Transcript
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
0:32
And I’m Lori Saux.
0:34
And today we’re joined by a past guest Vaish and her son Sid. We’ve had
0:39
so many wonderful conversations with Vaish and this is the first time that Sid has been able to join us. Sid is nonspeaking and has a diagnosis of autism, as well as Down syndrome. Sid is a smart, articulate poet, who single handedly debunks so many misperceptions that are put upon our community.
1:03
So welcome Vaish and Sid Sarathy.
1:08
Hi, guys.
1:09
Good morning, friends. How are you today?
1:12
Morning we’re doing well.
1:13
So good to see you. Vaish. And Sid, very nice to meet you.
1:17
I-a-m-s-o-h-a-p-p-y-t-o-b-e-h-e-r-e
I’m so happy to be here.
1:49
We’re so glad to have you.
1:51
Right away. This should be like a video episode.
Yeah. Oh my gosh,
1:55
I think we should just use the video as well. Yes, this is
1:58
good. And you’re recording the video too. Right?
2:01
We are recording the video
2:03
we’re recording the video as well.
So this is your third time on our podcast,
2:08
it probably is.
2:11
To our audio only audience we should let you know that Sid is communicating. What do you call the board that? Is that something you created?
2:19
We call it a letter board. This one’s kind of a stencil kind of letter board series using a pencil to point to each of the letters and spell out his responses.
2:30
Now, is that something that you made?
2:33
Actually a pretty it’s a it’s a standard technique. There’s it’s just it’s called Letter Boarding Communication. There are variations on it. But there’s a technique called RPM Rapid Prompting Method. There’s another one called Spelling To Communicate. So there are a lot of non speaking autistic students or kids, adults, students, everybody that use spelling to communicate in different forms. So they use a letter board to communicate their ideas.
2:58
How long has Sid been using that board?
3:01
I would say we started in 2015. So it’s going to be about eight years it’s taken a set has really struggles with his motor skills. Even more than, you know, typically he would if he just had Down syndrome. He has multiple diagnosis. But so it took a long time for fluency but he could he could communicate with some support for quite early I think when he was eight or nine, he’s he’s going to be 16 this month. So it’s been on there for about eight years.
3:31
What prompted you to use it?
3:33
Communication, right, so I’d heard about it at that. So the technique that we trained on is called RPM, it’s the same thing. So this Rapid Prompting Method is the name of the technique that we use, to train students to use electrical to communicate. And I’d heard about rpm from a few friends of ours, who are parents of autistic children. But it was just like it was in my mind. And then I saw a video somewhere I can’t even recall what it was. But it was this nonspeaking boy who was doing a lesson and a teacher asked him so what animal were we talking about? And he just spelled out there B E AR, and even that for me was like, oh my god, he said a word. He spelled the word because by the time I said couldn’t spell and said couldn’t sign out, he still doesn’t speak. He doesn’t have the fine motor design. He didn’t use to make eye contact and he No gestures right? So there was like, I didn’t have any window into his world. And so everybody around us was talking about significant intellectual delay because there was nothing there’s nothing obvious that you know, okay, he he gets it or anything like that. It was very, it’s to all to anybody who saw said it’s like seeing a person that didn’t understand you at all and, and then I saw a video of a child that presented likes it and then he’s spelling this word. So we went to meet Soma, the founder of rpm in Austin. And by the end of the workshop, he was spelling out simple things like he was talking He just made up a story about a dog and a farm. But these were the very first words that we’d ever heard from him like so ever, ever. Like the first thing I was like, I remember he said, dog and farm and I was like in tears. And I was like, bawling my heart out because I didn’t know that that was possible. And I think that was it so that you’ll hear similar stories from other people who’ve done spelling methods using letter boards, because usually, people end up trying them because all other methods have not worked. And this includes iPad apps, and we throw our code to go we tried AC of all sorts. And it turns out that high tech AC doesn’t work for a lot of people you need to go really low tech. And yeah, that’s that’s the beginning of our story.
5:42
Is that because high tech can be so overwhelming with all of the other things going on?
5:49
You want to answer you want me to answer you can say Sarah, Mom,
5:52
I w I Okay, go ahead.
5:58
So why does high tech AC not work for you? A a mov keep moving e whatsaap OBE And is that an S? Okay, r r v e r, s, STI, MULAT and E and M overstimulated. Okay. Yeah, so I think that’s it’s it creates recurring patterns. So Sid, had figured out how to say a sentence. And it’s just like all of these shiny buttons. And he would say the same thing, I want to eat cookie over and over again. And what we noticed was, and I’ve noticed this with a lot of other people, or their kids, too, is that it was good for asking for what you want. So I want cookie, I want music and but that’s where the communication stopped. And a lot of people will argue that that’s communication. And it’s one step. But that’s communication is also this, it’s actually this, like, it’s not just saying what you want, it’s, it’s sharing that it’s a great day outside or I’m overstimulated or I are writing a piece of poetry or something like that. And I have never, for an autistic child, okay, I have to make this if you have a stroke or something that’s different for for an autistic child and very rarely seen, iPad based AAC is to go beyond the I won’t. I’m not actually sure I’m not an expert in this. I have not seen it. But I have seen it worked well for kids with cerebral palsy. For people that have had a stroke, and so on, I’ve just not seen it personally worked very well for autistic kids. And I’m happy to be proven wrong by
7:39
what’s the RPM, our rapid
7:42
mounting method. It’s a it’s a method of teaching academics part of it, some parts of it are the letterboard. And some parts of it go beyond. So it’s a was the first method that taught kids to start using letterboard for academics and communication.
