploring the neurodiverse world of the Extraordinary. This podcast foster's 3 00:00:13.880 --> 00:00:20.079 curiosity and understanding about neurodiversity while empowering individuals with tools 4 00:00:20.120 --> 00:00:24.839 for acceptance and inclusion in classrooms, the workplace, and communities. 5 00:00:25.160 --> 00:00:29.640 Featuring shared stories of neurodiverse life experiences, it sheds light 6 00:00:29.760 --> 00:00:34.240 on navigating a world not designed for diversity. Universally Unique 7 00:00:34.359 --> 00:00:42.679 starts now, Hi, this is doctor Lorie. My guest today 8 00:00:42.840 --> 00:00:48.200 is Kelly Hall, who is the parent of a neurodivergent individual, 9 00:00:48.439 --> 00:00:52.479 and we're going to hear her story about her family 10 00:00:52.520 --> 00:00:54.840 and her son in a little bit. But first we're 11 00:00:54.880 --> 00:00:58.240 going to start by taking three box breaths. 12 00:00:58.880 --> 00:01:00.840 Count us through those. 13 00:01:01.200 --> 00:01:03.840 We're going to breathe in for four, hold for four, 14 00:01:04.280 --> 00:01:08.560 breathe out for four, hold for four breathe then so 15 00:01:08.680 --> 00:01:16.000 we'll start and breathe then four three two one hold, 16 00:01:16.680 --> 00:01:24.799 four three two one breathe out four three two one 17 00:01:26.200 --> 00:01:34.439 hold four three two one breathe then four three two 18 00:01:34.879 --> 00:01:43.000 one hold, four three two one breathe out four three 19 00:01:43.439 --> 00:01:51.280 two one hold for three two one breathe then four 20 00:01:51.799 --> 00:01:59.840 three two one hold for three two one, breathe out 21 00:02:00.319 --> 00:02:07.400 for three to one, hold for three to one, and 22 00:02:07.480 --> 00:02:12.719 a nice sigh. I like to start with with a 23 00:02:12.719 --> 00:02:15.879 little breathing. I think everybody kind of needs needs that. 24 00:02:16.159 --> 00:02:20.360 So we're had, We're like wrapping up a school year 25 00:02:20.479 --> 00:02:24.400 here in Connecticut, and Kelly as an administrator at middle school. 26 00:02:24.879 --> 00:02:28.520 So I'm highly appreciative that she was willing to join 27 00:02:28.599 --> 00:02:31.599 us at this time of the year. And I don't 28 00:02:31.639 --> 00:02:33.759 know how it's been for other folks, but it seems 29 00:02:33.800 --> 00:02:37.400 like in Connecticut this has been a really challenging school year. 30 00:02:38.000 --> 00:02:41.520 So well, like what kind of well, switch gears a 31 00:02:41.520 --> 00:02:45.719 little bit and focus a little bit more on on 32 00:02:45.840 --> 00:02:49.080 your son, Sam. So why don't you tell us a 33 00:02:49.120 --> 00:02:52.039 little bit about the journey that you've been on with Sam. 34 00:02:52.560 --> 00:02:55.400 So, thank you for having me first. I appreciate you 35 00:02:55.439 --> 00:02:59.639 to mind and talk about my Sam. So I think 36 00:02:59.680 --> 00:03:04.280 I'd like to start just with recognizing that Sammy was 37 00:03:04.360 --> 00:03:10.120 an answered prayer after many years of infertility where we 38 00:03:10.199 --> 00:03:13.199 struggled in all those negative pregnancy tests. If you've ever 39 00:03:13.199 --> 00:03:16.280 been through that before, it can be kind of demoralizing 40 00:03:16.319 --> 00:03:20.759 after a while. So from the moment that we finally 41 00:03:20.800 --> 00:03:23.639 had that positive pregnancy test. Until today, he has brought 42 00:03:23.639 --> 00:03:28.400 tremendous joy to our family. My sister actually took a 43 00:03:28.400 --> 00:03:30.479 picture right after I had had him, you know, kind 44 00:03:30.479 --> 00:03:32.479 of wheeled me out into the waiting room, and there's 45 00:03:32.520 --> 00:03:36.120 nothing you can see but elation. Just this incredible joy 46 00:03:36.199 --> 00:03:39.520 that I finally got to be a mom. And you know, 47 00:03:39.599 --> 00:03:41.759 meeting him and seeing him for the first time, it's 48 00:03:42.000 --> 00:03:45.639 it's a unique experience because you're meeting a stranger. Yes 49 00:03:45.719 --> 00:03:48.439 you made them, but you don't know anything about them, 50 00:03:48.560 --> 00:03:50.680 and you're getting to know them from the moment that 51 00:03:50.800 --> 00:03:57.319 