WEBVTT 00:00:26.960 --> 00:00:28.828 One. Hello, 00:00:28.828 --> 00:00:33.033 I'm assembly member Joanne Simon from Brooklyn's 52nd Assembly District, 00:00:33.333 --> 00:00:36.202 and I'm really excited to be speaking with you today. 00:00:36.202 --> 00:00:41.374 Today is the 10th anniversary of Dyslexia Advocacy Day here at the Capitol. 00:00:41.775 --> 00:00:45.412 This is a day that we started celebrating ten years ago. 00:00:46.046 --> 00:00:48.648 When we called it Dyslexia Awareness Day. 00:00:48.648 --> 00:00:50.216 And that's because really, 00:00:50.216 --> 00:00:53.620 nobody had been talking about dyslexia in the state Capitol ever. 00:00:54.120 --> 00:00:55.355 Now that's changed. 00:00:55.355 --> 00:00:59.692 And we have so many more people who are talking about dyslexia 00:00:59.692 --> 00:01:03.430 and literacy and the teaching of reading here in Albany. 00:01:03.696 --> 00:01:06.699 And I'm joined today by two special guests. 00:01:06.766 --> 00:01:09.769 The first one is Doctor Claire McHugh. 00:01:10.703 --> 00:01:12.138 It's a little joke there. 00:01:12.138 --> 00:01:15.141 And her daughter, Loretta Gela, and, 00:01:15.842 --> 00:01:19.512 they have come to Dyslexia Advocacy Day now for five years. 00:01:19.546 --> 00:01:21.014 Is that right? 00:01:21.014 --> 00:01:24.451 And they're going to tell us a little bit about why they're here today, 00:01:24.717 --> 00:01:27.720 what this means to them, and what we need to do 00:01:27.720 --> 00:01:31.524 in the future to help improve literacy in New York State. 00:01:31.791 --> 00:01:34.527 So, doctor McHugh. 00:01:34.527 --> 00:01:35.762 So good to be here. 00:01:35.762 --> 00:01:36.396 Thank thank you. 00:01:36.396 --> 00:01:38.131 It's wonderful to have you here. 00:01:38.131 --> 00:01:40.266 It's wonderful to have you here as well. 00:01:40.266 --> 00:01:43.503 So tell me, you told me just now that you've been here five years. 00:01:43.503 --> 00:01:44.704 Five years. 00:01:44.704 --> 00:01:47.807 What brought you to describe IPE Awareness Day in the first place? 00:01:47.841 --> 00:01:50.009 And what has brought you back every year since? 00:01:50.009 --> 00:01:54.881 So five years ago, roughly, we were in the middle of trying 00:01:54.881 --> 00:01:57.517 to sort out some of our learning challenges, 00:01:57.517 --> 00:02:00.253 and we didn't really understand what was going on. 00:02:00.253 --> 00:02:06.025 It was also, around the time of Covid, and we were trying to assess her 00:02:06.025 --> 00:02:09.596 through evaluations, get to know exactly what we're dealing with. 00:02:10.063 --> 00:02:14.300 And when we were looking at resources and looking at ways 00:02:14.300 --> 00:02:16.803 that we could get connected to other parents 00:02:16.803 --> 00:02:19.339 and other people who are experts in the field. 00:02:19.339 --> 00:02:21.541 We knew that this was the place to come. 00:02:21.541 --> 00:02:26.813 And so five years ago, we came for the first time, and actually, 00:02:26.813 --> 00:02:32.352 I believe it was online at that point, and we were connected immediately 00:02:32.352 --> 00:02:34.988 to other people that were trying to sort out 00:02:34.988 --> 00:02:38.358 some of the same challenges that we were, that they knew 00:02:38.358 --> 00:02:42.162 their child was incredibly bright and intelligent like Laura is, 00:02:42.362 --> 00:02:46.499 but had some struggles with school, and we needed to locate 00:02:46.499 --> 00:02:49.502 exactly where the struggles were and what was the origin. 00:02:49.802 --> 00:02:54.407 So dyslexia was one of the things that someone mentioned might be an issue. 00:02:54.741 --> 00:02:59.979 And what we learned was that the teachers that Laura was working with at the time 00:03:00.180 --> 00:03:03.449 knew something was was a little different with her learning, 00:03:03.449 --> 00:03:06.753 but also didn't have the skill set to assess that 00:03:06.753 --> 00:03:10.089 and really wanted us to go out and get an evaluation. 