8:00
How long ago was that created? I actually don’t know.
8:03
I referenced the website. It’s Halo dash soma.org. And I can also email that to you. But actually Don’t I know it was more than 20 years ago, because I know that’s almost been working with her son for a very long time. So it’s been around for for a long time. It’s just been recently that there’s been a lot of activity and awareness around it. And I think a lot of it is like, over the past year there has been a movie called spoilers. It’s a documentary and I think that’s created a lot of momentum as well. But yeah, it’s been around for a very long time. And you went to Austin. We went to Austin. Now there are pain practitioners everywhere. I think even at the time they may have been but the founder lives in Austin and that’s where we went to see her.
8:48
How did you find out about it?
8:50
I know that a friend told us I actually I’ve thought about this many times and I don’t remember who told me it was somebody that said you should try rpm with SE and it was in the back of my mind and then I saw this video somewhere. I wish I could remember who so I could thank them. And it is like the single most transformative experience of our lives.
9:10
said how did that feel to be able to communicate? You want your
9:14
elbows to be supported? So let’s scoot back. Okay.
9:19
Listeners vise is supporting SIDS, elbows,
9:23
wrists, okay. I F E L T I vote T E I think r i g doesn’t make sense to you yet. Alright. Keep going. F I. E I felt terrified. t t h a t I felt terrified that Okay, keep on em. Mine. V. Oh, I see my voice. W A. My voice was F. I and a L. L. Finally, F. R. E. E
10:38
felt terrified that my voice was finally free. You want to expand on that?
10:44
th, a T. What’s an eye? That is a n. Edward. Oh, that is a lot. O off. R ri, k r e. S. P keep moving. Oh, and s. I, B. I? N. I? T. One? That is a lot of responsibility. Anything else? No.
11:35
I wish everybody including myself, always understood the responsibility of our voice. So you were eight said when you could finally begin to communicate?
11:45
What’s it? Why eight? S? Yes.
11:50
And up until that point by and said you, you were educating at home? Correct? Yeah,
11:58
for a year before that, we started making some choices like I would take a sheet of paper like this. And I would just write you know, do you want me to read a book? Or do you want me to, I don’t know, let’s go out for a playground. And he would just point to one of them. But even that was with from seven to eight before that, I had no idea what to do. So for the first seven years of his life, all of us at home, thought that said was a black box that we could never reach.
12:25
But in order to use this said you have to know how to spell and your alphabet and all of these fundamentals that are taught in, in school in kindergarten and going up? How did you learn those?
12:42
Em? Oh, S P, most k I D? s most kids A R? R S, P O N? G SPO ngi. G has,
13:15
most kids are sponges. Anything else? I would just want to add to that is that, I agree is that a lot of kids have exposure, a lot of the input that we’re we may not even be giving them we may be talking about the news. And we may be you know, we have things going on in our lives. We’re interacting with each other as adults, we’re interacting with other kids. And I agree that most kids are sponges, especially kids who are not actively getting input because they have to be sponges because they’re sitting in a corner and, and observing and I’ve seen this to be true, mostly is that I honestly I did put a few reading programs for said on TV. So we used to watch a couple of I think it was called Love and learning it was it was made by this by the parents of a girl with Down syndrome. And it was just just spelling and understanding a few words. So he did see those videos. I remember my daughter was seeing those videos with him. And she was one at the time. And I think it was four when I put on those videos. And they were so effective because she would insist on sitting wherever he was my daughter’s neurotypical, as interesting because by the age, she’d started at six months, actually, when he was four, and by the age of one and a half my daughter could read newspaper headlines and I never taught her to read she was just watching the same programs as said, but she would just sit and watch them. And I think that if she could read having watched the same programs then see any any kid with a disability would learn that too. But oftentimes we’re we’re not sure that they will so so yeah, I agree that kids are sponges.
14:49
I’d like to go back to something you said vice earlier. How people saw Cid as a black box empty Maybe note, maybe here’s, here’s, here’s the iPad and just tell me what you want nothing, nothing deep. Nothing really expressive. Not only am I totally impressed by you and presenting this way of communication to Sid. And of course, totally impressed by Sid and his intelligence. I’m so saddened by so many countless other people that have just been called a black box. And they said
15:34
that they felt like that was their experience as a family. That was their fear. Yeah.
15:39
Is it wrong to talk? No, no, I
15:40
just wanted you to because you said other people,
15:43
other people, too. And us too. I think I think I think both ways. So I hear you. And oftentimes, if it’s not the family, then it is everybody else seeing the child has basically nobody knows what to do.
15:55
Yeah, nobody knows. And then even the thought process of an iPad being made to, to maybe have a child express more is just like, oh, well, what like kind of why we’re just, let’s just do it once.
16:11
Yeah, I’m actually the iPad is like the apps are designed so that I mean, the developers will tell you that you can say whatever you want. And this is true you if you can navigate it. But it’s a lot of motor planning. And it’s a lot of, it’s a lot of figuring out how to order it. And honestly, in our experience, just having an A through Z letterboard was like, way easier. And it takes away from a lot of the planning. And it takes away from a lot of the sensory overwhelm. And I’m not, I’m not coming out against iPad apps at all. But I just want to acknowledge that because today, they there seems to be a thought that if you can’t speak then an app will work for you. But that is often not the case. And if anybody listening finds themselves in a box, where they’re this is all their tireless stopping communication at the eye one stage and not moving forward. That is when I would say look for low tech, AAC look for look for letter boarding methods of communication.
