WEBVTT 00:00:00.000 --> 00:00:02.700 Hi, my name is Jordan. I am a special education 00:00:02.700 --> 00:00:06.160 teacher from the UK. I share my passion for everything 00:00:06.160 --> 00:00:09.119 communication, sensory regulation and fun lesson 00:00:09.119 --> 00:00:11.660 ideas for my classroom of disabled pupils aged 00:00:11.660 --> 00:00:15.300 4 to 11. Each week I am joined by experts in 00:00:15.300 --> 00:00:17.640 the field answering your questions and sharing 00:00:17.640 --> 00:00:19.539 our knowledge and experience working alongside 00:00:19.539 --> 00:00:22.539 our beautiful young people. Let's get started. 00:00:28.519 --> 00:00:31.620 Today, I am honored to be joined by Eleanor from 00:00:31.620 --> 00:00:33.840 Honestly, I Was Speechless. I wanted to do an 00:00:33.840 --> 00:00:36.039 introduction before we start recording together. 00:00:36.299 --> 00:00:39.640 I am so excited for this episode. Eleanor is 00:00:39.640 --> 00:00:43.399 an AAC user. She describes herself as, or her 00:00:43.399 --> 00:00:45.560 communication style, as complex communication. 00:00:46.600 --> 00:00:49.880 And she's been very clear with me on how to conduct 00:00:49.880 --> 00:00:53.119 this conversation so that she can access it and 00:00:53.119 --> 00:00:55.740 it can be accessible to her. We stick to the 00:00:55.740 --> 00:00:57.920 questions that I've asked. She's pre -prepared 00:00:57.920 --> 00:01:01.039 answers on her AAC device. And you'll notice 00:01:01.039 --> 00:01:04.079 that when I go between the sections of questions 00:01:04.079 --> 00:01:06.879 that I say once something has finished. and then 00:01:06.879 --> 00:01:08.879 explain what we're going to talk about next. 00:01:09.099 --> 00:01:11.159 And this is to make it accessible for her. I 00:01:11.159 --> 00:01:13.560 hope that you get a lot out of this conversation. 00:01:13.579 --> 00:01:15.900 I think it's really important that we're including 00:01:15.900 --> 00:01:18.540 the people that we say that we're supporting 00:01:18.540 --> 00:01:21.260 in these conversations. It felt very wrong to 00:01:21.260 --> 00:01:23.780 me that I didn't have an AAC user on my podcast 00:01:23.780 --> 00:01:26.959 where we're talking about AAC so much. So I'm 00:01:26.959 --> 00:01:29.040 so excited that she can join today and I hope 00:01:29.040 --> 00:01:36.640 you get a lot out of this episode. Hello everybody 00:01:36.640 --> 00:01:39.219 and welcome to the Sensory Classroom podcast. 00:01:39.439 --> 00:01:42.819 My name is Jordan and today I'm joined by Eleanor 00:01:42.819 --> 00:01:46.859 from Honestly I Was Speechless. First of all 00:01:46.859 --> 00:01:50.260 we're going to talk about you. So what is your 00:01:50.260 --> 00:02:14.719 name and how old are you? 27. Fantastic. And 00:02:14.719 --> 00:02:29.159 what is your diagnosis or disability? Autism. 00:02:31.539 --> 00:02:44.210 What hobbies do you have? Music. Me too. I love 00:02:44.210 --> 00:02:50.849 music. Music, Taylor Swift. Oh, fantastic. Her 00:02:50.849 --> 00:02:57.229 new album. I bet you're excited about that. Definitely. 00:03:01.069 --> 00:03:13.550 What is your favourite thing to talk about? Lots 00:03:13.550 --> 00:03:18.729 of things. Ah, okay. Are you okay that I talk 00:03:18.729 --> 00:03:26.449 about your communication today? Yes. Great. What 00:03:26.449 --> 00:03:29.930 is difficult for you to do because of your complex 00:03:29.930 --> 00:04:25.079 communication? Talk. Understand. Remember. Shall 00:04:25.079 --> 00:04:28.819 I show you my introduction I made? Yes, please. 00:04:34.319 --> 00:04:39.259 My name is Eleanor and I'm an autistic adult 00:04:39.259 --> 00:04:41.920 from the UK. I need significant support with 00:04:41.920 --> 00:04:45.339 all aspects of my life. I communicate multimodally 00:04:45.339 --> 00:04:47.920 using different types of AAC as well as speech. 