[Show Intro] Jala Hey, thanks for coming! I'm glad you're here. Come on in! Everyone's out on the patio right now. Looks like a couple of people are in the garden. I can't wait to introduce you! Can I get you anything? [turned away] Hey folks, our new guest is here! [Intro music] 00:00:01.53 Jala Hello, world, and welcome to Jala-chan's Place. I'm your host, Jala Prendes (she/her), and today my guests and I are hanging around the kitchen table discussing their experiences parenting a non-speaking child. I'm joined today by Tom (he/him) and Ollie (he/him). Yay! 00:00:19.48 Ollie Whoo. 00:00:20.61 Tom Rajan Hello! Just to capture the energy. 00:00:24.33 Jala I'm like, okay, how long is that as is that O gonna be? I was just like waiting. I'm like, oh, is Tom really gonna go until he has no more breath? 00:00:32.65 Tom Rajan I should have, but we didn't do do that today. 00:00:37.12 Jala It's it's a Friday. I don't it's it's a later or on a Friday. So like, I don't know about all that anyway. So ah for everybody who has no idea who you are, Tom, Tom is my my tie, bro. 00:00:49.15 Jala um I have mentioned this before on the level, but now I am mentioning it here. And I also dragged him on my show. So all y'all will get to hear Tom a little bit today. So, um Tom, I'm glad that you can appear here on the show today. 00:01:03.86 Jala It's very cool to have you. I'm excited. 00:01:06.11 Tom Rajan Yeah, absolutely. I'm super excited. And, you know, again, this is my first time in a while being in any kind of podcast environment. And I think this is a cause that's near and dear to me. So I'm obviously very excited and honored to have an opportunity to share my story with all of your viewers and hopefully share it with many other people out there. So again, Yala, thank you so much. My Louis Thai bestie really appreciate this chance. 00:01:31.87 Jala Well, absolutely glad to have you. So Ollie, for you. Hi again, Ollie. It's been a few minutes since the last time you were on. How are you doing? 00:01:40.34 Ollie Yeah, according according to Facebook, which apparently, if you don't log in on a particular device, won't save messages for you. So up according to Facebook, it's been six months nearly, or a year. 00:01:50.84 Ollie ah Like, ah he couldn't decide. 00:01:53.41 Ollie It was like, you guys talked in May, or did you talk in May of 2023? I'll never tell. Like, okay. 00:02:00.88 Jala Well, um like our our last podcast episode came out, I think in June. So like it, yes. 00:02:05.61 Ollie Yeah, so we did record in May, yeah. 00:02:07.99 Jala Yeah. Yeah. So, so we did record in the, at the end of May, I think. So yeah. Well, welcome back, Ollie. 00:02:14.42 Ollie It's great to be back, Jala. 00:02:16.01 Jala Yeah. I'm so glad to have you both here. So, um, as always at the beginning of the show, I want to kick to my guests to talk about the stuff that they do. Tom at this time does not have a stuff that he does, but he is doing this right now. So you can listen to him here, or you can be in my Jala-can Discord server and, uh, catch him there as for Ollie. Tell the folks what you've been up to in podcasting land. 00:02:41.62 Ollie I'm trying to think what the best one to start with. So my good friend Sarah has a podcast called Media Evil and she's just about to enter her final season because she's become tenured in college and because of that I think she ah she doesn't feel the need to impress her um superiors anymore or alternatively 00:03:05.44 Ollie She's worried about the fact that she drops the C-bomb on that podcast quite regularly, and she doesn't want to be bringing the college into disrepute. But if you want to listen to an expert in medieval history, which is what Sarah is, and a really enthusiastic amateur, which is what I am, you should listen to Media Evil, where we watch medieval set movies, TV shows, and read medieval set books, and then we discuss them, and then she tells me what they get right and what they get wrong. 00:03:34.62 Ollie Which is a ton of fun. And as I said, we're coming to an end of the podcast. I was the original co-host for the first season and a half. And then I had to stop, strangely enough, related to my son and related to the episode that we're talking about. And and after i I quit with that, but i'm I'm coming back on as the regular co-host for the final season. So it's going to be fun. 00:03:54.90 Jala Oh, Dave will absolutely be excited about that because Dave had been listening to some of the episodes where you were on there as a guest and he was really enjoying those. So yeah, definitely check those out. Of of course we will have that in the show notes for everyone with the links. 00:04:11.32 Jala So, uh, as for the show, you can support us on coffee. That's KO hyphen fi.com slash fire heart media and kick us a few bucks. And there are bonus episodes and other stuff like reviews and things that we post on there and show notes, you know, like the 50 million pages, I usually write on a lot of different subjects, you know, like my dissertations and stuff. Uh, all of those are available on the coffee. So you can go there. 00:04:37.28 Jala link in the show notes if you want to support us monetarily. Otherwise, of course, you can just tell folks about this and share this episode and all of the other ones. So ah with that being said, I am very excited to move on to the actual topic of the day, which is talking about being a parent of a non-speaking child. And to lead into that, I want to give the listeners a little bit more information about what we're discussing, like in in a little bit more detail. So I pulled up some information from the Internet. ah You guys can definitely correct anything that you see in these notes, if anything is incorrect or sounds sounds off to you. And Ollie, these things are from American sources, so I don't know if some of the information 00:05:26.26 Jala would be a little bit different over in Ireland, but you can let me know. 00:05:29.90 Ollie No, it it won't be different. And speaking as somebody who has experience of ah the Irish system, we are a wonderful country ah in many, many ways, but it's not it's not by chance that I flew myself over to America five times ah between the ages of three and five to get proper ah autistic education and um some proper developmental help. 00:05:56.69 Ollie at that age because Ireland sucks donkeys when it comes to that. 00:06:01.30 Jala ah To hear you say that, wow. 00:06:02.64 Tom Rajan Wow. 00:06:04.29 Jala i feel like For anybody who doesn't know, Ollie is very much like, Ireland is the best about everything. 00:06:05.00 Ollie That's true. 00:06:09.84 Ollie it It is quite literally the best, but in some cases we are very, very backwards. 00:06:10.44 Jala and then 00:06:14.63 Jala Did you hear just then, Ollie had a little bit of an accent when I said the name of your country. 00:06:20.92 Tom Rajan nonsense 00:06:23.31 Jala it It won't last. I'll go back to me normally. So um anyway, so I'll go ahead and kick us off talking a little bit ah about what non-speaking autism is. 00:06:33.55 Jala And then I will kick to Tom. So I am letting you know in advance, Tom read along. 00:06:35.63 Tom Rajan Got it. I appreciate that. 00:06:40.12 Jala Yeah, so ah what is non-speaking autism? Non-verbal or non-speaking autism refers to difficulties or delays in utilizing speech. It is also referred to as minimally speaking when someone some vocOlliezation takes place but is limited. The person may have difficulty speaking clearly or without interference. That would be the ah minimally speaking or may not vocOllieze words at all, which would be non-speaking or non-verbal. 