17:07
Because when you when you go into the school system, and they’re, they’re discussing your child’s expressive language, it’s so important in the way that they are viewed and the assumptions that are made as a more you know, societal, but also when we’re trying to secure our child’s right to an education. And this would be a great technique to bring in to your IEP because part of what our experience with Liam was that we would hear all of these opinions about his ability and who he was and we really just had to show a few examples that that’s not the truth our you know, our child does communicate our child does is able to do these things the fact that he you know, these that does this, isn’t this what will open the door I’m so curious said if you can think of was there a time along the way before you found this freedom of communication, that there was something that you wanted to say, can you Is there something that you can recall of something that you wanted to say but were unable
18:18
A R? T. I see you and a What’s up T please look, I realized oh, articulation i is H E A vil the moving? Articulation is heavily e d e sorry d what’s the EP? E and D? E you’re slipping you have to watch the E Bringer I said if you look at the screen, you’re not gonna be able to spell and the articulation is heavily dependent o on M O. T or moto s on the board. Skip on SK i and and motor skills and N D and R. II or the hi the GK implemented standing for slipping or e g. U. l, a change by Oh, and
20:24
articulation is heavily dependent on motor skills and regulation. I don’t know that that was a straight answer to the question, but keep going if you have more to say
20:32
C S C H O O L schools s. T. R RB doesn’t make sense are you G, G, and school struggle? w i t h with ki Rovi? D. I and the providing? And you bring your vision your school struggle with providing e i t? H? E? Okay, anything else?
21:36
So you said articulation is heavily dependent on motor skills and regulation and schools struggle with providing either are you making a point about why it’s hard to integrate these communication techniques in school? Is that Is that what you are trying to comment on? Yes. Okay.
21:53
So
21:56
to expand on what he’s saying is a communication is a motor skill process or the ability to move your hand. But it’s also nowadays, communication partners, which is what I’m doing, as I’m standing next to said, and I’m being a communication partner, you’ve noticed me prompting him you’ve seen said bring your eyes set, stabilize your bodies and the attorney yourself towards the board. So I’m prompting him to make sure his body is stable. And my presence also, we now call communication partners, communication regulation partners we provide whoever it was in my place, any communication partner would also be a place of safety and trust. And we don’t talk about this piece a lot. We don’t talk about regulation a lot. And in any kid with a disability, this is one of the biggest aspects that impacts communication is how regulated and safe they feel in their environment. So this isn’t, unfortunately, this isn’t a situation where if I were taken away, and somebody else were brought in, they kept the letterboard said, spelling would be greatly impacted because the regulation piece would change. So they would have to train with it for a while to build that trust and to know to understand his body, maybe a month or so. And then they would be able to work with it. So it isn’t something that can it’s not something like an iPad where it doesn’t depend on the person. Actually nothing is everything depends on the person who’s every skill that a child has, especially when they’re struggling with dysregulation of their body when they don’t know where their body is in space. It’s very impacted by how much safety and trust and regulation, their communication partners or any learning partners bring to the environment. So on a scale of zero to nine, I said what you wanted to say says that Do you agree? Eight Nine,
23:50
something I was going to
23:52
know I was just I just wanted to no set if there’s anything that you would want to say to any parents or caregivers over that are listening and their child is what would you call what would you say vice what is it called nonverbal, nonverbal
24:10
or non speaking these days? Non speaking, yeah. Nonverbal implies there’s no language but there is language they’re just not
24:16
sure. Not speaking.
24:18
Yeah. So advice to parents that have kids that is non speaking, that are non spatial, so amazing. W A, S, T, E waste, and or t waste not. Why? Oh, you’re the I M waste not your time. And then st a, our start as P E. What’s that said
25:05
you’re not looking at SP E L?
25:08
And if Okay, bring your attention back SPE LM I am stopped spelling T, or D. A
25:26
one way it’s not your time start spelling today. And do you mean teach? Do you mean teaching to spell or spelling as a form of communication?
25:37
See? Oh, so he’s telling, you can finish it up from uni. Cn am. am, I am Owen.
25:52
So it’s not your time start spelling today. And by that we mean spelling as a means of communication.
25:58
So spelling to their student spelling with their student with their student,
26:03
when you talked about having someone there with said when he spelling I’m witnessing right now sit is picking out every letter and spelling, you are holding the board. I am. And I feel like I know why it makes but maybe you could get in some details of why you’re there holding the board and said the board being maybe propped up next to sit.
26:27
The techniques starts off like that. Having the board being supported independently where Sid can spell is a more advanced step of the technique. And there are a lot of kids that have gone there and a lot of kids. So ultimately, the goal of whether it’s RPM or STC or any of these methods is for the child to be able to type independently. So when you have a child that’s gone through the whole process, you will be you’ll see a lot of kids and adults, they’ll just have like a prop keyboard, and they’re now typing independently. So that is the goal. It depends on this is maybe like the third or fourth step toward that goal. So it’s I heard somebody used the analogy or as for someone that were, you know, that maybe lost use of their legs, and they’re now trying to learn to walk, you can think about it as going from one level of walking support, like being in a wheelchair to maybe using crutches like that. So this is a more supportive form of communication, because I am here. And if so it keeps moving. So I tried to keep the board centered for said nowadays, he doesn’t move that much. I don’t need to keep it. So eventually our goal will be to keep the board steady. I don’t know why it makes it more difficult. But that’s a more advanced level of communication. So that would be the goal. We’re just not there yet. So we’re I’m holding the board. Yeah.
27:44
I would imagine just the regulation, the amount of regulation it takes for your body to get it still. And then to go to a board that still would be a lot more. Did you want to say something said? And?