00:04:48.680 --> 00:04:51.000 I have been exploring gestalt processing with 00:04:51.000 --> 00:04:53.339 my speech and language therapist and this has 00:04:53.339 --> 00:04:56.199 been nothing short of life -changing. I have 00:04:56.199 --> 00:04:58.560 been making posts with support on Instagram for 00:04:58.560 --> 00:05:01.420 about six months now and I'm enjoying using this 00:05:01.420 --> 00:05:03.579 platform to advocate for higher needs autistic 00:05:03.579 --> 00:05:06.360 people as well as to speak about mental health, 00:05:06.500 --> 00:05:13.160 regulation, AAC and accessibility. And your Instagram 00:05:13.160 --> 00:05:15.600 account is one of my favourites so I'm very grateful 00:05:15.600 --> 00:05:17.139 that you've been doing that. I've been learning 00:05:17.139 --> 00:05:50.810 a lot. Sorry, thank you. So talking about you 00:05:50.810 --> 00:05:53.350 has finished. Now we're going to talk about your 00:05:53.350 --> 00:05:57.750 early experiences. I know you prepared something 00:05:57.750 --> 00:06:00.550 about what it was like to be a child and your 00:06:00.550 --> 00:06:02.870 understanding. Are you okay sharing that with 00:06:02.870 --> 00:06:15.100 us? There is so much I can talk about here. I 00:06:15.100 --> 00:06:17.639 think I want first to bring up the topic of understanding. 00:06:18.279 --> 00:06:20.839 I do believe in presuming every child has the 00:06:20.839 --> 00:06:23.019 potential to learn and that especially those 00:06:23.019 --> 00:06:25.259 without reliable communication may understand 00:06:25.259 --> 00:06:28.519 more than they can express. But when I was little, 00:06:28.639 --> 00:06:31.180 I remember really understanding very little language 00:06:31.180 --> 00:06:34.189 actually, much less than I could say. speech 00:06:34.189 --> 00:06:36.569 was like white noise to me but that doesn't mean 00:06:36.569 --> 00:06:38.629 I didn't understand the spirit of what people 00:06:38.629 --> 00:06:41.129 said and the vibe in a room I knew who liked 00:06:41.129 --> 00:06:43.569 me and who respected me even if I didn't know 00:06:43.569 --> 00:06:49.110 what they were saying yeah I see that in my room 00:06:49.110 --> 00:06:53.310 too some of my children you can tell if they 00:06:53.310 --> 00:06:56.550 feel respected and loved and liked even if they 00:06:56.550 --> 00:07:04.389 can't understand yeah absolutely What else as 00:07:04.389 --> 00:07:07.810 a child? So expressing things. Are you OK sharing 00:07:07.810 --> 00:07:11.529 that with me? The thing that has really stuck 00:07:11.529 --> 00:07:13.550 with me is the sheer frustration of not being 00:07:13.550 --> 00:07:16.509 understood. I was really challenging as a small 00:07:16.509 --> 00:07:19.029 child to the point where one of my earliest memories 00:07:19.029 --> 00:07:21.790 is of education as being restrained by four adults. 00:07:22.189 --> 00:07:25.430 But I was never naughty. I was in physical or 00:07:25.430 --> 00:07:28.370 emotional pain or sensory distress or some other 00:07:28.370 --> 00:07:31.069 thing that I needed help with. It is frustrating 00:07:31.069 --> 00:07:33.389 not to get what you want and need. And deeper 00:07:33.389 --> 00:07:35.490 than that, there is a human need to be truly 00:07:35.490 --> 00:07:38.009 seen and heard, which some adults got right for 00:07:38.009 --> 00:07:40.410 me and others didn't. This has been a theme for 00:07:40.410 --> 00:07:45.329 my whole life, from preschool to now. Yeah, and 00:07:45.329 --> 00:07:49.430 that's why we're here today. Yeah, absolutely. 00:07:51.750 --> 00:07:58.220 What did teachers get wrong? I guess it was different 00:07:58.220 --> 00:08:00.980 back in the 2000s. The biggest negative thing 00:08:00.980 --> 00:08:03.540 was just not getting me and seemingly not making 00:08:03.540 --> 00:08:06.740 the effort. It's about curiosity. I don't want 00:08:06.740 --> 00:08:10.100 to be preachy. I can only speak for myself and 00:08:10.100 --> 00:08:12.279 speak on what I've seen happen to my peers and 00:08:12.279 --> 00:08:14.720 friends. But I do think being curious is the 00:08:14.720 --> 00:08:17.199 best starting point. I think more of my needs 00:08:17.199 --> 00:08:19.519 could have been met quite easily if anyone in 00:08:19.519 --> 00:08:21.360 the room had really thought about my experience 00:08:21.360 --> 00:08:24.259 and what might be going on for me. I had mixed 00:08:24.259 --> 00:08:27.439 experiences in primary school. I did have some 00:08:27.439 --> 00:08:29.920 stuff who prioritised the relationship and leaned 00:08:29.920 --> 00:08:32.360 into it, and tried for me, which was helpful, 00:08:32.580 --> 00:08:35.320 even when they didn't always get it right. I 00:08:35.320 --> 00:08:37.679 spent time in a mainstream secondary school. 