00:07:08.33 Jala Many non-speaking autistic individuals understand language, but rather than responding vocally, will write or type out responses or use other means of communication such as gestures or body language. They may make sounds just not forming those sounds into words. So Tom, tell us a little bit more. 00:07:28.64 Tom Rajan Yeah, and I think that pretty much hit it right on the head and specific to our situation. Our son, Micah, is he's turning 13 in October. And I would say he's minimally speaking in the sense that he has a handful of 00:07:45.67 Jala Mm hmm. 00:07:45.95 Tom Rajan And he's able to make basic commands, but chain them together to have a proper conversation. That's where the challenge is. It's very much a rudimentary, I want this, I want that. 00:07:58.03 Jala Mm hmm. 00:07:59.32 Tom Rajan And that's the extent of his communication to us. It's very needs-based, very needs-oriented. And it's very simple. There's no complex capability of stringing words together to share complex thoughts or feelings or idea. 00:08:15.91 Tom Rajan I want car. I want Teddy. I want pizza. That's the extent of his conversation. And he's managed to put together some other nuances, hand gestures, pulling people by their hand, pointing the things because he understands how to get the point across. But he doesn't necessarily know the words or utilize the words to get those points. 00:08:44.33 Jala Gotcha. And Ollie, since we're on this subject, how how is you Donal? 00:08:49.73 Ollie Well, ah if you were to replace the word Micah with Donal and the number 13 with 10, then pretty much what Tom just said is how Donal would express things to us. He has a minimal amount of words. 00:09:05.94 Ollie and he uses them sparingly, but I would almost, it's one of those strange things. and it it I think maybe it comes from being a de-autistic parent here. I would almost describe his communication skills as being brutally efficient because he will let me know when he wants something and he will let me know when he is tired of something that he's playing with. 00:09:20.23 Jala Mm hmm. 00:09:27.95 Ollie But a lot of times it doesn't involve words, it will ah involve the physical action of just putting something down and walking away from it or grabbing daddy's hand. That's what like he refers to me as and, and pulling me over towards the fridge. 00:09:40.85 Ollie And then when we get as far as the fridge, right? Obviously we're at the fridge. I know he wants something to eat. And when I open it, he might go Aubrey, which is his way of saying strawberry. 00:09:50.78 Jala Mm hmm. 00:09:50.91 Ollie And, uh, so then I'd be like, all right, so you want a strawberry. So I'll take out a banana. just to uh just to check to make sure he's not just looking for anything and he's very good at he'd look at the banana and he'd give you that look and i'm sure tom knows the look of the child is disappointed that you that you haven't understand what he considers to be very clear communication and i'll put the banana back here and take out the strawberry and he'll give you that smile and again as it's one of those things that 00:10:04.25 Tom Rajan yeah Yes. 00:10:19.13 Ollie All parents of autistic children know when you get that smile or that lightening up at the face, it's it's just the best feeling. like that It might as well be that the child writing a 10-page essay on Shakespeare, it tells you everything you need to know. 00:10:27.15 Tom Rajan It does. 00:10:33.20 Tom Rajan It is a very expressive smile in that sense. And you know, you know, when you get it, and sometimes if it's accompanied with a laugh, that just lights up your days. 00:10:40.62 Ollie Yes. 00:10:41.96 Tom Rajan Like the laugh, you know, the laugh, they're just that moment right there hit. 00:10:46.55 Tom Rajan And you know that it hit. And you're like, okay, I did my job today on to the next adventure. 00:10:52.06 Jala Mm hmm. 00:10:52.62 Ollie Yeah. It's a hundred percent top. Like no, nobody laughs like an autistic child last when they're happy. 00:11:01.19 Jala Well, that's, that's awesome. Well, that was actually going to be one of my questions later on was how your child in particular communicates with you. So I already knocked that out. 00:11:10.12 Tom Rajan Oh, yeah. 00:11:11.25 Ollie Oh, well, I'm sure we can go into more details later on. 00:11:14.47 Tom Rajan Yeah, there is a lot actually done with that. 00:11:14.89 Jala We will, we will. 00:11:15.41 Ollie Yeah. 00:11:17.09 Jala Yeah. I say we, y'all will, you will tell us all about that. 00:11:22.16 Jala Um, but I will in the meantime, continue on with the notes. 00:11:25.89 Ollie Well, just tell just in in relation to what you you read out there, so from the non-verbal bit down to the sounds and words thing, but that's one of the main things I find with people who aren't in the the world such as myself and Tom and and other parents and other people who have ASD is when you read those two paragraphs, it can sound a little waffly. 00:11:47.41 Ollie in so much as it doesn't really feel like they're giving you a clear answer. And that's one of the main things with ASD because the D stands for disorder and a disorder isn't the same as 00:11:58.79 Ollie a disease, it doesn't have specific symptoms. 00:12:02.48 Ollie It doesn't have specific causes. So in any given child, in any given, I'm going to use the word sufferer, but I don't want to imply negativity with that. But in any person who has and ASD or is on the ASD spectrum, which in many ways, all of us are in some, but ah it It can manifest itself in different ways, which is why, in that paragraph, like as you read it out and you read it beautifully, as you always do, as we're looking at it, there's so many inverted commas, there's so many little brackets, there's so many, you know, say the loud part quiet, say the stuff that's in bold, because it is so different for so many different people. 00:12:42.03 Tom Rajan Exactly. And ah one quote that I read just kind of to echo what Ollie said is, when you meet one person with autism, you've met one person with autism. 00:12:43.53 Jala Right. 00:12:52.84 Jala Absolutely. Absolutely. 00:12:54.29 Tom Rajan The nuances and the things that come up from person to person, they're just so different. And knowing people within the autism community, you look at their child and my child, and there is very little that relates them in terms of the conditions. 00:13:12.21 Tom Rajan So it's not something you can say, well, check mark, check mark, check mark. It's a very, very complex piece. 00:13:16.75 Jala Right. Well, yeah, it's kind of the same thing when we were um talking about disability with Lance on this show a little while back, that disability as like this umbrella term, right, this disabled people, you know, there's so many forms that that can take and two people with the same disability, like the nominal name, the disability like ah OI, for example, and, you know, two people who have OI have 00:13:18.65 Tom Rajan Yeah, go ahead. 00:13:45.49 Jala two different experiences of it and you know, like their symptoms and the the way that it impacts their life and how it it alters, you know, how they go about doing stuff varies wildly. 00:13:57.76 Jala So, you know, it's the same thing as, you know, you can't just lump all disabled people together under this big umbrella. I was actually thinking about that when it came to the Paralympics. I had some real deep thoughts about that that I need to hit up. 00:14:07.87 Tom Rajan Right. 