they're born. And so Sammy was typically developing until about 52 00:03:57.400 --> 00:04:02.360 two when he had a regression. Looking back, you know, 53 00:04:02.479 --> 00:04:07.159 with different eyes, knowing more about neurodiversity, he definitely had 54 00:04:07.199 --> 00:04:09.800 some sensory issues kind of from the beginning, you know, 55 00:04:10.240 --> 00:04:12.400 as an infant was kind of difficult to settle. You know, 56 00:04:12.439 --> 00:04:14.960 I read all the books, right, we were very you know, 57 00:04:15.039 --> 00:04:16.800 meanwhile left enough to know that I'm going to read 58 00:04:16.839 --> 00:04:19.560 everything that there is. Yeah, you know, I had the 59 00:04:19.680 --> 00:04:22.959 sound machine, I had all of the things, which is 60 00:04:23.000 --> 00:04:27.279 the exact opposite. But my son needed to settle, but 61 00:04:27.399 --> 00:04:30.120 figured out pretty quickly that in order for him to sleep, 62 00:04:30.120 --> 00:04:33.160 He had to have physical contact, the room had to 63 00:04:33.199 --> 00:04:35.879 be dark, there couldn't be a sound machine, and I 64 00:04:35.959 --> 00:04:38.519 even had to slow my breathing down so that he 65 00:04:38.519 --> 00:04:41.399 could kind of settle and relax. So from kind of 66 00:04:41.399 --> 00:04:43.319 the beginning, but up until then, you know, he walked 67 00:04:43.319 --> 00:04:46.040 at nine and a half months, had joint attention, was 68 00:04:46.079 --> 00:04:48.959 looking and pointing, you know, kind of that shared experience 69 00:04:49.000 --> 00:04:53.000 with us. And then it was about right around when 70 00:04:53.040 --> 00:04:56.759 he was two, I got pregnant with my second son, Michael, 71 00:04:57.360 --> 00:05:01.800 and I was so sick with morning sickness and I 72 00:05:01.839 --> 00:05:05.519 had not experienced that with Sam. And up until that point, 73 00:05:05.519 --> 00:05:07.160 you know, Samy and I did everything together. You know, 74 00:05:07.439 --> 00:05:10.680 we were constantly playing and doing things and reading, and 75 00:05:11.399 --> 00:05:14.959 I was not available because I was not feeling well. 76 00:05:15.439 --> 00:05:18.839 And we slowly started to notice that he was changing. 77 00:05:19.839 --> 00:05:23.000 So what we realize now is that a lot of 78 00:05:23.040 --> 00:05:27.040 the language development that he had was echolalia yea and 79 00:05:27.160 --> 00:05:30.480 it was a repetition of words, but not necessarily assigning meaning. 80 00:05:30.519 --> 00:05:32.639 Now that's difficult to kind of parse out if you're 81 00:05:32.680 --> 00:05:36.160 not well versed in that when they're younger, but kind 82 00:05:36.160 --> 00:05:38.600 of saw that, but he really kind of just slipped back. 83 00:05:38.639 --> 00:05:40.800 We saw more kind of stimming. We didn't know it 84 00:05:40.800 --> 00:05:44.600 was stimming then just kind of vocal stems, and he 85 00:05:44.759 --> 00:05:48.199 stopped looking at us, he stopped responding to his name, 86 00:05:49.360 --> 00:05:53.680 and his speech really became scripting, so lines from a show, 87 00:05:53.920 --> 00:05:57.160 and you know, we were just noticing a difference. I think, 88 00:05:57.399 --> 00:05:59.639 you know, the moment that kind of really sticks out 89 00:05:59.639 --> 00:06:02.800 in my mind mind is too. Really, we had kind 90 00:06:02.839 --> 00:06:05.079 of back to back vacations. We were in Long Island 91 00:06:05.120 --> 00:06:07.199 with my family when I was there with my sister 92 00:06:08.120 --> 00:06:11.839 and he was vocally stimming, and she's like, Kelly, have 93 00:06:11.959 --> 00:06:15.040 you noticed Sam makes that noise a lot, you know, 94 00:06:15.120 --> 00:06:18.000 kind of try to prompt me. I was like, oh, 95 00:06:18.040 --> 00:06:20.879 that's just his fire engine noise, right, But then I 96 00:06:20.879 --> 00:06:23.040 started paying attention. I was like, hmm, you know, being 97 00:06:23.040 --> 00:06:27.399 an educator and Vince who were neurodiversion in my classes, 98 00:06:27.399 --> 00:06:29.560 where I was like okay. And then right after that, 99 00:06:29.600 --> 00:06:31.680 we flew out to South Dakota to see my dad 100 00:06:31.720 --> 00:06:35.439 and my stepmom, and what I