27:58
Why? Keep moving? Yes. Well, I owe you. And, and B doesn’t make sense. Na, I and nai led you nailed. You nailed it.
28:17
So what you said Laurie? So it takes more you have more to say? No. So what you said is that when something is very steady, you kind of have to steal your body to be able to to go in and point and point. But when I think when he can move and then I can I can regulate him here. So I can say like, be accurate, Be precise. I’m constantly counting and stuff. So there’s this external regulation piece that’s helping.
28:44
And this comes from this isn’t possible. None of it’s possible without what we spoke about in a different episode, which is assuming, assuming stability,
28:53
assuming competence, intelligence, all of that. Yes. Do you want to
28:57
talk a little let’s revisit as because let’s revisit that?
29:02
Well, it could never be said too often. Yeah, you know, we bring
29:06
it into every week we talk about it. I mean, now Liam’s in a different school that that does assume that he’s able, but I think it’s a really great point to to revisit.
29:20
Well, we’ve brought it into school, but we’ve brought it to our home and our
29:23
home in our life. And it really is for every relationship and every interaction you have. Yeah, it in your life.
29:34
Absolutely. Yeah. And you want to go first or me. You okay? I’ll go
29:44
assuming intelligence especially when you have a child that’s not speaking or when you have a child that’s using a different means of communication is really important. Because you can get very trapped in because I’ve seen people that start learning RPM or STC and they get trapped in and just teaching the child to spell. And even if a child doesn’t know how to spell, usually when you start using this, they’ll figure it out because because you’re, it’s it’s like it’s organic through the process like there’s no other way you can go anywhere you have to learn to spell if you’re using this technique, right? So it’s, it’s important that to be able to move on to complex forms of speech that you allow the child to have complex thoughts. And even though we’re not ready to allow them to have those thoughts or not, we can we can create an environment that is that doesn’t allow for them. So if I’m constantly having baby talk with said and, you know, with with just said behavior, and you know, like his body language, it’s so easy because he’s, it’s so easy to go all, you know, you’re so cute. You’re like a baby, and like, my husband will do that a lot. And we often get into arguments, I’d like to treat him like a 16 year old and but he’ll say, but he’s so cute. I want to just inches, cheeks and stuff. And I mean, I still pinch his cheeks and everything. But it’s very, it’s very easy to start with kind of a discussion where we’re doing baby talk, and then there’s no, how can what is they’re trying to say, when you suppose you ask him? Do you, you know, do you see the color of those leaves outside? And then do you know what color and if we’re just talking about color and the alphabet all the time, there is no room for the mind to expand, you have to create the space where the mind can expand and fill it with art. And that’s, that is what assuming intelligence is about. And that’s why I say that. Assuming intelligence reveals intelligence, that I always feel like the mind is like a gas where it can expand to fill the space that it’s provided. But you have to provide it with the appropriate container that
31:39
it can fill.
31:41
What are some ways that you provided space for more complex thought?
31:45
I didn’t do anything consciously. But I just made sure that the discussions and like our daily conversations were age appropriate. And by that, I mean how I would talk to a neurotypical, when said was eight and you’re a typical eight year old or a neurotypical 10 year old right now 16 year olds, so I’m not bathing down the conversations at all. So the discussions we have or whatever I hold him accountable to are the same things that I will hold a neurotypical person accountable to the the exposure to media he has, and I don’t mean social media posts, but I mean, like, if you’re seeing a live video of any sort, it would be, it would be the kind of video that I would show another child of the same age, the discussion that we would have on whether that’s romance or even sex education or anything like that, that would be something that I would have with with a person of that age. In fact, the younger the, one of the discussions in our homes, is whether the books that he’s listening to an audio, you know, are appropriate for him and they are because they’re young adult novels that have been you know, rated for kids that are in 10th grade like he is, but I mean, we have this tendency to protect our children with disabilities and we kind of get very prickly about you know, is it okay to expose them to this much you know, all within balance of course, but I found that it is exposure a little bit more exposure is always better to help the mind expand
33:11
said your experience with assuming competence and ability. I’m sure you’ve experienced the non expectation Do you want to talk on that?
33:24
Okay, when you put your legs down stabilize G, E and E or work or a l l. Generally, p e o p and generally people T be a treat me and i k like a bee a bee and
34:08
like a baby. Okay. I O or LIMOK with with it as Oh, keep your eyes on the ball if you can. Some pain. I am I’m okay with it sometimes. Be you but I can see a but it see a puncher. It can Get a it can get what? Je A. I think it’s a N N. O reducing stabilus
35:16
O ye i and it can get annoying. So generally people treat me like a baby. I’m okay with it sometimes, but it can get annoying.
35:26
I bet. Yeah. Is there anything you want to say about it? Like how you feel beat when they annoyed when they’re treating you like a baby? When is it okay, but when is it? Okay? Like, if someone’s treating you like a baby? What makes it okay, just like who that person is? Or
35:43
S O. M? e? Sometimes. I L. I? Okay. I like tea. Or is that HRCUDC? Ed D? LM?
36:10
Sometimes I like to party specs. Okay, when he wants to cuddle? I think it’s okay. When? When my husband does it. Is that what you mean? When Baba does it? It’s okay. Yeah, so when family does it any wants to cut it?
36:21
I think we all enjoy a cuddle. More often probably than we admit. Yeah. So when people limit you don’t see you at all. Is there? Is there anything here that you want to say about that?