00:14:10.13 Jala Laura at bad attitudes podcast, which is a disability podcast I need to hit her up about some of those thoughts that I had because I had some ah interesting ones but um Really this that that whole tangent is just to say, you know um that's applicable to a lot of situations, um you know, not just to Neurodiversity but to any kind of difference that there is perceivable difference that there is in people like say for example ah People are all over the gender spectrum if you want to be you know very reOlliestic about it. ah People like to think in binaries because that's simple, but my experience of you know quote-unquote womanhood is not going to be anything like a lot of other women's experience of that same thing. 00:14:58.06 Jala you know and Everybody's way of manifesting you know different aspects of themselves is going to look different and how that informs their life. 00:15:12.21 Jala so ah Treat everybody. like don't don't ever like i know ah It's bad to say don't ever do, but at in this case, I think it's pretty safe to say don't just assume that when you see somebody, whatever basic information you know about this group that you are assigning them in your head, um 00:15:20.62 Tom Rajan Mm-hm. 00:15:33.30 Jala Don't just automatically assume that all of that information is accurate and good for each individual person. You have to take them on a case by case basis because people are varied and interesting and different and complex. And there are a lot of moving parts for every single person's life. 00:15:52.42 Ollie Yeah, it's true. there's just Everybody is, and everybody is an individual and everybody is completely different. And then within the ASD, the entire spectrum, the difference between a person on, and I don't want to again talk about levels, but the person on point one on the spectrum versus the person on point 2,985, they might as well be non-existent. 00:16:14.16 Jala Yeah. 00:16:17.50 Ollie There's no overlap of the circles in the Venn diagram, but they're but all on the spectrum. 00:16:20.15 Jala Right. 00:16:20.43 Tom Rajan Correct. 00:16:22.05 Ollie And it just it's it it makes it easy for people to say, oh, that person's autistic. All right, oh, I know what that means. And then they move on. 00:16:32.97 Ollie And it's never as simple as that. Even for people who are within that world, I mean, Donal has a couple of little friends and, you know, normally they're in the same classroom in school, but legitimately, you if you met the three of those boys at the same time, you would think that they all had three different things going on. 00:16:54.34 Tom Rajan Yeah. 00:16:54.62 Ollie But as I said, they get labeled as autistic and then people assume it's an easy label to pass on. 00:17:00.02 Jala Right. 00:17:02.91 Jala Tom, did you have something else you wanted to add to that? 00:17:05.43 Tom Rajan No, I think that ah pretty much nailed it. 00:17:06.29 Jala Okay. 00:17:07.31 Tom Rajan You know, just kind of from that perspective that everyone, people will look at it and it's just completely different pieces of it. So I think that echoes the experience pretty well. 00:17:18.24 Jala Awesome. I just wanted to make sure that I wasn't going to talk over you or anything. so 00:17:22.09 Tom Rajan Oh, no, no. 00:17:24.27 Jala Moving right along with my little ah research notes, it's important to understand that non-speaking does not mean that the person lacks understanding of what you are saying or what the situation is. So um a lot of people, if they get this idea of, oh, 00:17:41.07 Jala ah somebody isn't speaking, they must not understand. It's kind of like um a lot of people treat people who are deaf that way as well, you know um or people who you know are are mute for any particular reason and any reason. 00:17:49.86 Ollie Mm hmm. 00:17:51.36 Tom Rajan Yeah. 00:17:56.39 Jala So um researchers estimate that approximately 25 to 30% of children with autism are non-speaking or do not use language in a functional way. So that's a pretty big percentage like that's a fourth going up onto a third of people who are diagnosed with autism, being non speaking or minimally speaking. 00:18:22.04 Ollie Oh, I was gonna say, so Tom in Irish circles, and I'm assuming it's the same over in the States. So that 25 to 30% would be referred to as low functioning autism over here. 00:18:32.73 Tom Rajan Yeah. Correct. 00:18:34.16 Ollie and and then And high function is what used to be referred to as Asperger's, but they very rightfully moved away from that particular name. 00:18:34.50 Tom Rajan High-functioning, low-functioning. 00:18:39.03 Tom Rajan Correct. 00:18:43.04 Ollie So it's high functioning and then low function autism. Sometimes, Low-functioning autism is referred to as classic autism over here, as in when you hear the word autistic, what you would assume that is to mean, as in non-verbal, doesn't make eye contact, is a very individual person who but kind of doesn't want to be left to their own ah devices and you know sit and play with their toys in the corner kind of thing. 00:19:07.89 Ollie But that's that's what low-functioning autism would be considered. 00:19:08.22 Tom Rajan Correct. 00:19:11.57 Tom Rajan And that would echo what we have over here in the United States is, you know, low functioning, mid functioning, where they can maintain eye contact, they can have conversations, but there are certain nuances and stimming activities that they do, yeah that kind of throws them off. 00:19:24.45 Ollie Yeah. 00:19:25.99 Tom Rajan And then of course, your high functioning, as you stated earlier, you know, previously known as Asperger's syndrome, where they have full functionality, but again, nuances. um you know, needs that go outside of what you would expect from a a typical person in that perspective. 00:19:44.11 Jala Right. Right. So typically developing children use their first words around 12 to 18 months on average and may start speaking as early as 10 months. The average age of speech onset is 36 months for autistic children. This speech delay is one of the first signs that autism may be present. 00:20:05.29 Jala and I know for a fact that some Dave has a lot of people with ASD in his family and we also suspect that he probably also is ah to some degree as well, although he hasn't sought out a diagnosis. He was looking at all of the paperwork um that they were going through for his nephew and going, oh Oh, but this is me. 00:20:29.33 Tom Rajan Can I go through this? 00:20:30.56 Jala Oh, OK. Well, um you know that that kind of situation. um so ah But his niece and nephew were both diagnosed when they were like infants. 00:20:42.64 Jala So um I'm assuming that part of the reason for that, and I didn't ask him this question before the show, but I'm assuming part of the reason for that might have been that speech delay that they were seeing. 00:20:53.47 Jala so um In any case, some non-speaking autistic children eventually do begin to talk. Research has found that the older an autistic child gets without using speech to communicate, the more likely it is that they will remain non-verbal. 00:21:08.80 Jala so um what I know like we're we're mixing up the um academic and the experiential stuff, and I feel like that's the best way to go about this conversation, ah just so that way I can insert some stuff and you know not just be listening the whole time. 00:21:28.21 Jala ah So how was this like how did the diagnosis come about for y'all's kids? Tom, you talk first, since Ollie usually talks first. 