realized is I was 101 00:06:35.439 --> 00:06:39.560 speaking for him. So my stepmother would ask him a question, 102 00:06:40.439 --> 00:06:42.879 or my father would ask him a question, and I 103 00:06:43.000 --> 00:06:46.240 was answering for him. He wasn't answering, he wasn't responding, 104 00:06:46.839 --> 00:06:50.040 and so it was one of those things where we 105 00:06:50.079 --> 00:06:54.480 were like, hmm, something's going on, and so we spoke 106 00:06:54.519 --> 00:06:59.040 to our pediatrician and obviously had birth to three come in. Now, 107 00:06:59.160 --> 00:07:04.000 I think our of that lapse was typically around two 108 00:07:04.040 --> 00:07:07.079 is when they start to take out that developmental checklist. Well, 109 00:07:07.160 --> 00:07:10.600 my doctor had a baby the same time as like 110 00:07:10.680 --> 00:07:12.240 that kind of was going so we kind of a 111 00:07:12.279 --> 00:07:15.199 fill in and the doctor rushed through it. Oh no, 112 00:07:15.279 --> 00:07:16.839 he's fine, literally said to me, Oh, you don't have 113 00:07:16.839 --> 00:07:19.000 to worry, he doesn't have autism, and kind of moved on. 114 00:07:19.279 --> 00:07:21.959 And that kind of was always stuck with me. I'll 115 00:07:21.959 --> 00:07:27.120 come back to that later. But we knew that something 116 00:07:27.199 --> 00:07:29.439 was going on, we just didn't know what, and so 117 00:07:30.160 --> 00:07:32.680 went through the birth to three process. We had, you know, 118 00:07:33.040 --> 00:07:36.240 evaluators come into our house, and what I will was 119 00:07:38.319 --> 00:07:43.759 hard was how impersonal that was. So having people come 120 00:07:43.800 --> 00:07:46.639 in and you know, try to get him to do 121 00:07:46.720 --> 00:07:49.920 things and asking us questions, but like talking to each 122 00:07:49.920 --> 00:07:51.040 other like we weren't in the room. 123 00:07:51.959 --> 00:07:54.959 Oh that's weird, isn't that isn't that? 124 00:07:55.720 --> 00:07:56.959 Well, what's really odd. 125 00:07:56.800 --> 00:07:59.600 Is that was my very first job out of college. Yes, 126 00:08:00.199 --> 00:08:04.160 I did birth to three and that's not how. 127 00:08:04.040 --> 00:08:07.959 I operated, but that's probably would imagine not knowing not so, 128 00:08:08.079 --> 00:08:09.600 but it was one of those things where I was like, 129 00:08:09.600 --> 00:08:13.519 we're here and so's he. So that kind of from 130 00:08:13.759 --> 00:08:16.160 from then. We can speak more about advcacy later, but 131 00:08:16.199 --> 00:08:17.720 that really kind of started for me where I was like, 132 00:08:17.759 --> 00:08:20.800 we're right here, and you know, when they gave and 133 00:08:20.879 --> 00:08:24.360 told us like, yes, your son has autism, I think 134 00:08:24.399 --> 00:08:26.439 they expected me to kind of fall to pieces in 135 00:08:26.480 --> 00:08:29.720 that moment. Yep, there was kind of like the everybody 136 00:08:29.839 --> 00:08:32.120 was bracing themselves and I just went, okay, so what 137 00:08:32.120 --> 00:08:35.200 do we do next? Right, Like it's it's one of 138 00:08:35.240 --> 00:08:39.559 those things where you know something's going on. You know 139 00:08:39.679 --> 00:08:44.799 your child needs more support than you're currently able to provide, 140 00:08:45.000 --> 00:08:47.679 and now you know how to help them better. So 141 00:08:48.000 --> 00:08:51.879 he's not any different. It's the same wonderful, beautiful child 142 00:08:52.399 --> 00:08:54.159 that I have the privilege of being a parent to, 143 00:08:54.360 --> 00:08:56.919 but now I know what he needs and how to 144 00:08:56.919 --> 00:09:00.440 help him. And so within the context of that, I 145 00:09:00.480 --> 00:09:02.759 went to school, of course, five months pregnant, talked to 146 00:09:02.799 --> 00:09:05.679 my assistant principal, my principal who I dore, and you know, 147 00:09:05.720 --> 00:09:07.440 it was a blubbery mass because I was hormonal, like, 148 00:09:07.480 --> 00:09:10.279 I don't know what to do. And my assistant principal said, listen, 149 00:09:10.480 --> 00:09:14.399 I have two nephews. They have autism. Early intervention is 150 00:09:14.440 --> 00:09:16.679 the key. Here are the things you