36:38
I want to preface that by saying that, that, that a lot of autistic non speakers have expressed a lot of dismay and anguish about that. But it also has the personality of a Zen monk. So you’re probably not getting the full story. So he’s, he’s very much he’s like in his internal meditative state a lot of times, so it probably annoys me more than him. But so you’re you’re getting like a partial picture of because he that that is his inner personality.
37:07
No, I love that. And I think you know, that’s ultimately, our goal. And I feel like by one thing, we were having an interview earlier this year. And one thing I realized was it was with a group of researchers, some of which had Down syndrome. And what I realized in my conversation, and this is probably going to be proven, again, by Sid, is that as parents, I feel like it affects us. Maybe more, because we’re on the outside seen it. And I think that like I know, for me, I think I’m getting better at it. But I feel always that need to either validate or prove or, you know, one of those things because we are as the parent fighting for our child to be seen and included. And, you know, all of those things.
38:06
Yeah. Because you asked the researchers, you know, how they felt about when people have low expectations of them or assume certain things about them. And for the most part, it was like, I don’t know, that’s, that’s
38:18
not me. That’s them. And that’s, that’s someplace that I’ve been working to come from, what would you like to say said said you have the best smile I gotta tell you,
38:30
m o t h e Mother, Mother mothers a mothers are key. Oh, okay.
38:48
Mothers are again
38:50
okay P ah oh I see okay, P r or D. You see, I and mothers are producing a W H O and a hole maybe early okay. So, n stabilus ln doesn’t make sense l o whole lot O of g our eye e grief A and
39:38
A and N D and L O V E mothers are producing a whole lot of grief anger. S You okay now as you started working or You, G tough and I F have life. For moms. Yes.
40:13
Mothers are producing a whole lot of grief and love chocolate.
40:17
So that reminds me I wanted to talk about SIDS poetry book because that’s very, that’s very spot on. That’s very spot on and said how you wrote a book of poems?
40:30
two books, two books.
40:31
I think we don’t I don’t know, maybe we only have the first book. Yeah, I’ll send you the link to
40:35
the second book. It’s called Proceedings of the Pullman Rotary Club. And that’s because he, we have a club of nonspeaking poets that meets every full moon. And that’s called the full moon Rotary Club. So the name of his book is Proceedings of the full moon Rotary Club. It’s a collection of sets forms.
40:53
Do you meet via zoom? or in person? Yeah.
40:56
Yeah.
40:57
Is it open to new members if someone was interested? Absolutely. Okay. And is it open for members who are not yet speaking and communicating that are still is that something that
41:11
anybody was having? I think it started off as non speaking Autistics who are spelling to communicate, but it can be anybody in any any What should I say any part of the journey?
41:23
How old were you said when you wrote your first book of poems?
41:28
You want to go to the number word volume.
41:30
And oh, O. T. ‘s, you are not true.
41:38
I will be about two years ago that is first book was published. So I would say maybe close to 14.
41:44
And then this new book of poems, it
41:47
came. It came recently.
41:49
Right here.
41:51
I came, still not unwrapped a lot of these. So yeah. Last month or so. It’s a pretty it’s a small book. It’s, they call it a chapbook. So it’s got about maybe 20 times or so who does the artwork? This particular painter His name is Brian Lucas. And this is from I’m guessing he works with the publishing company, which is state champs San Francisco.
42:15
How were you introduced to poetry said are by show of hands for that
42:20
we had. So my story is that we had written he had written a few points, just like that. And while I didn’t know if they were good or bad, but I had a feeling that he was they were very heartfelt. So I’ve reached out to a few people who referred us to Chris Martin, who is a poet and he teaches a lot of non speaking quotes. So since been working with Chris Martin for the last three years, and yeah, it we started just different the start of the pandemic in May 2027. Chris meet on Zoom every week, and that’s how we got started.
42:58
You, you, II, E, queer, am I and D. We’re minds. C, O, and N, E. E word. Look and go please. Okay, see where your minds Connect. iniciar tnh and our end? Oh, and you went? clear minds connect through P O. Et?
43:40
Why will your minds connect through poetry? Sit does a lot of writing about about neurodiversity and queerness.
43:52
will define what you mean by queer. Um,
43:56
you want me to repeat the definition you gave to he spoke to a group of college students a couple of weeks ago, Peter, you want to go to art repeat or n for new? So you can say again?
44:06
Which one you want? Me?
44:08
So somebody asked him this very question because he’s talking about queerness. And he was talking to a group of college students that were reading his book as part of, I think perhaps as part of their curriculum. And he said it means to be so free that you scare yourself.
44:27
Wow. I don’t have anything else to say about feeling being queer q u e e r n us weirdness is S T R E and G furnace is a strength. Okay. Okay. The Startup p r i d of be I am okay the pride of being stabilized a little bit just pushed on your hands they feel your hands the pride of being to you, e e queer s h o you can take that as should be PVER H or can be reversed. Bo R A T Reverberi p h keep moving Oh, move it you reverberate through S. O CIETY. The pride of I think you said being queer should reverberate through society IAQUEE are a as if you
46:32
okay you might want to censor that part CK
46:34
I’m watching I’m watching you. Yeah, we don’t have to censor that. I am watching you. You don’t know what said is gonna say? Yeah, no. And I’m watching it. You know, I’m watching you.
46:52
They’re watching me cringe as it spells out.
46:55
You’re like, What? What? Career as
46:58
I knew what the next word was, and I was like, maybe he will say something else. But he’s been on a on a mission to see as many efforts as he can in public so he’s
47:08
done nailed it. Checkmark,
47:11
checkmark, do you want to talk more about that?
47:13
I e, m, e. S, E XUA. Me asexual, G or B. But I Okay, I EOD, D, O, and T I don’t. And I N RK? I don’t like T H.