00:21:39.08 Tom Rajan Yeah, go so, um, I think that pretty much echoes what our situation was. There was a time where Micah was forming words and he had, you know, just simple words. Like I would play a game when he was in the bathtub. I would say ready set. 00:21:56.57 Tom Rajan And he would say, go, and I would throw this little plastic football in there. He would love it. He would start laughing and smiling. And then that was kind of where it was at. It was just the words like mom, dad, and go, very small words and never really accelerated beyond that. And it got to the point where he was a year old. There were some other motor coordination skills that were lacking that we were, you know, raised red flags. 00:22:26.46 Tom Rajan But the real red flag that popped up was he started losing words. 00:22:31.11 Jala Oh. 00:22:31.17 Tom Rajan I would play that game, ready, set, and he wouldn't say anything in return. And he would just look at me. And I was thinking to myself, that that's really wrong. 00:22:43.45 Tom Rajan So during the motor coordination part, we initially had him evaluated by his by his physician. And his physician didn't think much of it. He looked at him, saw that he was hugging his mom, saying, look, he's he's very affectionate to his mom. If he was autistic, that sense of touch would not be something you liked. And again, kind of to our original point of ah trying to cast this singular light on certain behaviors and saying that's autism. 00:23:15.13 Tom Rajan So that was the original case. And we thought, okay, he's still walking on his knees. He hasn't fully stood up. And now he's losing words. This is more of a concern. So we went to a different doctor and then that doctor did say, yeah, we need to get him tested. 00:23:30.80 Tom Rajan And around that time we got him tested. A few weeks later, he got the formal diagnosis that yes, he is on the spectrum. And he was maybe at that age, around three years old. 00:23:38.62 Jala Mmhmm. Mmhmm. 00:23:40.58 Tom Rajan So at that point, we knew, okay, this is a long haul type item that, and that's when I started doing my research, you know, me not having much, what is the cure for autism, not reOlliezing it's a disorder. 00:23:53.38 Tom Rajan So just upon researching it, we're like, okay, this isn't necessarily something he can take some vitamins and get a vaccine and be done with it. He would, you know, we would have to actually learn how to 00:24:06.31 Tom Rajan work around these constraints that are now in place and we have to fully understand the depth and breadth of these constraints. 00:24:16.59 Jala So, Ollie, how about for you? 00:24:18.54 Ollie Yeah, so just the way Tom was talking about it, and just written what what you've written out there about the average age of speech onset is 36 months for autistic children. i And I think that a lot of autistic parents, and in particular myself, I think Tom speaks for a lot of us there. 00:24:38.09 Ollie The children usually do have words and they will pick them up. And what what happens with autistic children a lot, and again, it's a disorder so it doesn't happen the same for everybody, is you get what's referred to as a regression. And a regression is where they lose some of the skills that they've picked up. 00:24:56.61 Ollie So as a parent and a parent of an autistic child or a parent of a neurotypical child, you're constantly comparing them, what what I refer to as milestones. And oh, they've hit this milestone. So first time that they rolled over onto the belly, first time that they sat up, the first time that they crawl, the first time that they said a word, et cetera. 00:25:14.53 Ollie and there are like, I was going to say there are goals, right? They're not really goals. It's like, when did this happen? And then you mark it down and you can compare it with the average child. And in Dolan's case, he was with in line with the average child or ahead of them for pretty much all of those goals, with the exception of forming a sentence. But he had those individual words. And there was one little book in particular called Nine Naughty Kittens that I used to read to him. And he would love me reading this particular book to because it's it's written in a style that and as Tom had said with the ready set go that encourages the child to say the next word. 00:25:55.66 Ollie So I'd be coming along and I was like, who's this under the pile of sticks? It's, and then don't wanna be like Jasper. Jasper's the name of one of the kittens. And he would be super excited about this. And then when he was about, I think he was, so he was around about 19 months, just coming up on two years, just short of two years, when suddenly he wasn't saying Jasper anymore. 00:26:15.53 Ollie And it was one of those things, cause it's a turned, it's like a flip book where you're you're on the page and then you reveal where Jasper is. 00:26:15.90 Jala Yeah. 00:26:23.21 Ollie And he was still excited to get that reveal, but he wasn't saying the word anymore. 00:26:28.04 Jala Mm hmm. 00:26:29.39 Ollie And I remember sitting with Moyer because we had videos of him doing that when he was, you know, nine, 10, 11 months old. And now he's 19, 20 months old, so a year later, or ah the guts of a year later, and suddenly he's not doing it anymore. 00:26:44.48 Ollie But he's still excited about the fact that it's turned. He still gets that big smile and he's still laughing at the the Jasper picture, but he's not doing that stuff. 00:26:53.13 Ollie So at that stage, we start thinking, okay, right. And then the milestone started to drop off and he was behind. So where he was, should have been doing something at 21 months. 00:27:04.94 Ollie he wasn't, he he he he was like completely behind two, three, four, five months he starts falling behind. So because the two of us are educators, Maury herself works in, that's my wife, my estranged wife, but she works in a special needs school. So we took him and got him assessed. So he got diagnosed at 24 months, so just about 23 months, so two years. and And that's like, that sounds like it's very early to diagnose him. But again, when you have two parents who have experienced this, like I've taught children with ASD and Maury's taught children with ASD, 00:27:40.15 Ollie it was easy enough for us I think maybe to spot the signs and his regression was so noticeable that it really jumped out to us so not just losing a few words he lost pretty much all of the words he had at that time so yeah and it was one of those things where and right now we're going to talk about later on how did it feel when you get that diagnosis but I mean 00:27:43.93 Jala Mm hmm. Right. 00:28:04.12 Tom Rajan Yes. 00:28:04.35 Ollie did now it's It's not often I use the word devastating, but that is the kind of result that you get when you're sitting there. If you've ever seen the first episode of Breaking Bad where Walter White is sitting and the doctor is talking in the background and all he's hearing is a high pitched whine, that's how I felt walking out of that room. 00:28:25.91 Tom Rajan And yeah, that is 100% the viewing you get when that comes down like that. 00:28:36.34 Jala Right, right. So yeah, um I don't know if you want to talk about the feelings now since you started or if you want to just leave that for a little bit later. 00:28:44.27 Ollie Oh, we can come back to it. 00:28:45.58 Tom Rajan Yeah. 00:28:46.35 Jala Okay, okay. 00:28:46.66 Tom Rajan Yeah, we can move back to it. Sure. 00:28:49.06 Ollie give us some time, Jala. 00:28:50.76 Jala Okay, well then i will I will speak in my upbeat voice about possible causes. 