can do. I 151 00:09:16.720 --> 00:09:18.960 talked to our special educators at our school who were 152 00:09:18.960 --> 00:09:21.200 phenomenal and kind of could lead way. I called you 153 00:09:22.399 --> 00:09:23.960 and I got in contact with you and kind of 154 00:09:23.960 --> 00:09:26.480 like so it was reaching out to those resources that 155 00:09:26.519 --> 00:09:30.320 I knew I had, because at that point there really 156 00:09:30.679 --> 00:09:34.120 wasn't a network for me to reach out to and 157 00:09:34.159 --> 00:09:36.159 go what do I do? How do I how do 158 00:09:36.200 --> 00:09:38.799 I like, where do I even start? You know, what 159 00:09:38.960 --> 00:09:42.120 team does he need? What what do we need to do? 160 00:09:42.279 --> 00:09:46.000 And so that really started the journey of figuring out 161 00:09:46.039 --> 00:09:49.879 more about what does it mean to have autism? What 162 00:09:50.639 --> 00:09:54.440 does the intervention look like? How do I start to 163 00:09:54.440 --> 00:09:56.879 help my child? Because you know, through the research figured 164 00:09:56.879 --> 00:10:00.440 out that yes, you can do something, you can help 165 00:10:00.799 --> 00:10:03.559 and so you know, my husband and I just said, oh, 166 00:10:03.600 --> 00:10:06.480 we're going to be Sammy's champions and we're going to 167 00:10:06.559 --> 00:10:08.480 do everything. We're not just going to do something, We're 168 00:10:08.519 --> 00:10:11.200 going to do everything within our power, and we're going 169 00:10:11.240 --> 00:10:13.039 to be a team and we're going to figure it out. 170 00:10:14.159 --> 00:10:18.320 What I will tell you, though, is that what makes 171 00:10:18.360 --> 00:10:23.320 it so difficult is other people, truly, and I've talked 172 00:10:23.360 --> 00:10:27.200 with other parents, you know, having a child with a disability, 173 00:10:27.240 --> 00:10:30.120 and I still don't like that word very much. Different ability. 174 00:10:30.480 --> 00:10:33.679 It can be very isolating. You know. You get like 175 00:10:33.799 --> 00:10:36.279 the pity invites to the birthday parties but not played it. 176 00:10:36.320 --> 00:10:40.919 So you get, you know, kind of the posture that's 177 00:10:41.000 --> 00:10:43.039 like this, and I don't really know like that, you know, 178 00:10:43.159 --> 00:10:45.639 it's there's not a lot of curiosity, there's a lot 179 00:10:45.679 --> 00:10:51.000 of avoidance, and that can be very isolating because if 180 00:10:51.039 --> 00:10:56.039 you don't have a child who isn't developing typically, you 181 00:10:56.120 --> 00:10:59.279 don't understand what that looks like every day, you know. 182 00:10:59.279 --> 00:11:01.759 And I can even see that difference with my other two. 183 00:11:01.840 --> 00:11:05.360 But we really started then, you know, we read a 184 00:11:05.360 --> 00:11:08.440 book An Early Start for Your Child with Autism that 185 00:11:08.480 --> 00:11:11.240 really helped us kind of get into his world and 186 00:11:11.279 --> 00:11:14.879 figure things out. We put together and started looking for 187 00:11:15.559 --> 00:11:22.399 ABA providers that we felt were affirming to sammy speech therapy, 188 00:11:22.440 --> 00:11:24.840 occupational therapy, and we did aquatic speech there. I mean, 189 00:11:24.879 --> 00:11:29.480 you name it. What is aquatic speech therapy. It's speech 190 00:11:29.519 --> 00:11:36.639 therapy in a pool. Oh okay, So yeah, So Sammy 191 00:11:36.879 --> 00:11:38.879 loved water. That was one of the things even when 192 00:11:38.879 --> 00:11:40.639 he was an infant, if he wasn't able to settle, 193 00:11:40.679 --> 00:11:42.360 I would go turn the shower on. I actually even 194 00:11:42.399 --> 00:11:44.960 had a sound on my phone that was water running, 195 00:11:45.960 --> 00:11:47.639 and so it would help him kind of settle. So, 196 00:11:47.759 --> 00:11:52.639 you know, we we did that, and I mean hours 197 00:11:52.679 --> 00:11:55.720 and hours of work just even in bringing speech back. 198 00:11:55.799 --> 00:11:57.600 We had an app that we worked with them every 199 00:11:57.679 --> 00:11:59.759 day where it would show somebody with an action and 200 00:11:59.759 --> 00:12:01.799 be like like, you know, they'd