47:51
So when I take my board back, it’s kind of like a reset problem. It’s a visual reset.
47:56
I don’t like that. It is c o n. S. IDE.
48:08
S That made sense. Looking back.
48:11
I don’t like that it’s considered a D, E. F. A. You keep moving a default or F? I R D
48:33
as I’m asexual, but I don’t like that it is considered a default of DSD as being down syndrome.
48:40
What would you rather it be considered? I don’t think it’s a default. I don’t think it’s a default. And I think this is a great conversation said to be having because this is Pride Month.
48:51
He says mine queer Ness. So he’d rather it be considered his clearance? Or perhaps So would you say be be considered like your individuality as opposed to just being like, part of a group that is stereotype? Yeah.
49:09
Well, I think there’s a lot of things that people will put under a stereotype. And that’s really one of the reasons that we created. The podcast is to address the misinformation and misperceptions that people and we’ve discussed that what did you call it? The umbrella? The umbrella diagnosis? Is that what we discussed before?
49:32
Yeah, I think I think the word was derived from Dr. Erica Pearson was diagnostic overshadowing. Yeah, that was medical. But yeah, and I’m totally the same for social thoughts as well. Right. Yeah.
49:45
Yeah, it does kind of blend into that. Right.
49:48
I think it’s a really important conversation because I’m sure that you said that you watch the news together and discuss little and discuss different stories. So this is a lot that’s been in the news lately. And And, and this is an example of what you mean by opening an and allowing room for the intellectual thought. Did you want to say something said
50:10
X, ie extremely valuable. Okay. I am, I am P, P O,
50:24
so I’m going to assume that was important to
50:28
N R G, E A R gear and what you mean by gear, q u, B, E, R, N E
50:46
extremely important to gear queerness
50:51
in D. S. So, that’s down syndrome. Anything else?
50:59
I don’t know what gear queerness is, do you mean allow for would that be you can give me a number rating zero to nine would that allow for
51:09
okay he gave a five so not allow for E and C or you encourage V I S C. U. S as holder closely as looping encourage discussion.
51:36
Okay, so, here he means encourage discussion of queerness endorsement.
51:42
So you’re saying the the what we just say I’m sorry about the umbrella the diagnostic overshadowing doesn’t allow to have the conversation about queerness and Down syndrome. Would that be correct? Is that what you’re saying? Said?
51:57
Yeah, nine? Yes. So maybe maybe allow room for discussion of that. Would that be
52:01
better? Yeah.
52:02
It seems like that’s a secondary way that your your voice has been silenced like one is to not assume the ability or that there’s a communication there and then to to limit the kinds of conversations that we’re allowing,
52:20
I would assume there’s a lot of people with Down syndrome that are not asked the questions. Yeah.
52:26
I didn’t actually ask set the question. So it’s not like I even I encouraged it or anything like that. Like, I don’t know that I created this space myself. But it so happened that a family friend came out as asexual and came and shared it with us. And I think that was the first time said I’d even heard of that or known that there was a possibility. And I remember that day, because it was like, like, you know, 100 bulbs went out in his mind. And he like it just fell. He he said immediately that so am I and he’d been trying to talk about eight and he didn’t know that that was a thing. I think so he’s really happy to hear that. About that.
53:08
What are your pronouns? Said?
53:10
He. H i. M? Him? He him?
53:18
I’m sorry, I didn’t ask you that before. I have to tell you. I love our conversation today. This is I mean, this is love. I’m so I’m so happy that
53:30
he just asked you a question sit and I might have an idea of what the answer is going to be. And then like anyone else, you’ll surprise me with your answer, because it’s your answer. Well, I had no idea what this conversation was going to be. But I
53:42
would say, you know, by we had spoke before about before we met said because this is our third conversation. And I feel like in the education realm, it was I think you were talking about geometry or Sid had I have to go back out a table. Was it the periodic table? Because he made a joke?
54:06
Was it this one where I asked him do like the next year? Shall we study geometry and chemistry and this and that. And then I said, spell out your answer. And he spelled F un Oh, I asked him what did we miss? And then he spoke up un. I don’t remember that. That’s good. That’s pretty much a standard in art because I can like go on the other side. But I’m like too much because I’m a teacher. And I’m like, heavily into this assuming competence. So I’ll just like go let’s do this and this and this. And then he’s he’s like putting on the brakes and saying it slow down. A lot of times, all he wants to do is just actually write poetry. So since we’re still in school, we’re still doing well, we go to an online public school. So it goes to an online public school called Connections Academy. So he’s listening to these lectures on video and then I’m his communication partner for giving the answers.
54:55
But it’s
54:58
I can see that he His mind isn’t there like. And I’ve noticed that in a lot of neurodiverse kids that there is what I’ve heard the panty, the term is Splinter scale, it’s like this one skill that is so strong that it it supersedes everything else. And sometimes when you find that for said, That’s poetry and writing, that nothing else is, is even remotely interesting. So even language when we’re studying, like when you’re studying English, 10th Grade English and we’re doing he has to listen to the short stories, and then he has to answer questions that why did he do this to be and he’s not interested in analyzing and regurgitating stuff at all. So he, he like right appointment response or something that’s completely unconnected, or make up something about a and b. And he is so strongly leaning towards that direction that I feel like we’re drifting against the current a lot. And I’m every year tempted to just pull him out of regular education and just like maybe write poetry all the time, but we’re already finished 10th grade and I’m like, we’re never going to get this chance again. So I’m like, let’s just finish two more years of school and then you can just sit and write. He’s okay with it, too. But, but I think the the correct analogy would be, would be going against the current we’re still going. I’ve always been a proponent of you know, finding the current and floating locate, but just being in school of any sort, we’re automatically slightly floating against the current.