00:28:51.59 Tom Rajan Cool. 00:28:56.74 Jala Read some more notes, give you all a breather. So um science has no definitive answer at this time as to why this occurs. ah However, a 2019 study reports evidence that nonverbal and minimally verbal autistic children may have differences in how their auditory or hearing cortex processes information. 00:29:18.32 Jala This study found that nonverbal and minimally verbal autistic people show delayed responses to auditory tones compared to verbal, ah autistic, and typically developing people. While the verbal autistic children had some time delay, the difference was most pronounced in the nonverbal and minimally verbal groups. Time delays were connected to weaker language ability. 00:29:41.74 Jala So other things, non-speaking autism may also occur because that person has apraxia of speech, a disorder that affects certain brain pathways. It can interfere with a person's ability to say what they want correctly. It may also be because they have not developed verbal communication skills. Some children may lose verbal skills as a symptom of the condition worsening and becoming more noticeable. ah We already kind of talked about that. 00:30:09.34 Jala ah Some autistic kids may also have echolOlliea, which causes them to repeat words or phrases over and over, and it can make communication difficult. so um That's some of the stuff that the that science has to say about different possible causes. so the Basically, the newest thing that I could find was a 2019 study talking about the auditory ah cortex and how that might be interfered with and that might be causing it. 00:30:39.44 Jala at least to in some cases. So, of course, ah science doesn't really have a real answer to, you know, how autism autism and general ASD, you know, like what to do with it. You know, like there isn't, ah it's not like ADHD where they have medicines that can kind of um help curb symptoms and things like that. Sometimes ADHD medicine is given to people who have ASD to help with some of their symptoms and stuff. But, you know, most of the time it's just therapies. 00:31:08.81 Jala and things that are used. um So, yeah. ah Since neither of your kids speaks a whole lot, I guess none of these other things really ah apply, like the the having a problem trying to say what they want, you know, say the correct thing or um repeating something over and over again. I guess neither of your kids do either of those things. 00:31:36.40 Ollie Well, yeah, well, go on, Tom. 00:31:36.81 Tom Rajan Well, what I'll say is my trade is very long. Oh, sorry, Ollie. Did you want to start? 00:31:42.45 Jala Go ahead. 00:31:43.44 Tom Rajan yeah Yeah, so what I'll say about Micah is that as he's gotten older, the one thing he is, and I'll kind of start by saying, he's a movie buff. He loves watching movies over and over and over. And what he will echolate on will be lines from movies. Like for an instance, right now he's really big on watching Moana. And so he'll watch it and then there'll be random times in the house where he's walking around and if he's frustrated with something I'm doing or he's doing, 00:32:14.13 Tom Rajan He borrows a line from the movie where Moana was frustrated. The ocean shows me. And so he'll say that, and it's broken up. It's not necessarily enunciated correctly, but it's clear he's repeating a line. 00:32:28.22 Tom Rajan So there is you know moments of echolation with Micah. 00:32:28.29 Jala Mm hmm. 00:32:32.02 Tom Rajan It manifests itself with these repeated lines. There's a line from Hotel Transylvania where Mavis is asking for her son. Give me my son. And he would just say that. 00:32:42.61 Tom Rajan at random points throughout the day. So when he does pick up certain lines, he'll hell repeat the words and in some cases it's actually appropriate context for what he's looking for ultimately. 00:32:56.00 Jala listen Well, that must be kind of um an interesting kind of ah way to try to figure out what he wants because he's trying to tell you, trying to convey that through a line from a movie. 00:33:09.28 Jala So you have to memorize, like, I mean, I'm sure you've memorized every single line because you've seen it too many times and heard it in the other room too many times anyway, but um like to have that context and then be able to piece together 00:33:15.38 Tom Rajan Yeah. 00:33:22.26 Jala um the puzzle to figure out exactly what it is that he's needing in that moment. 00:33:27.53 Tom Rajan Yeah. And I mean, it's it's a clever workaround. If that is exactly you know what he's doing in that case, he understands a circumstance where a character that we both recognize was in the same situation, and that's how he can convey the message across. 00:33:30.90 Jala Mm-hmm. 00:33:43.70 Jala Mm-hmm. That's pretty interesting. So, Ollie, ah you had something too? 00:33:48.19 Ollie Yeah. And I would, yeah, I was just gonna say that I find with Dolan, when you were saying that, he so he's nonverbal and, or mostly nonverbal, so he doesn't repeat words, but he will attempt to repeat a phrase. It just won't be the phrase that he's saying. So for example, um when I was a little kid, all of us in our house, I remember my dad used to bounce us on his knee and like repeat this little rhyme right into the fair on a wee black mare, giddy up, giddy up, and then he'd drop you. 00:34:15.37 Ollie And Donal has loved that since he was a kid. 00:34:18.50 Ollie And now he he can walk up to me, and if he's trying to convince me to do that, he will say something that approximates riding to the fair. 00:34:26.32 Ollie And he will say it until I reOllieze that that's what he's asking me to do. 00:34:29.94 Ollie Now, he's not saying riding to the fair. 00:34:30.02 Tom Rajan Yes. 00:34:32.59 Ollie but it might sound like guiding Ag out there. 00:34:35.19 Ollie And he he'd say it and he'd knew he'd reach up or whatever. And then I'd eventually go, oh, oha he wants to ride into the fair. So I'd pick him up and I'd do it. Or we're in we're in the car there recently. And he he started like, I swear, like one of those things where you're like, it takes you a while to figure out, but he was trying to sing nine to five because he wanted me to put on some Dolly Parton. 00:34:55.49 Tom Rajan but 00:34:56.14 Ollie And like I could hear him in the back and I was like, that sounds, whatever noises you're making done, that sounds eerily familiar. And then it twigged me. Do you know when something just like twigs and you're like, Oh, it's nine to five. 00:35:06.92 Jala Mm hmm. 00:35:06.94 Ollie So I figured out what CD nine to five was on in the car and let's stuck it into the CD player. And yes, as soon as nine to five came on, he was like, he's lovely. 00:35:17.47 Ollie He's in the back clapping away and singing away, singing away to him. So even within. the lack of communication that they have, Donal is able to, or he will still, at you know, display some of those symptoms that we're talking about. 00:35:34.16 Ollie But then I was just going to say Tom, when you, when you first got the diagnosis, um, and we have like, so Giles written down, science has no definitive answer. Did you, did you guys go looking to see if there was any other sort of possible explanation? 00:35:48.09 Tom Rajan Absolutely. 