00:08:38.220 --> 00:08:41.039 That was genuinely traumatic, to be honest, and 00:08:41.039 --> 00:08:42.899 what stuff got wrong there was leaving it too 00:08:42.899 --> 00:08:46.080 long. By the time anything was done, I had stopped 00:08:46.080 --> 00:08:48.000 eating and stopped communicating altogether. 00:08:48.759 --> 00:08:51.379 It could have been caught sooner. There were 00:08:51.379 --> 00:08:53.820 also missed opportunities to safeguard me from 00:08:53.820 --> 00:08:57.830 harm. Again, a lack of curiosity. The other thing 00:08:57.830 --> 00:09:00.110 I would go back and change if I could is how 00:09:00.110 --> 00:09:02.889 teachers and support staff understand dysregulation, 00:09:03.110 --> 00:09:06.549 dissociation and shutdown. I think shutdown is 00:09:06.549 --> 00:09:08.769 too often overlooked because externally it can 00:09:08.769 --> 00:09:11.370 look like being okay and some staff would benefit 00:09:11.370 --> 00:09:13.409 from learning more about how to support young 00:09:13.409 --> 00:09:15.750 people to upregulate and activate when they need 00:09:15.750 --> 00:09:28.330 to or get curious about the reason. Let's carry 00:09:28.330 --> 00:09:34.649 on. Yes, definitely. I see this too, that stillness 00:09:34.649 --> 00:09:44.990 can mean that somebody is in fright mode. Yeah, 00:09:45.090 --> 00:09:52.450 100%. What was life like and your communication 00:09:52.450 --> 00:10:05.629 like before high -tech AAT? Yep, 100 % so. I 00:10:05.629 --> 00:10:08.090 actually have had pretty poor access to AAC throughout 00:10:08.090 --> 00:10:11.730 my life. I only got my own personal AAC device 00:10:11.730 --> 00:10:15.009 a couple of years ago, in my mid -twenties. Before 00:10:15.009 --> 00:10:18.149 that, I relied on my speech, vocalisation, and 00:10:18.149 --> 00:10:20.350 things like aided language boards and communication 00:10:20.350 --> 00:10:23.070 cards when they were available. Of course, they 00:10:23.070 --> 00:10:25.889 weren't always available. This did unfortunately 00:10:25.889 --> 00:10:28.970 mean that, without access to communication, my 00:10:28.970 --> 00:10:31.350 unmet needs came out in distress for a long time. 00:10:31.970 --> 00:10:34.929 Sometimes, this was very externalised, but I 00:10:34.929 --> 00:10:37.250 also had a long period of being extremely shut 00:10:37.250 --> 00:10:39.809 down, where my behaviour was less loud, but I 00:10:39.809 --> 00:10:43.070 was really suffering. I think, for me, the issue 00:10:43.070 --> 00:10:45.110 isn't the lack of high -tech device necessarily, 00:10:45.409 --> 00:10:49.009 it's that I needed my own personal system. This 00:10:49.009 --> 00:10:51.370 could have been a communication book, for example. 00:10:51.549 --> 00:10:54.330 Otherwise, it's a case of relying on every environment 00:10:54.330 --> 00:10:56.490 you enter to have the right aids. Maybe this 00:10:56.490 --> 00:10:58.919 works within a specialist setting. but not out 00:10:58.919 --> 00:11:01.679 in the world. Also, obviously not every aid works 00:11:01.679 --> 00:11:03.960 for everyone, and not everyone needs the same 00:11:03.960 --> 00:11:06.100 support. Having a place where my communication 00:11:06.100 --> 00:11:08.879 passport is stored, along with a keyboard and 00:11:08.879 --> 00:11:11.159 just about everything I would want to say, is 00:11:11.159 --> 00:11:13.080 what has made a difference. I could have been 00:11:13.080 --> 00:11:15.879 spared a lot of heartache if that had been in 00:11:15.879 --> 00:11:17.919 place earlier, and it would have set me up for 00:11:17.919 --> 00:11:20.039 success with transitioning out of school and 00:11:20.039 --> 00:11:26.580 things like that. Yeah, keeping it personal and 00:11:26.580 --> 00:11:29.139 keeping it available is absolutely essential. 