56:31
I think it’s amazing that you found the something that you love to do so passionately as poetry, I love poetry. I was a theater lit major, and I love poetry, perhaps. I know, I feel like what Sophia is in high school, and some of the books that get chosen for them to read aren’t necessarily the ones that will spark inspiration, or you know, I don’t know I love Somerset mom, a moon in six pence or some some other Pablo Neruda. There are some really, there are some really great poets and writers Alice Walker, of course, Maya Angelou, like maybe you’ll be exposed to somebody who, who sparks that fire in you as far as literature, and narratives. I know, I always have that conversation with my daughter, too. Like, why did they pick the books? Where are they picking these books? Because there’s a lot of great literature out there. So I would just ask you said just stick it out. Because I think that is really overall the high school experience. And, and I think that I just think it’s great that, that you’re a poet said, Are you interested at all and writing narratives? And oh, no, no, okay.
57:48
Well, since your poetry doesn’t get written down, without your mom being there, to assist you, in expressing your poetry, I asked the question, Are you thinking of poetry all day long or during the day? Or what percentage of the day do you think you are? Have making up poems and in your mind,
58:11
II, I, a, and I, and T, H. I’m in the M, O. E. What’s it and I’m in the moment and you’re ready H E the M i and the mind w h e and the mind when M R E S O and A and in resonance, one
59:13
or W Okay start over with the mind when in resonance
59:18
Oh W okay wi t with with the D i V
59:32
i am with the divine C A. C OCN can see our E a little bit more present with electrocoat also keeps them here. Can care at can create Mater P O E T R
1:00:00
can create poetry the mind when a resonance with the big mind with the divine Sorry, can create poetry?
1:00:07
Or you I think out Oh, out of a i
1:00:20
i think he said some I forgot his birth sentence I’m in the moment or something like that and the mind when in resonance with the divine can create poetry out of air. Is that one of your poems?
1:00:30
Yeah, that’s that’s a response from a public.
1:00:35
I like watching as as he spelling to you like watching like the thoughts come to your mind. Yes it and you express those is it sometimes hard when you’re writing poems because they’re so personal to recite them to or communicate them to your mom?
1:00:55
Why? Yes.
1:00:59
Do you edit yourself? Why? Yes. Yeah. How do you get a poem that is its most true essence, what you’re trying to communicate?
1:01:15
I, I can’t H E. Ni, N, E, R, G, energy? A I, and I am z i n t. E. R, F. E. E. S,
1:01:45
I can’t have energy interferes.
1:01:47
But well, because I’m curious. Because as you know, when you’re when you’re writing, there’s the process in which we write and rewrite and edit. But poetry is such a pure I mean, every word even your I’m in the moment. And was that a poem? Or did you just make that up on the spot? Or is that like something that you’ve written before?
1:02:06
On the spark? Yes
1:02:07
or no? Yes.
1:02:10
You consider it a point? No, a lot of His answers are somewhat shaped like that, which is sometimes why it’s hard to get very specific responses from said because he’s, it’s like poetry.
1:02:21
No, it’s beautiful. I love that response. And I think you’re absolutely right. When you’re in the presence, what was it of the when you’re to learn of the Divine when your mind is in the presence of the Divine, you can create poetry out of air. And I would have to say that that would be just really the truth about life. In every moment. You know, you make you make life poetry, said this conversation has been poetry. Is there anything else? Because we’ve touched on stuff? I mean, we’ve really talked about so many really big things that I feel like would merit individual conversations. Is there anything that you want to that you’d like to add?
1:03:03
B, E. One, oh, and beyond H, A, P. P, beyond happy? T, or C. H. A. Beyond happy to chat. or D. A. Beyond happy to chat today.
1:03:36
We love to to? Well, you know, you’re always welcome to come back. If there’s something that you want to share, or you want to talk about your poems or anything else. I’m honored that you shared so much. And you were so open and honest with us about everything. I mean, I feel like there’s something to be said that I feel like words are not wasted. I feel like your words are carefully chosen to express at the most concise point.
1:04:06
I think that’s so well put Laurie, because that’s Chris Martin, his teacher wrote a book and in that he wrote about the he has a couple of small passages about saying and that’s what he wrote is that when it takes so much effort of your muscles and your vision and everything to spell out like a single word, it can take up to five minutes for a full sentence or more. What is the word for thrift of words becomes extremely important. So it’s really important that every word means something.
1:04:40
Yeah. I don’t know what to say. I mean, I
1:04:42
don’t respond to Yep. You know, through your poetry, you’re speaking in the most efficient way to express yourself,
1:04:52
and it’s something I can learn. And I know that when Liam was first with his expressive language that was I remember that that being a point there’s not and it’s one of the things I love. I loved when we would talk and sign language. I’m guilty of wasting this gift of words. But just having to choose and say and and know what it is you want to communicate, I think, you know builds that muscle, it builds different muscles and it builds the exact muscles that society tries to deny exist, which is the paradox here because I one conversation with said, I think diminishes every misperception and stereotype that anyone would decide to bring into the relationship beforehand. And that does so much open so many doors for everyone, and people coming behind you. Do you want to respond to that said before I
1:06:01
have anything to say? No responses?
1:06:05
I don’t know. This is an assumption. But I imagine like, sometimes I’ll entertain conversations that don’t necessarily maybe serve what I want in my life or who I am. And relationships. I imagine that you’re you’re more selective and that’s not something that you entertain often.