be walking, what are 201 00:12:01.799 --> 00:12:06.799 they doing? Walking, practicing the intonation or eventually getting to 202 00:12:06.879 --> 00:12:10.960 that you know three words, he is walking and practicing 203 00:12:11.000 --> 00:12:14.639 and doing all those things, and I you know, it 204 00:12:14.720 --> 00:12:19.200 was it was challenging. I think one of the biggest 205 00:12:19.559 --> 00:12:24.320 challenges for him was with sensory. So he had a 206 00:12:24.320 --> 00:12:31.120 lot of auditory sensitivities which made going outside difficult. He 207 00:12:31.360 --> 00:12:34.120 now told us that he can actually hear the wings 208 00:12:34.240 --> 00:12:37.639 flapping on an insect. Like that's how attuned his Yes, 209 00:12:38.240 --> 00:12:41.360 so lawnmowers, leaf blowers, you know, if a plane flew 210 00:12:41.399 --> 00:12:43.519 overhead that he stopped whatever he was doing. Kind of 211 00:12:43.559 --> 00:12:46.480 see that he was really sensitive to that going to 212 00:12:46.600 --> 00:12:49.399 music class once he got to elementary school. Not a 213 00:12:49.440 --> 00:12:52.759 fan yet didn't want to go. And I understand why 214 00:12:53.679 --> 00:12:56.759 eath brushing was an issue, you know. 215 00:12:57.039 --> 00:12:59.120 But I find it interesting though, because he had that 216 00:12:59.240 --> 00:13:05.080 whole attachment to bells yes, which is clearly very auditory. Yes. 217 00:13:05.279 --> 00:13:10.240 So what we did was, in anything, we met him 218 00:13:10.240 --> 00:13:14.559 where he was, we knew where he needed to be. Right. 219 00:13:14.600 --> 00:13:16.639 There's certain areas in which you need to push your 220 00:13:16.720 --> 00:13:20.919 child and you know, work on that generalization, that desensitization 221 00:13:21.440 --> 00:13:23.399 and figure that out. So I'll give you an example. 222 00:13:23.440 --> 00:13:27.919 He hated having his haircut. Not atypical. We actually go 223 00:13:27.960 --> 00:13:31.399 to a barber now in Meriden who specializes in giving 224 00:13:31.440 --> 00:13:35.879 haircuts to children on the spectrum, and so we started 225 00:13:35.919 --> 00:13:39.080 out with like, they have sensory scissors, so there's no buzzer. 226 00:13:39.480 --> 00:13:42.000 And what my husband did is he had him first 227 00:13:42.039 --> 00:13:44.840 start holding his electric raiser to shave his face and 228 00:13:44.879 --> 00:13:46.279 just hold it so we got used to the buzzy 229 00:13:46.320 --> 00:13:49.039 sound and then hold it up to my husband's face 230 00:13:49.759 --> 00:13:53.960 and then help my husband shave his face. And then eventually, 231 00:13:54.120 --> 00:13:57.360 you know, we were able to you know, have him 232 00:13:57.399 --> 00:14:00.159 hold the buzzer, and then eventually I started giving him haircuts, 233 00:14:00.519 --> 00:14:05.720 just a buzz cut, not a barber, and then over 234 00:14:05.799 --> 00:14:07.480 time he's built up to the point where now he 235 00:14:07.519 --> 00:14:09.039 can go to the barber. He has to ask for 236 00:14:09.080 --> 00:14:12.080 breaks and he can do that, but just something simple 237 00:14:12.279 --> 00:14:14.360 that way, where it was like, this is a life skill. 238 00:14:14.399 --> 00:14:16.720 He needs to be able to do that. The only 239 00:14:16.759 --> 00:14:20.200 other area that he really struggled with was eating. He 240 00:14:20.279 --> 00:14:24.639 had pretty limited eating. It got to the point where 241 00:14:24.720 --> 00:14:28.720 he was down to ten foods total that were packaging 242 00:14:28.840 --> 00:14:33.639 brand specific, so if one of them was like this 243 00:14:33.679 --> 00:14:37.960 little like Earth's Best, like peach mango pouch, and they 244 00:14:38.159 --> 00:14:43.159 changed the packaging and he wouldn't need it anymore. So 245 00:14:44.039 --> 00:14:47.600 we had taken him to weekly food therapy to try 246 00:14:47.600 --> 00:14:50.159 to work on that, and we just really weren't seeing 247 00:14:50.200 --> 00:14:55.159 that progress. And our speech therapist recommended an ABA based 248 00:14:55.799 --> 00:14:59.200 intensive food therapy, and I think that that was one 249 00:14:59.240 --> 00:15:02.080 of the hardest things for me as a parent, because 