00:11:30.580 --> 00:11:37.120 Yeah, absolutely. What does robust AAC allow? 00:11:39.649 --> 00:11:42.049 Let's start with high -tech specifically, and 00:11:42.049 --> 00:11:43.929 then I would like to talk a little bit about 00:11:43.929 --> 00:11:47.110 RobustAC in general, if that is okay. Some benefits 00:11:47.110 --> 00:11:49.450 of high -tech are the flexibility, the voice 00:11:49.450 --> 00:11:51.789 output function, the ability to have thousands 00:11:51.789 --> 00:11:54.289 of words on a 10 -inch device, and the access 00:11:54.289 --> 00:11:57.090 to all the symbols I might need. I rely on symbols 00:11:57.090 --> 00:11:59.750 a lot, and with AppGrid, which is the app I use, 00:11:59.870 --> 00:12:01.789 it was a matter of hoping someone would help 00:12:01.789 --> 00:12:03.950 me go on the computer and print off the symbols 00:12:03.950 --> 00:12:07.250 I needed. Obviously, that's a massive pain for 00:12:07.250 --> 00:12:09.649 everyone, difficult for me to ask for, and it 00:12:09.649 --> 00:12:12.610 also limits access in the moment. In terms of 00:12:12.610 --> 00:12:15.490 what robust AAC allows, well, again, it has been 00:12:15.490 --> 00:12:18.570 transformative. Prior to this device and meeting 00:12:18.570 --> 00:12:21.429 my current SLT, my communication plan and what 00:12:21.429 --> 00:12:23.789 resources I did have had got lost during a move, 00:12:23.929 --> 00:12:26.129 and I had spent years with very little meaningful 00:12:26.129 --> 00:12:30.879 communication. Yeah, go figure. So for me, having 00:12:30.879 --> 00:12:33.340 the right plan in place now and an aid that can 00:12:33.340 --> 00:12:36.580 do whatever I want it to is incredible. I am 00:12:36.580 --> 00:12:38.799 still working on my independence with it because 00:12:38.799 --> 00:12:41.139 I am still early on in my journey, but I have 00:12:41.139 --> 00:12:56.059 a chance now. Let's carry on. That's fantastic. 00:12:57.019 --> 00:12:59.620 It's so good to hear from your point of view 00:12:59.620 --> 00:13:02.379 the difference that having a robust and personal 00:13:02.379 --> 00:13:30.370 and accessible AAC has been for you. It makes 00:13:30.370 --> 00:13:37.769 so much difference. What are some of the barriers 00:13:37.769 --> 00:13:41.830 that you still face, even with your robust AAC? 00:13:45.129 --> 00:13:47.590 Well, there are a number of things. Some of them 00:13:47.590 --> 00:13:49.870 are to do with my disability themselves, but 00:13:49.870 --> 00:13:52.320 some of the barriers are around my support. funding, 00:13:52.480 --> 00:13:55.200 and my access to opportunity. There is a constant 00:13:55.200 --> 00:13:57.919 battle to not be overestimated, but also not 00:13:57.919 --> 00:14:00.379 underestimated. I have really high support needs, 00:14:00.620 --> 00:14:03.320 yet I am incredibly intelligent in specific ways. 00:14:03.500 --> 00:14:05.580 People struggle with that. I would say another 00:14:05.580 --> 00:14:08.299 barrier is attitudes to disabled people. I am 00:14:08.299 --> 00:14:10.720 worthy of a good life, as are my peers, and I 00:14:10.720 --> 00:14:13.600 wish commissioners, funders, and politicians 00:14:13.600 --> 00:14:16.460 believed that and acted on it. I also face barriers 00:14:16.460 --> 00:14:18.940 to access to healthcare. For me, this is the 00:14:18.940 --> 00:14:22.169 biggest issue. I am statistically much more likely 00:14:22.169 --> 00:14:24.649 than a non -disabled person to die a preventable 00:14:24.649 --> 00:14:27.470 early death, not to be morbid, but my experience 00:14:27.470 --> 00:14:29.789 trying to access healthcare means this doesn't 00:14:29.789 --> 00:14:32.370 surprise me at all. Healthcare professionals 00:14:32.370 --> 00:14:34.710 need to know how to support people with learning 00:14:34.710 --> 00:14:38.190 disability and autism. We also need better access 00:14:38.190 --> 00:14:40.850 to advocacy and more funding for specialist teams. 