00:35:49.38 Ollie Mm-hmm. 00:35:49.61 Tom Rajan Absolutely. We started investigating everything immediately. Ezra, my co-parent, she immediately started looking into all of the prenatal vitamins she was taking and She put it on herself to say, I took these over the counter prenatal medicines. That's what's going on. There was a lot of different stressors going on in that time when we were having my god um her mother broke her leg. And so she was in the hospital a lot helping her mother out and coming home. And so she put a lot of um you know emphasis on that. 00:36:25.91 Tom Rajan We were going through our whole marriage process and getting to know each other as a married couple when we were pregnant. So she put a lot of it on that as well. I was looking into different diets. I was checking the paints on the wall. There were so many different things that I immediately tried to look into to say, okay, what happened here? And, you know, the more and more I look at it, I can't necessarily point at one thing to say, that's it. But again, I don't think there isn't. 00:36:56.00 Tom Rajan No. 00:36:57.05 Ollie yeah ah Yeah, that's the exact same thing. So ah i so I am a scientist, or I mean, now I'm an educator, but that that was my primary mode of of of college, whatever, was was learning about science. 00:37:10.80 Ollie I was gonna say, it unfortunately, I enjoyed every minute of it, but unfortunately, I was a theoretical physicist. So it doesn't really stretch to the old ah neuroscience department, right? 00:37:19.62 Ollie But as a scientist, you start trying to find ways, The level of arrogance that I was, oh, well, my son's autistic. 00:37:30.27 Ollie Well, we'll fix that. 00:37:32.30 Tom Rajan Yes. 00:37:32.37 Ollie Or we'll get to the bottom of this. Let's science the shit out of this child. Like, and yeah. 00:37:37.99 Tom Rajan That's, you know, I, yeah. 00:37:41.47 Ollie All the research, as you said, what's what's in the paint? what what are we What are we eating for breakfast? Do you think it's too much cheese? like Genuinely, these were thoughts that were going through, and you'll find yourself researching just about everything. And again, as somebody who who works in the science field, and I have lots of friends who who who are in still in research departments at the minute, and I was going into i mean like great levels of detail. 00:38:05.57 Ollie trying to figure out anything which might have caused this. And I remember, and for anybody listening, I want you to understand that this is just what I was going through at the time. And I in no way want to belittle or diminish the lived experiences of anybody else. 00:38:15.47 Tom Rajan Absolutely. 00:38:20.84 Ollie But I remember sitting down and having a conversation with a friend of mine who's a neuroscientist. And the two of us were like, well, you know best case scenario, he could just be deaf. 00:38:30.91 Ollie like That's the level. that you're at where you're you're you're trying to find an alternative diagnosis that is still, yeah, exactly, that might have got this wrong because if because in your head you're thinking, well, if he's deaf, well sure, we can we can we can see about fixing that. 00:38:41.46 Tom Rajan Maybe someone got it wrong. Yeah. 00:38:54.27 Jala Right. 00:38:54.75 Ollie but you can't with ASD. And as I said, when you see something on the tip page and it's somebody who has lived science his entire life to see science has no definitive answers, it is one of the most frustrating things to just look at that sentence and go, yeah, that's 100% correct. 00:39:12.97 Jala Yeah. Well, and part of that is because if you're a parent, you are, you you love your child. 00:39:14.62 Tom Rajan Yeah. 00:39:20.29 Jala And so when your child is born, you want the absolute best for them and you want them to have, you know, just the the best, highest quOlliety life that they can. And you, in your head, when you're pregnant, you're thinking, oh, yeah, like ah my baby is going to be the best. This is going to be the best. and And, you know, like you're picturing them in this this way, like you have this ideOlliezed version, right, that you're expecting, because that's what everyone in society teaches you to expect. Right. And um 00:39:51.82 Jala So you have this this vision and you have this intention of what you want to do and what you want for your child. And then when that's turned on its head and you get a curve ball and then you're like, oh, well, this picture, this anticipation that I've had, these thoughts and these feelings and this trajectory that I thought I was on this whole time is now swerved. I got knocked off of that path and I'm in the weeds now trying to figure out where I'm going because I don't know what's happening anymore. 00:40:21.14 Jala um and now i'm in a bramblebu what is happening you know um it's It's a natural process to have that sense of disbelief because like if even and if it wasn't about your child, if it was about something else, some ground-shaking, earth-shattering kind of thing that you just you got a bomb dropped on you about some something, you know to about anybody close at hand that you care about or anything that is important to you or yourself. You you get some information about yourself that is a big bomb dropped on you. 00:40:55.31 Jala um It's the same kind of feeling, right? 00:40:55.51 Tom Rajan Yeah. 00:40:58.03 Jala um When I got my cancer diagnosis the first time, for example, i yeah I was scared shitless, and that's the same kind of feeling I'm sure that it felt like for both of you when you had you know this diagnosis, and it's not an apples to apples at all, but you know it's that kind of, oh my God, you hear these words and then you kind of panic, because you're like, I i don't know. 00:41:04.86 Ollie Hmm. 00:41:20.47 Jala you know like there's There's a ah lack of information at that time. And of course, the first thing you want to do is research and go, okay, what's the best case scenario? What's the worst case scenario? What could have caused this? Like when I got my cancer diagnosis, I had just finished running my first marathon and I was ah just certified as a Tybo instructor, kickboxing instructor. And, you know, was in eating all the stuff that I was making at home and and I was living really cleanly and and everything. And I was super, you know, for all intents and purposes, super healthy. 00:41:52.35 Jala I accept I had cancer. And, you know, so of of course, it's like, well, my dad smoked all this time, you know, even though that's not lung cancer, maybe it's something to do with, you know, whatever. And you end up, um you know, like the the type of cancer that I had, in fact, had a very specific cause, which was ah easily traceable. So when I found out that information, I did learn the cause. But um You know, like that's a natural process is is what I'm trying to say. 00:42:18.78 Jala This is not y'all having a fault or anything for doing some research and trying to see because I mean, Tom, in your case, especially your first doctor didn't even give you the right information about your son. 00:42:31.39 Tom Rajan Correct. 00:42:31.96 Jala So like, of course you're going to be like, well, I don't know. I really need to double check everything and I need to see what possibly you know, what else this could possibly be. 00:42:43.51 Jala You're WebMDing it. 00:42:43.53 Tom Rajan There you go. 00:42:44.46 Jala I mean, like, you're not a doctor, but you're gonna WebMD it. You're gonna look it up. 00:42:48.14 Jala You're gonna try. You know, even though WebMD didn't exist back then, I don't think, but, you know, whatever. So, right? 00:42:55.33 Ollie We could always ask Jeeves, he was ah he was the doctor on the side like 00:42:57.23 Jala Ask Jeeves. That that was around. 00:42:59.07 Tom Rajan Nice. That's why it goes this. ah Yeah, the one thing that I recall specifically is, you know, like I come from a very Christian background, um you know, very much of a churchgoing woman. 