00:03:10.490 --> 00:03:14.260 So what we learned here was not just, you know, 00:03:14.260 --> 00:03:18.765 getting connected to other parents, but hearing where their stories took them. 00:03:18.765 --> 00:03:21.234 And it was an amazing way to network. 00:03:21.234 --> 00:03:25.638 We learned what neuro psych evaluations we should go to, 00:03:25.772 --> 00:03:27.807 how to handle some of the systems 00:03:27.807 --> 00:03:31.110 that we were now a part of that were really, really overwhelming. 00:03:31.578 --> 00:03:34.247 And, science support. 00:03:34.247 --> 00:03:36.683 So that's what originally brought us here. 00:03:36.683 --> 00:03:40.053 And just having that kind of reception 00:03:40.053 --> 00:03:45.058 and that welcome into an area that is not really spoken that much. 00:03:45.058 --> 00:03:47.594 We didn't really know anybody with dyslexia. 00:03:47.594 --> 00:03:49.429 We didn't really know a lot of people 00:03:49.429 --> 00:03:52.532 that had to navigate the systems that we were now facing. 00:03:52.765 --> 00:03:56.102 And so this gave us the space to not only meet those people, 00:03:56.102 --> 00:04:01.140 but to also stay in touch and see how can we be part of this process of 00:04:01.140 --> 00:04:04.844 not just learning, but making some changes because it was really clear 00:04:05.178 --> 00:04:08.715 that a lot of people didn't know what to do with Laura. 00:04:09.148 --> 00:04:12.151 Well, you know, so the first one was online 00:04:12.352 --> 00:04:15.054 with the, the one we did the year before. 00:04:15.054 --> 00:04:19.826 That in 2020 was in March, the week before we shut down. 00:04:20.493 --> 00:04:23.096 So we just got in under the wire. 00:04:23.096 --> 00:04:25.398 So, you know, 00:04:25.398 --> 00:04:29.035 one of the things I want to just, you know, sort of follow up on, 00:04:29.535 --> 00:04:32.338 you know, I want to talk to somebody who's a former member of Congress 00:04:32.338 --> 00:04:34.974 with dyslexia and his family, and he once said to me, 00:04:34.974 --> 00:04:37.977 you know, dyslexia is a little bit like alcoholism in the family. 00:04:38.177 --> 00:04:39.612 Nobody talks about it. 00:04:39.612 --> 00:04:44.617 We all know something's going on, but, nobody knows what to do, right? And, 00:04:45.618 --> 00:04:48.755 and part of that is information and learning from from others. 00:04:48.888 --> 00:04:51.391 So we already you've been here a number of years as well. 00:04:51.391 --> 00:04:54.394 You came when you were a pretty little tyke and, 00:04:55.094 --> 00:04:58.431 so, so tell me, what has this day meant to you? 00:04:59.198 --> 00:05:00.700 Well, 00:05:00.700 --> 00:05:03.770 when I first was diagnosed with dyslexia, 00:05:04.003 --> 00:05:08.641 I didn't know anybody who had it or anyone knew they had dyslexia. 00:05:09.175 --> 00:05:13.613 And my mom, I had my mom had all these books, 00:05:13.613 --> 00:05:17.016 and she was teaching me about what dyslexia was. 00:05:17.250 --> 00:05:19.719 And I was also diagnosed with ADHD. 00:05:19.719 --> 00:05:21.988 And she's teaching me about both of those. 00:05:21.988 --> 00:05:24.324 And my first, 00:05:24.324 --> 00:05:27.327 came this like Theo and Stay. 00:05:27.527 --> 00:05:30.797 It was really fun to meet kids that had dyslexia 00:05:31.197 --> 00:05:35.702 and we just kept coming back and it was really fun. And, 00:05:37.136 --> 00:05:39.505 my first book, I was a little nervous, 00:05:39.505 --> 00:05:42.508 but as you keep going and, just as I was. 00:05:43.409 --> 00:05:46.412 Well, that's great, because I know it's really important. 00:05:46.546 --> 00:05:48.948 And so many young people have said to us, 00:05:48.948 --> 00:05:52.552 they got to meet other kids with dyslexia, and they didn't feel alone anymore. 