00:14:41.230 --> 00:14:44.149 At the moment, I literally cannot access my GP. 00:14:44.539 --> 00:14:46.860 but I am moving next month and in the new year 00:14:46.860 --> 00:14:48.740 I will be referred to the learning disability 00:14:48.740 --> 00:14:52.120 healthcare team straight away. Amazing, but what 00:14:52.120 --> 00:14:54.000 about the people who will stay living where I 00:14:54.000 --> 00:14:59.639 am now? You see, it's about access. Yeah, it 00:14:59.639 --> 00:15:08.779 can be a postcode lottery, can't it? Exactly, 00:15:09.059 --> 00:15:16.860 yeah, 100%. There are lots of people listening 00:15:16.860 --> 00:15:19.720 to this that are teachers or parents or people 00:15:19.720 --> 00:15:22.659 that support people with complex communication. 00:15:23.480 --> 00:15:26.179 What would you like people listening to take 00:15:26.179 --> 00:15:31.179 away from this episode? I have a few things. 00:15:31.679 --> 00:15:34.639 Firstly, the obvious things which are prioritising 00:15:34.639 --> 00:15:38.399 safety, dignity, respect and care and love. Actually, 00:15:38.539 --> 00:15:42.340 I think it's OK to call it love. Secondly, presuming 00:15:42.340 --> 00:15:44.600 competence and potential, but knowing it is okay 00:15:44.600 --> 00:15:46.919 if someone doesn't understand or isn't able to 00:15:46.919 --> 00:15:50.360 do something. Thirdly, access to a bus taxi and 00:15:50.360 --> 00:15:53.659 a foolproof communication passport or plan. A 00:15:53.659 --> 00:15:55.940 support worker said to me years ago, there's 00:15:55.940 --> 00:15:58.299 no point working with symbols. Well, she called 00:15:58.299 --> 00:16:00.740 it PECS, but she meant symbols when kids are 00:16:00.740 --> 00:16:03.080 in school because they leave and nobody bothers 00:16:03.080 --> 00:16:05.929 when they're adults. I think something I am really 00:16:05.929 --> 00:16:08.289 keen to do more work around is transitions for 00:16:08.289 --> 00:16:10.730 disabled young adults. My move from school was 00:16:10.730 --> 00:16:12.929 messed up badly, not least because what that 00:16:12.929 --> 00:16:15.789 lady told me was sort of true. So it's setting 00:16:15.789 --> 00:16:17.889 kids up with their own robust systems and their 00:16:17.889 --> 00:16:21.029 own resources and a robust plan as well. And 00:16:21.029 --> 00:16:23.350 finally, I want people to consider the needs 00:16:23.350 --> 00:16:25.490 and interests of people like me as they navigate 00:16:25.490 --> 00:16:28.450 the world. If you are a healthcare worker, you 00:16:28.450 --> 00:16:31.110 need to know about hospital passports, just things 00:16:31.110 --> 00:16:33.409 like that. And please don't listen to people 00:16:33.409 --> 00:16:35.149 who want you to believe that we're not worth 00:16:35.149 --> 00:16:37.330 the money it takes to keep us alive and educated 00:16:37.330 --> 00:16:39.789 and well. Me and my peers deserve good lives 00:16:39.789 --> 00:16:48.190 too. Very much, 100%. I know that lots of people 00:16:48.190 --> 00:16:49.970 listening will be really inspired by what you've 00:16:49.970 --> 00:16:53.259 said today. I really hope so. And I know they'll 00:16:53.259 --> 00:16:55.679 want to find out more about you. Where can people 00:16:55.679 --> 00:17:03.860 find you online? I am on Instagram, but honestly, 00:17:04.019 --> 00:17:10.039 I was speechless. Fantastic. Thank you so much 00:17:10.039 --> 00:17:11.940 for joining me today, Eleanor. Is there anything 00:17:11.940 --> 00:17:13.920 more that you would like to say that we haven't 00:17:13.920 --> 00:17:25.279 covered today? Not right now. Fantastic. Thank 00:17:25.279 --> 00:17:28.539 you so much, Eleanor. And I really, really appreciate 00:17:28.539 --> 00:17:42.880 you sharing today. Thanks so much for having 00:17:42.880 --> 00:17:43.640 me on the podcast.