250 00:15:03.440 --> 00:15:06.840 what that entailed was it was five days and you 251 00:15:07.080 --> 00:15:10.480 had a food specialist that came to our home. We 252 00:15:10.559 --> 00:15:14.759 had three meals a day, no snacking, no gluten, no 253 00:15:14.879 --> 00:15:19.360 dairy because they're inflammatory, and it was every single meal 254 00:15:19.480 --> 00:15:23.440 had to be different, so it had to be a fruit, 255 00:15:23.960 --> 00:15:27.000 a vegetable, a starch, and some sort of protein, but 256 00:15:27.039 --> 00:15:29.840 it couldn't be prepared the same and it was different 257 00:15:29.919 --> 00:15:33.879 for every single meal for every single day until the 258 00:15:33.960 --> 00:15:36.759 last day when you had a celebration meal of the 259 00:15:36.759 --> 00:15:39.679 things that he tried that he liked, and that was 260 00:15:39.759 --> 00:15:42.600 kind of there. What was difficult about that was if 261 00:15:42.600 --> 00:15:45.960 he didn't eat, he had to wait for the next meal. 262 00:15:46.360 --> 00:15:53.120 And I really really struggled with that because it's that 263 00:15:53.360 --> 00:15:57.399 knowing it's what's best for him, and is this what's 264 00:15:57.480 --> 00:16:00.759 right and going through all of that it was difficult, 265 00:16:01.200 --> 00:16:03.279 but also knowing that I didn't want my son to 266 00:16:03.360 --> 00:16:04.759 end up on a feeding tube, and that was the 267 00:16:04.799 --> 00:16:08.279 direction that we were headed in. And our food specialist 268 00:16:08.440 --> 00:16:11.000 was awesome, Miss Jodie. She actually ended up working with 269 00:16:11.039 --> 00:16:15.320 us after one of our regular ABA therapists, and you know, 270 00:16:15.399 --> 00:16:17.559 within the context of that, he did the food chaining, 271 00:16:17.639 --> 00:16:20.279 so touching it to his lips, you know, smelling it, 272 00:16:20.320 --> 00:16:22.200 putting in his mouth, chewing, We went through the whole thing. 273 00:16:22.240 --> 00:16:24.320 I think he actually progressed faster because he had done 274 00:16:24.480 --> 00:16:27.159 food therapy prior, but by the end of the week, 275 00:16:27.679 --> 00:16:30.600 he was eating all the food groups and he had 276 00:16:30.639 --> 00:16:35.679 never eaten meat and was eating meat, and now I 277 00:16:35.799 --> 00:16:40.279 can't feed the child. I think he grew like three 278 00:16:40.320 --> 00:16:44.960 inches in two months, so he was finally getting the 279 00:16:45.000 --> 00:16:48.039 things that he needs. So it's those moments of is 280 00:16:48.080 --> 00:16:53.320 this what's right and sometimes really having to center yourself 281 00:16:53.320 --> 00:16:55.399 and I know what, this is what's best for my child, 282 00:16:55.559 --> 00:16:58.000 and he's going to get there and kind of go. 283 00:16:59.080 --> 00:17:00.600 And it was fun days. 284 00:17:00.879 --> 00:17:04.400 It wasn't like five weeks, you know, I think since 285 00:17:04.400 --> 00:17:08.319 it was a condensed period of time. Quite honestly, no 286 00:17:08.319 --> 00:17:10.720 one has died from not eating for five days, even 287 00:17:10.759 --> 00:17:14.480 if he had completely refused everything. But I know many 288 00:17:14.519 --> 00:17:17.240 of the individuals that I've worked with on the autism 289 00:17:17.319 --> 00:17:22.920 spectrum had such limited foods that they were literally there 290 00:17:22.960 --> 00:17:26.359 was no there was no nutrition. I had one kiddo. 291 00:17:26.400 --> 00:17:28.880 At one point we used to joke that he had 292 00:17:28.880 --> 00:17:31.359 a white diet. He only ate food that was white. 