00:05:52.985 --> 00:05:55.722 You feel alone before that? 00:05:55.722 --> 00:05:56.923 Yeah. Yeah. 00:05:56.923 --> 00:06:01.294 So you've done a great job writing about your dyslexia and reading your excitement. 00:06:01.461 --> 00:06:03.930 You did that today as well during the rally. 00:06:03.930 --> 00:06:07.233 How did that feel for you and what did you do to prepare. 00:06:07.533 --> 00:06:10.536 Well when we prepare, my mom, 00:06:11.671 --> 00:06:15.842 my mom, my dad and my two dogs, well, they'll sit on the couch 00:06:16.109 --> 00:06:19.579 and I'll have this table, and I'll read off the speech. 00:06:20.012 --> 00:06:23.616 I had these pictures of it, and I was practicing it off my iPad, 00:06:23.983 --> 00:06:25.151 and I read it on paper. 00:06:25.151 --> 00:06:27.420 I read pictures of my dogs at the bottom. 00:06:27.420 --> 00:06:28.488 I do that every. 00:06:28.488 --> 00:06:31.591 And I've done that for the past two years that I've done it. 00:06:31.924 --> 00:06:36.696 It's like really fun to see my dog dogs at the bottom of my feet. 00:06:37.063 --> 00:06:39.799 I use those like encouragement and, 00:06:41.734 --> 00:06:44.771 it's like because you like telling people your story, 00:06:44.971 --> 00:06:49.041 but they they might you telling people might also have a similar story to you. 00:06:49.675 --> 00:06:52.512 And like last well, 00:06:52.512 --> 00:06:55.515 two years ago, there's like, 00:06:56.115 --> 00:06:58.618 there are two brothers 00:06:58.618 --> 00:07:01.621 and they were really fun and, 00:07:02.688 --> 00:07:05.558 he like, he kept coming up to speak 00:07:05.558 --> 00:07:08.561 and he loved telling speeches and, 00:07:09.429 --> 00:07:15.268 we parents connected and he, he came last year. 00:07:15.268 --> 00:07:16.202 Li na na na na na. 00:07:16.202 --> 00:07:21.874 And, we like we talked to each other, and he was diagnosed with dyslexia. 00:07:22.175 --> 00:07:25.178 Like, around the time that I was, 00:07:26.712 --> 00:07:27.313 it is 00:07:27.313 --> 00:07:30.316 just pretty fun to meet somebody who's. 00:07:30.316 --> 00:07:31.584 Had the same history. 00:07:31.584 --> 00:07:34.387 Yeah, I didn't know how important that was going to be for her. 00:07:34.387 --> 00:07:37.390 And that became a really, 00:07:37.723 --> 00:07:38.658 clear push. 00:07:38.658 --> 00:07:42.328 What was missing is that she was going through this experience, 00:07:42.328 --> 00:07:45.832 and it was unlike anything that her friends had experienced. 00:07:46.232 --> 00:07:51.070 And so we we saw that she needed to be around other people 00:07:51.070 --> 00:07:56.509 that understood what she was going through and kind of normalize the situation. 00:07:56.843 --> 00:08:01.314 And it wasn't until we started coming here that we realized how prevalent 00:08:01.314 --> 00:08:05.117 this was, like what you were saying, a lot of people don't talk about it. 00:08:05.485 --> 00:08:09.722 I think a lot of people are undiagnosed, and they might not even realize 00:08:09.722 --> 00:08:10.890 that they had it. 00:08:10.890 --> 00:08:14.760 And how important it is for her to to know that there are other children 00:08:14.760 --> 00:08:18.130 that are going through this and that might have not just, 00:08:18.564 --> 00:08:23.369 similar experiences, but just have a deeper understanding 00:08:23.369 --> 00:08:26.939 of what each other's lives must be like as a result of 00:08:27.106 --> 00:08:29.942 some of these different learning challenges. 00:08:29.942 --> 00:08:30.476 Right? 00:08:30.476 --> 00:08:34.113 So, you know, one of the people who came and spoke one year on our panel 00:08:34.113 --> 00:08:35.848 and then later on I interviewed him. 00:08:35.848 --> 00:08:37.750 And his son was a former 00:08:37.750 --> 00:08:41.587 Assembly member, Jack McInerney, who used to represent Albany and, 00:08:43.055 --> 00:08:45.124 he he came and he talked about 00:08:45.124 --> 00:08:48.728 because he was much older, you know, he's 80 probably now. 00:08:49.562 --> 00:08:52.465 And when he was a kid, you know, 00:08:52.465 --> 00:08:55.568 nobody knew anything, but he was very smart, very creative. 