00:43:02.57 Jala Right. 00:43:12.55 Tom Rajan And my mom just in tears praying, why, God, why are you doing this? And I remember just thinking to myself, this is not productive to try to place blame there. 00:43:26.57 Tom Rajan Let's go and try to find the science aspect of it. and You know, let's, let's do that. And again, it was just kind of a goal of just protecting myself and protecting my psyche. If I can find something logic and tangible, I can take away this feeling that, you know, this is, this negativity is coming because of some past sin in life. And that's kind of where part of my journey was too. It's also, Hey, if I can figure out what's going on, I can absolve myself of any kind of guilt of the situation. 00:43:52.91 Jala Right. Well, and so um like I mentioned before, people in Dave's family and people in my family both um ah are, they they have different types of neurodiversity. um On both sides, there is some ASD. The ASD in my case was married into the family. So um what my my side has is ADHD and OCD. 00:44:18.45 Jala yeah And I display some symptoms of both of those, but not ah enough to be actually one of those. um But ah so one person ah in in the families had a couple of kids who both you know um had different situations, different and neurodiversities and stuff. 00:44:42.49 Jala And because of this, one of the raw draw upset you know feelings that came out was ah just like this honest, you know like this this fear out of fear, like this is before um you know research was done and and kind of like grappling with the emotions was had, but the first feeling, the first thought was, can't I just have like a normal kid? 00:45:09.44 Jala And that that was the thought at that time. 00:45:13.87 Jala and the thing is is that like as you know that sounds bad right it's it is it's it's ableist you know to say that but at the same time that is that because of those expectations that you have when you 00:45:23.90 Tom Rajan yeah 00:45:29.41 Jala you know, go through this whole process and are having a child, you know, and again, those those expectations get subverted, they get turned on their head, and now you have different situations that you have to deal with. You know, there are a lot of feelings, and that's just a raw, open, honest feeling. And of course, that's not how that person feels anymore. 00:45:50.20 Jala You know, um, you know, they love their, their kids very much. And, you know, like that's not the situation now, but if the immediate knee jerk reaction, you know, like that, that was, that was a kind of like a learning character development moment, I guess, but like, it's, it's, it's a raw place, you know, it's a real, raw place. 00:46:09.71 Ollie the the blame game is a very easy thing to settle into and a lot of times it's not the parents themselves who will do that it's extended family and i remember like i've fallen out with cousins because after don't got diagnosed and i just happened to be at home visiting my mom with don 00:46:14.11 Jala Mm-hmm. 00:46:19.28 Tom Rajan yes 00:46:28.71 Ollie And my cousin was there and was like, well, we don't have that in the family. It must come from hers. And I very, as within half a second, i'm I'm not quick to anger. 00:46:33.35 Tom Rajan Yes. 00:46:37.69 Ollie I never have been. I'm a very, very calm person. I so just said straight to my mom, ah right well, either I'm leaving or they're leaving because I'm not sitting in the same house as this person. 00:46:47.14 Jala Right. 00:46:47.22 Ollie because as much as I said, myself and my wife are separated now, my wife is a lovely woman and it's not her fault that my son has autism. 00:46:55.24 Ollie And it's not her family side and it's not her genetics and it's nothing like that. And it is not, yes, it can increase the percentage chance, but it is not a guarantee and it is not linked to that. 00:47:07.52 Ollie And this idea that, oh, well, it's that side of the family. 00:47:12.61 Ollie or it's caused by this or oh you know they ate a lot of Chinese food when she was pregnant or he was out of shape like this idea that out of shape people are more likely to have autism again it's not true there is no fact in this 00:47:18.53 Tom Rajan Yeah. 00:47:28.93 Ollie There's no links, there's no scientific proof of that. But this is the old wives tale that people will have been sharing for 50, 60 years. So it still it still gets passed around. 00:47:39.39 Ollie And I think it's very important. So for anyone who's a parent of an autistic child, I'm sure you've gone through this. 00:47:44.13 Tom Rajan Yep. 00:47:45.46 Ollie just nip that in the bud as soon as it starts because it is it's counter productive for everybody's happiness and it will just start eating away a particular I'm glad that Moira wasn't there that day because she would have started blaming herself so you can't have that and yeah I said 00:48:01.76 Jala Oh my gosh, yes. 00:48:07.98 Ollie marriage is separated and broken down, whatever, but it's not because of that. 00:48:11.91 Ollie And people need to understand that thoughts like that or passing the book or suggesting that it was linked to one person's decisions or or one thing that one person did is, you know, 00:48:26.02 Ollie I'm trying to use a ah word that won't get the podcast cut off the radio. So let's just say it's it's the behavior. That is the kind of thing that an asshole would say. And that will tell you how bad the other word I was going to use is. so 00:48:39.41 Tom Rajan Yeah. 00:48:41.14 Jala Right. Well, and and here's the thing too. What is that? That is ultimately um grabbing at straws, not having, because there it there isn't, science doesn't have definitive answers about all of the stuff related to ASD. So number one, that's grasping at straws. There isn't anything that you can confirm or deny about that. 00:49:00.87 Jala you know Number two, that's an oversimplification is what that is. That's oversimplification to an extreme. you know so But yeah, like in the case that I was mentioning, it was a self-blame game in that case. That feeling, that sensation um that that person was feeling at that time was, you know this is me. I somehow fucked up. I fucked up. 00:49:25.19 Jala You know, I did something wrong and I am to blame for this, you know, and and there's and that's that's partially the fault of society for teaching us that people who are wired differently, you know, it's not just that they are wired differently and they are, you know, fine and and dandy humans who are delightful as they are. 00:49:46.53 Jala It is because society tells you that that's not quote unquote normal. And because of that damn word, because of that damn word, a lot of people blame themselves and hate themselves for all manner of things, not even related to children. 00:49:51.43 Tom Rajan Yes. 00:50:02.55 Jala And we talked about that plenty on this show, but, but yeah, for sure. 00:50:10.03 Jala So ah let's move on a little bit to a section that I have on ways to communicate, because um although in the cases of y'all's kids, um you know, who are minimally verbal um and and they are, you know, you've already talked about how they ah communicate with you. There are nonverbal autistic people who can write and type and, you know, ah carry on and and do all all manner of other things. So again, that's like another expression of ah any particular way that a person is wired, you know even if they are under the same umbrella term, it doesn't mean that their experiences are are apples to apples at all. 00:50:52.43 Jala So ah different ways that folks who are nonverbal, umbrella term here, okay, ah communicate. Autistic people can still communicate even when they don't use spoken language. There's a range of augmentative and alternative communication or AAC options available. 