1:06:26
Alright. So, H A, P. P. I’m so happy to H. E. A. I think that’s here. Ryan? Oh, and by the use of iob. Why are you? Why are you? You’re T H? Or? Ugh. I’m so happy to hear your thoughts. I f IIS or F I N? I find like this. One? Oh, it moved. You. I find you to A or B. I find you to be a que que I and I think it’s going to k and d. Okay, find it R Okay, got it. R E. Kindred. S. O. You went?
1:07:46
So, I’m so happy to hear your thoughts. I find you to be a kindred soul. Wow.
1:07:52
That just fills my heart said and it makes that’s like that’s an honor. That I don’t take lightly. I I gotta tell you that you’re so honest and truthful. When I could see it when you I was like whatever sit is going to say it’s going to impact me. Like I didn’t know, I find you to be annoying. I don’t you know, because you’re honest. That’s like you can’t. That’s such a gift. And I was I was anxiously waiting to see what you were going to spell. And I have to tell you that those words are? Well, you just made my day said thank you so much. I haven’t forgot. I know. I had another question after that. And I think that I think it’s
1:08:37
rare that because I’m always present in sales conversations as onlooker plus communication partner, that usually like many conversations start out similarly where we are asking about, you know, do you get annoyed? And you know, is this is this communication hard for you, because those are standard places where people want to know about how it feels to be non speaking. But then when we diverge to queerness, and, and, you know, just the, and the couple of observations that you guys made toward the end. I think those were pretty unique. I don’t think we’ve actually like, especially what you said that he made the observation of like, using minimal words sufficiently, and also that, you know, he doesn’t want to use his language everywhere or encourage all conversations, those those are not detours that we’ve taken before so I can see why said he does that. Your your kindred souls.
1:09:34
We love you and we see you and we appreciate you 100% So the fact that you felt comfortable enough to talk to us about these things. I think initially when I asked about how does it How does it feel when people treat you like a baby or to not be able to express yourself because I think about our listeners and I think, you know, I know early in Liam’s journey there were years when he was communicating, but non speaking until his expressive language began to emerge. And my motivation was to help him to express himself to minimize frustration, because that’s actually something that with Sophia, when she was when she was a baby, they do baby sign language. And the main goal of that is, so to minimize frustration. And, you know, I think for me, it was an attempt to give a voice to other children whose caregivers may be listening, you know, to give them some insight, and honestly, the rest of the conversation, and everything you shared is just such a gift, because I want to know, you, I want to learn about you, like I do. With everyone I want I want your story is so important. And, and honestly, I love your death, your definition of queer belongs on a button somewhere and a sticker because it’s really beautiful. And I wasn’t sure if you were speaking about queer in the context of pride and LGBTQ. And so that’s what I wanted to, to. I wanted to give you the opportunity to expand on that, and and I’m happy always to have that conversation. Did you want to say something I might see I don’t have that thrift of words that I desperately require.
1:11:36
Why the S Yes. T a, l. K. I am talking. Okay. Or a, b? Or talking about the dance and then talking about the Q, U, B, E, we’re and E as s talking about queerness be as the or the best topic? A are? Okay. Oh, or airmen? Best topic for me.
1:12:35
Best topic like you enjoy talking about it. You wanted to talk more or just best part of our conversation today?
1:12:42
Option one or option two. They said three which means one and two. So what you’re saying? Yeah, so since we use a number word a lot make choices, because it’s less effort sometimes to just say yes or no answer. So yes, it says yes to both as part of today’s and that he enjoys talking about fairness.
1:13:03
If you ever want to come back and talk some more about it, I feel like we’ve taken so much for your morning. But if you ever want to come back and speak for Okay,
1:13:12
yeah, he says he’d like
1:13:14
maybe the one thing I would add to this conversation is like the biggest tools or enablers in our journey where audiobooks because you’ve seen how said keeps moving his body back and forth, because he has, like he’s constantly adjusting for his vision. And he sees double. And even with classes, it’s hard for him to track. So you can see how he spells but he cannot read not because he cannot read but because he his eyes cannot like it’s very hard for him to like, go like this and read. It’s just, it’s just not possible. And you can see how his head is constantly moving to adjust for his vision. So it’s really hard for him. So without audiobooks, we would have been nowhere. So that’s where I make a point about reading comprehension. I will not go into that segue. Now I know that’s a different discussion. But just to make the point that that’s where you can introduce complexities like you don’t have to wait for some magical reading ability to blossom. So we would not have been here without audio books. Like I would say everything is tutorials.
1:14:12
Okay, so that’s another tool audiobooks. And we can put in the show notes. Can we put Chris Barton?
1:14:18
Yeah, yeah. Then his website is unrestricted interests.com.
1:14:22
And then we have said second book, we’ll put a link to that as well,
1:14:29
and a link to the technique that you’re using,
1:14:33
and also links its Instagram page, where he’s not very active these days, but his goal was to put in some poetry every day. So
1:14:42
please do. Yeah,
1:14:44
please do. Five said it was just a fantastic conversation with you today and we really appreciate you.
1:14:50
I always learn so much from our conversations. Thank you.
1:14:55
What’s that? A z. And amazing
1:15:05
this Oh no, I probably won’t say discussion. So kind of in my mind I was going to ever do any work with the ISC
1:15:12
U. S. S.
1:15:17
Amazing discussion.
1:15:24
Thank you.
1:15:26
Yeah, thanks. It was an amazing discussion.
1:15:30
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If We Knew Then - A Down Syndrome Advocacy Podcast 