00:08:55.801 --> 00:08:58.337 He's a real excellent historian. 00:08:58.337 --> 00:09:01.140 And he ably represented Albany for 20 years. 00:09:01.140 --> 00:09:03.042 And so it was also great for young people 00:09:03.042 --> 00:09:06.045 to see somebody who was an assembly member, 00:09:06.078 --> 00:09:08.781 and or a senator. 00:09:08.781 --> 00:09:11.584 And we've had people come and speak who were dyslexic, 00:09:11.584 --> 00:09:16.255 who were movie producers, who won Academy Awards and actors and whatnot. 00:09:16.923 --> 00:09:19.892 So with that, in that part of it is very important. 00:09:20.026 --> 00:09:23.029 But one of the things that he spoke about, 00:09:23.729 --> 00:09:27.133 was how he finally was diagnosed once his son was. 00:09:28.334 --> 00:09:31.237 So we find very often that it runs in families, 00:09:31.237 --> 00:09:35.241 and it's because the child, it gets diagnosed that the parent realized 00:09:35.508 --> 00:09:40.513 that was my problem when I was a child, and I never knew what it was like. 00:09:40.546 --> 00:09:42.515 I had that experience with her grandmother. 00:09:42.515 --> 00:09:46.986 We call her Nana, who's in her 80s now, and when we were going through 00:09:46.986 --> 00:09:50.823 the neuro psychological evaluation, they were asking for family history. 00:09:50.990 --> 00:09:54.093 So my mother, who was born in the 40s and went to school 00:09:54.093 --> 00:09:57.196 in the 50s, this was never something that they saw. 00:09:57.229 --> 00:10:00.232 They just knew that she had touches with reading. 00:10:00.266 --> 00:10:03.336 And when Laura was going through that process, she would write, 00:10:03.336 --> 00:10:05.605 you would have these conversations with Nana, 00:10:05.605 --> 00:10:09.241 just like I might have this too, and didn't know about it, 00:10:09.475 --> 00:10:12.812 which would make sense because there is such a family history 00:10:12.812 --> 00:10:16.749 and we couldn't locate where that was in our family because so many 00:10:16.749 --> 00:10:19.952 of the previous generations, it was not on anybody's radar. 00:10:19.986 --> 00:10:20.953 That's right. 00:10:20.953 --> 00:10:22.321 So, that's 00:10:22.321 --> 00:10:25.992 that's a great story, but it does confirm that friends and families very often 00:10:26.258 --> 00:10:29.929 and it may not be something anybody realized, you know, and I know with 00:10:30.062 --> 00:10:34.333 I have a brother with dyslexia and, you know, I know it was my uncle, 00:10:35.167 --> 00:10:37.603 and, my niece and nephew both have dyslexia. 00:10:37.603 --> 00:10:39.405 So we know it runs in families. 00:10:39.405 --> 00:10:39.739 Yeah. 00:10:39.739 --> 00:10:40.773 And so, you know, 00:10:40.773 --> 00:10:43.743 one of the things we talked about and we have a few minutes left here, 00:10:44.276 --> 00:10:45.711 and that is what do we need to do? 00:10:45.711 --> 00:10:46.746 I know we've talked 00:10:46.746 --> 00:10:50.583 about professional development for teachers who are currently teaching 00:10:50.883 --> 00:10:53.686 so that more teachers in the classroom understand. 00:10:53.686 --> 00:10:55.187 And now that you're going to, 00:10:56.555 --> 00:10:58.057 to church, our. 00:10:58.057 --> 00:10:59.158 Steven. 00:10:59.158 --> 00:11:02.161 Gaynor, excuse me, I do know that, 00:11:02.762 --> 00:11:04.563 you have teachers who are specially trained. 00:11:04.563 --> 00:11:06.465 That doesn't happen in many public schools. 00:11:06.465 --> 00:11:08.100 And we're trying to change that. 00:11:08.100 --> 00:11:12.438 So as a parent, would you look for, in the public schools, 00:11:12.438 --> 00:11:16.876 what would have helped you when, you recognized that your daughter 00:11:16.876 --> 00:11:20.413 was struggling with reading the teacher but didn't know what it was? 00:11:20.613 --> 00:11:24.350 It would really help if there was more of an understanding of screening, 00:11:24.350 --> 00:11:26.218 which I know that that's something that, 00:11:26.218 --> 00:11:30.122 this community is really working for, but not just for screening. 