293 00:17:31.400 --> 00:17:33.960 He ate rice, he ate noodles, he ate vanilla yogurt, 294 00:17:34.039 --> 00:17:38.279 and ate bagels and marshmallows. I think that was it, 295 00:17:38.799 --> 00:17:40.079 And I mean we had to teach him how to 296 00:17:40.079 --> 00:17:42.119 eat other stuff. We figured out he liked chocolate milk. 297 00:17:42.559 --> 00:17:45.240 So good man, he took a bite of one kind 298 00:17:45.279 --> 00:17:47.240 of food that he didn't particularly like, we got a 299 00:17:47.240 --> 00:17:49.119 sip of chocolate milk, and then we finally got him 300 00:17:49.119 --> 00:17:51.039 to eat other things. I don't think he ever really 301 00:17:51.119 --> 00:17:52.599 liked any of those other things, but he ate it 302 00:17:52.599 --> 00:17:54.799 for chocolate milk. So at least he had a better 303 00:17:55.680 --> 00:17:59.240 diet time for a ton. But you know, it's hard 304 00:17:59.279 --> 00:18:03.200 to watch and you know, to feel like, oh well 305 00:18:03.359 --> 00:18:06.240 that's not you don't like this, but you know, for 306 00:18:06.400 --> 00:18:10.000 health reasons in the long term, it's really important, you know. 307 00:18:10.039 --> 00:18:12.680 So if he decides that you know, he doesn't like 308 00:18:12.799 --> 00:18:16.599 broccoli but hilly green beans, then that we can go 309 00:18:16.680 --> 00:18:16.880 with that. 310 00:18:17.279 --> 00:18:21.839 Yeah, so now we have you know, many fruits, all vegetable, 311 00:18:21.960 --> 00:18:24.279 hilly carrots, you know, a bunch of reads and know 312 00:18:24.319 --> 00:18:26.759 everything with ketchup. I think we should have bought stock 313 00:18:26.880 --> 00:18:29.319 and ketchup. That's his favorite thing. But it's just like, 314 00:18:30.200 --> 00:18:32.880 you know, it's it's one of those things where you 315 00:18:32.920 --> 00:18:35.640 know when you're operating from a place of empathy and 316 00:18:35.720 --> 00:18:38.680 understanding but also knowing what's best for your child. I 317 00:18:38.720 --> 00:18:45.559 think that it's very easy to over accommodate because you 318 00:18:45.599 --> 00:18:48.599 know you're coming from a kind of an over protective place. 319 00:18:48.640 --> 00:18:51.359 And you know, I've said to my husband over and over, like, 320 00:18:51.680 --> 00:18:54.720 we cannot operate from a place of pity. When you 321 00:18:54.759 --> 00:18:58.480 pity someone, you're treating them as if they're less, and 322 00:18:58.519 --> 00:19:02.680 you make poor decisions. And I know he I believe 323 00:19:02.720 --> 00:19:06.599 in my son. You know, he's an amazing person, and 324 00:19:06.640 --> 00:19:08.839 we need to operate from a place of it's not 325 00:19:09.720 --> 00:19:11.359 can he, it's when will he? And how do we 326 00:19:11.400 --> 00:19:13.079 get him there? Yeah? 327 00:19:13.119 --> 00:19:15.960 And you know, giving him the chance to do a 328 00:19:16.079 --> 00:19:18.039 variety of things. So there may turn out to be 329 00:19:18.079 --> 00:19:21.440 things that he really doesn't like or doesn't do, but 330 00:19:21.640 --> 00:19:25.440 he's had the opportunity to learn those things. I do 331 00:19:25.519 --> 00:19:28.640 think I'm kind of wondering too though, whether growing up 332 00:19:28.759 --> 00:19:31.079 with a brother who had disabilities, who was pretty much 333 00:19:31.079 --> 00:19:34.839 expected to carry his own weight, so to speak, that 334 00:19:35.000 --> 00:19:38.519 you saw that and you saw how he thrived, so 335 00:19:39.000 --> 00:19:41.119 not coddling him. 336 00:19:40.920 --> 00:19:42.839 Yeah, that was you know, that is something that was 337 00:19:43.039 --> 00:19:46.720 huge in our house. And my brother's needs a very 338 00:19:46.720 --> 00:19:51.240 complex and it was if you're going to do what 339 00:19:51.279 --> 00:19:55.519 everybody else does because you can, And also just that 340 00:19:56.160 --> 00:19:57.680 why wouldn't we presume competence? 341 00:19:58.319 --> 00:19:58.519 Right? 342 00:19:58.960 --> 00:20:02.839 It's presum douming that you can do this, being curious 343 00:20:03.880 --> 00:20:06.599 if you're struggling, and then how do we help support 344 00:20:06.640 --> 00:20:08.799 you within the context of this and break that down 345 00:20:08.799 --> 00:20:12.000 to meet where you're at and move you forward. So absolutely, 346 00:20:12.400 --> 00:20:14.200 you know, it was always even as strange as me 347 00:20:14.240 --> 00:20:17.160 as a child because my brother Travis was one year 348 00:20:17.160 --> 00:20:19.720 and nine days younger than me, so we really very 349 00:20:19.799 --> 00:20:24.000 much grew up together, and I was always kind of 350 00:20:24.079 --> 00:20:27.480 perplexed initially about why people were treating him differently, like 351 00:20:27.640 --> 00:20:30.640 that's just my brother, Like what's