00:11:30.122 --> 00:11:32.725 But what do you do when someone is screened 00:11:32.725 --> 00:11:35.828 and they're leaning towards a diagnosis of dyslexia? 00:11:35.828 --> 00:11:38.898 Because one of the things that was challenging for us 00:11:38.931 --> 00:11:43.703 when I was in kindergarten is we were told to make more flashcards 00:11:43.703 --> 00:11:47.006 to label things, and we did everything we were guided to do. 00:11:47.373 --> 00:11:50.076 But what we've learned now is that's not really the science 00:11:50.076 --> 00:11:54.380 of how Lee learns, and that's not a way that she was going to decode. 00:11:54.613 --> 00:11:58.684 So we spent a lot of time not beginning when we were sorting things out, 00:11:58.884 --> 00:12:01.153 doing things that were not effective. 00:12:01.153 --> 00:12:05.691 And so I feel like the work that's being done with the path forward 00:12:05.691 --> 00:12:09.495 in training teachers at the college level is essential, 00:12:09.729 --> 00:12:13.933 because her teachers wanted to help and just didn't have the expertise 00:12:13.933 --> 00:12:17.636 and skill set to, and so they thought they were guiding us 00:12:17.670 --> 00:12:20.039 at least to do something that would be productive. 00:12:20.039 --> 00:12:25.144 And it just created more of a situation of Lyra feeling like she was failing. 00:12:25.144 --> 00:12:29.415 Because we did the flashcards, we label the entire apartment, 00:12:29.749 --> 00:12:32.885 and there was no change to her being able 00:12:32.885 --> 00:12:36.155 to connect letters to sounds and break apart. 00:12:36.388 --> 00:12:38.124 One of my teachers told me, 00:12:38.124 --> 00:12:42.128 if they wanted me to read to like, take clues from the pictures. 00:12:42.261 --> 00:12:46.298 I try to guess what the words were right, and I was doing that. 00:12:46.599 --> 00:12:50.269 And I get the complete wrong stories because I didn't understand 00:12:50.269 --> 00:12:52.204 what the pictures were trying to tell me. 00:12:52.204 --> 00:12:53.272 Yeah. 00:12:53.272 --> 00:12:55.574 You know, that is you both raise to two issues. 00:12:55.574 --> 00:12:57.943 One is that whole word, and 00:12:59.044 --> 00:13:01.347 is, is 00:13:01.347 --> 00:13:04.016 really not the way kids process reading. 00:13:04.016 --> 00:13:07.787 And also, that, you were taught to guess. 00:13:08.120 --> 00:13:10.322 And so one of the things that we're trying to do, 00:13:10.322 --> 00:13:12.958 and I know we're doing it to professional development 00:13:12.958 --> 00:13:17.029 and also these days and bringing attention to it, and the path forward is ensure 00:13:17.029 --> 00:13:21.167 that our teachers, when they graduate from a school of education, 00:13:21.167 --> 00:13:24.170 have a toolbox, they have the that skill set, 00:13:24.370 --> 00:13:29.141 but that we also are, able to make sure that they understand how to deliver 00:13:29.175 --> 00:13:33.078 reading instruction and that guessing actually isn't what works. 00:13:33.312 --> 00:13:36.615 What we need to do is break down those words, decode the words, 00:13:36.615 --> 00:13:39.151 and then be able to put them together and read. 00:13:39.151 --> 00:13:42.721 So, we are running out of time very quickly. 00:13:42.721 --> 00:13:45.658 I want to thank you both for joining us here today. 00:13:45.658 --> 00:13:48.227 It's been wonderful to have you back in Albany. 00:13:48.227 --> 00:13:51.063 I hope that you'll come back again next year 00:13:51.063 --> 00:13:54.466 and join us at our next Dyslexia Advocacy Day in Albany. 00:13:54.567 --> 00:13:56.101 Thank you so much. Thank you. 00:14:06.045 --> 00:14:51.690 For. AG. Day.