the big deal? And 352 00:20:31.160 --> 00:20:33.160 my middle son is very much like that with Sammy, 353 00:20:33.200 --> 00:20:37.279 you know, he's about three years younger, and also being 354 00:20:37.319 --> 00:20:40.920 a staunch advocate when people were not kind. That was 355 00:20:40.960 --> 00:20:42.880 something that I grew up with too, like no, and 356 00:20:43.359 --> 00:20:48.079 knowing also how cruel people can be. I can remember 357 00:20:48.200 --> 00:20:51.279 very distinctly that he was really strong when he was younger, 358 00:20:51.279 --> 00:20:54.079 and he was doing pull ups in gym class and 359 00:20:54.359 --> 00:20:56.359 he was doing more pull ups than one of the 360 00:20:56.359 --> 00:21:00.680 boys who consistently picked on him, and he actually pulled 361 00:21:00.680 --> 00:21:02.759 my brother off the pull up bar because he didn't 362 00:21:02.759 --> 00:21:04.880 want him to be able to do more than he did. 363 00:21:04.880 --> 00:21:08.000 And I remember that and just feeling very angry. And 364 00:21:08.039 --> 00:21:14.200 I think that it's really easy, especially early on in 365 00:21:14.200 --> 00:21:18.119 this process, to operate from that place of reactivity, of protection, 366 00:21:18.559 --> 00:21:22.960 of wanting, you know, to almost just you know, wrap 367 00:21:23.000 --> 00:21:24.559 them and bubble wrap from the world. You know. I 368 00:21:24.640 --> 00:21:27.720 just I remember, you know, when he first was diagnosed, 369 00:21:27.759 --> 00:21:30.519 and I've talked to other people with children's disabilities find 370 00:21:30.519 --> 00:21:34.839 a similar experience. You have this completely irrational thought of like, Okay, 371 00:21:34.839 --> 00:21:37.000 I'm just going to move to middle of the woods, right, 372 00:21:37.240 --> 00:21:39.960 Like I'm going to protect them. Nobody's ever going to 373 00:21:40.079 --> 00:21:43.039 hurt them, and we'll just live off the grid, like 374 00:21:43.079 --> 00:21:45.960 I give it a barber passed up and do all 375 00:21:46.000 --> 00:21:48.480 of those things. And that's just not reality. You know. 376 00:21:48.559 --> 00:21:52.200 You have to accept the fact that although things are improving, 377 00:21:53.920 --> 00:21:56.200 you are very much raising your child in a world 378 00:21:56.599 --> 00:22:00.000 that is not made for them, and it's only beginning 379 00:22:00.200 --> 00:22:04.000 to attempt to start to understand them, and that someday 380 00:22:05.000 --> 00:22:08.400 they're going to have to be in this world without you. Yeah, 381 00:22:08.759 --> 00:22:13.000 and what is that going to look like for them? Yeah? 382 00:22:13.039 --> 00:22:15.319 And I mean you want them to get to the 383 00:22:15.680 --> 00:22:17.920 to be the very best that that they can be, 384 00:22:18.079 --> 00:22:20.799 to have the life that that they want to. 385 00:22:20.799 --> 00:22:24.920 Have, you know, hopefully you know, a career or a. 386 00:22:24.960 --> 00:22:28.960 Job that is satisfying in the you know, as independent 387 00:22:29.000 --> 00:22:32.759 of a life as as possible, you know. But I 388 00:22:32.799 --> 00:22:36.839 think you you are a staunch advocate. I think you 389 00:22:37.039 --> 00:22:40.519 were even you know, before Sam was born, for the 390 00:22:40.559 --> 00:22:44.799 students in your in your school. You've always been very 391 00:22:44.920 --> 00:22:49.680 attuned with the students who learned differently and found ways 392 00:22:49.720 --> 00:22:53.079 to reach them that I think other people perhaps might 393 00:22:53.079 --> 00:22:55.839 have given up on. So tell me what do you 394 00:22:55.920 --> 00:23:01.119 think is Samy's contextual strength? But is what area does 395 00:23:01.160 --> 00:23:02.200 he really excel in? 396 00:23:02.920 --> 00:23:12.000 So he is incredibly creative and empathetic, and so we 397 00:23:12.039 --> 00:23:15.279 always operate from a strengths perspective. And I operate the 398 00:23:15.279 --> 00:23:16.799 same way with my students at school I did in 399 00:23:16.799 --> 00:23:19.799 my classroom I do now as the dean and advocating 400 00:23:19.799 --> 00:23:25.559 for students. And it sound Sam has perfect pitch. He 401 00:23:25.799 --> 00:23:28.480