00:51:11.12 Jala AAC includes any communication method that isn't talking, such as writing, drawing, facial expressions, gestures, pointing to letters to spell words, pointing to photos or texts or drawings, or using an ah electronic device to generate speech or to assist with communication in some way. There's also a bunch of different types of AAC systems. So a couple of these are picture exchange communication system or PEX, which allows non speaking or minimally speaking people to initiate communication using simple images that represent high frequency words or tasks. So users can use these to like point to 00:51:57.05 Jala and show them to others to convey what it is that they need or want in that moment. The images are on these little Velcro backed cards, and they're stored in a little binder. So they can just go to the binder, pull out whatever it is that they want to ah communicate, and then share that with whoever it is that they need to get that from. Another option is voice output communication aids, or VOCA, which is also called speech generating devices. 00:52:23.86 Jala And these are tools that produce digitized, which is recorded and played back or synthesized, which is computer generated voices to communicate for the non-speaking person. So their one example is touch chat. It's like an iPad app that uses ah the picture exchange like images and text in squares above multiple link screens or across multiple link screens. So the user can select squares to communicate and can build full sentences in that app that will then be read aloud by the app. There's also a speech language pathologist, which is a person that can collaborate with an autistic person in their family to help find the correct option or a the best option in that particular case, rather, for an AAC. So some autistic people use more than one, like elementary age students who can use both PECS and BOCAs. 00:53:21.50 Jala So um did y'all ever come across using any of these kind of AAC systems? 00:53:32.83 Tom Rajan So yeah, I'll go ahead and I'll start here on this one. So Micah did start off using packs and it was moderately successful at first. He was able to identify the cards and put them together and able to put initial thoughts together. And then around that time when he was in therapy doing that, he started developing a handful of words. So we were heading in the right direction. We did get him with a speech language pathologist. 00:53:59.82 Tom Rajan And we were working towards a lot of those types of communications and he was able to expand his vocabulary specific to item. 00:54:10.95 Tom Rajan But he wasn't really able to put the connectivity between, i you know, things outside of I want or that is a or, you know, very, very rudimentary pieces. So he's got words and he's able to define things after a lot of therapy, after a lot of speech therapy, a lot of utilizing tools such as Pex, but it never really connected beyond just the basic I want or I need from that point. 00:54:37.99 Jala Mm hmm. And Ollie, how about you? 00:54:42.32 Ollie Yeah, we we started with pecs as well, and what we discovered after a while was, and like again, this is, I'm assuming Tom will have found something similar, is that Donal seemed to become frustrated with it, because I don't think that he thought he was the one having the problem with the communication. 00:55:04.85 Ollie I think he thought we were the ones having the problem understanding him. 00:55:06.16 Tom Rajan Interesting. 00:55:08.10 Jala Mmhmm. 00:55:08.79 Ollie And so as far as he was concerned, he was the most effective communicator of all time. And then he pointed something in in the pecs book. And if we didn't get what he wanted straight away or understand it, he'd be like, again, giving you that look of disappointment. 00:55:23.99 Ollie I'm pointing at the apple. How do you not know what I want? 00:55:27.28 Tom Rajan Thank you. 00:55:27.34 Ollie like That's the kind of response you're getting. And we find that that became very frustrating for them. So there's one that's not mentioned here. And then um i i miss I can't remember what the American equivalent name is. 00:55:39.35 Ollie But in Ireland, it's called love. And love is the Irish word for hand. So it's ah it's a series of very simple hand gestures and hand movements, almost like sign language. that ah you can use with people with intellectual difficulties and and autism to help them communicate. So we started with Pex. That seemed to be frustrating went to him. So we started trying to teach him love. And it was you know it worked up to a point, but again, if yeah you're a lot of people who have autism will also have dyspraxia, 00:56:11.50 Ollie which means that fine motor skills are not exactly their forte. And Donal stems or stims a lot with his hands. 00:56:19.29 Tom Rajan Yes. 00:56:19.35 Ollie Stems, yeah, he's in the science, technology and engineering department. 00:56:19.86 Jala Mm hmm. 00:56:22.36 Ollie ah he He stims a lot with his hands. So ah while he's in the middle of giving you a love signal, he'd also be stimming, which would make that became a very hard way to communicate. 00:56:33.39 Ollie So I think what happens with a lot of autistic parents and the autistic children that they've got is that they make some sort of uh conglomerate that is a mixture of all of the different things that you've tried over the years um so i said donal still will point at stuff he will still point at a picture and expect you to figure out what he wants from the picture even if it happens to be like there's a picture on the fridge that i'm sitting beside right now that's of the beach 00:56:51.85 Tom Rajan Yeah. 00:57:05.35 Ollie But it doesn't necessarily mean Don wants me to take him to the beach. It could just mean outside, or it could just mean park. 00:57:11.00 Tom Rajan yeah 00:57:12.32 Ollie So he knows that he's trying to communicate to me that it's time for Daddy to take him outside. But Daddy's sitting there going, ah it's an hour and 45 minute drive to the beach from here, Don. 00:57:24.56 Ollie It's a very hot day. I don't know. I don't know if we want to do that. 00:57:27.39 Ollie Normally it's a bit more planning, but I said, so it's a, it's a mixture of all of them. Now, a lot of the things that you've mentioned there, for example, the, the, the VOCA and the speech generating devices. um They're fantastic. 00:57:39.23 Ollie I've seen those in action, and it's it's like a whole new world for the people, ah in particular for the children. But they would usually be associated with people in the mid, ah what's referred to as mid-functioning autism, to be able to use something like the VOCA or the digitized speech products. 00:57:52.00 Jala Uh huh. Mm hmm. 00:57:56.73 Ollie But if they are able to, those things are incredible. with with how they can just up the communication game. And you see children who could barely string five words together suddenly coming out with a big long speech about how they enjoy standing in the bank. 00:58:14.44 Ollie And I've seen this happen. I like being in the queue in the bank with Mammy because I get to play with the pens. 00:58:20.87 Ollie And and this is this is from a kid who would point at an apple and just go, pair. 00:58:26.74 Ollie beforehand, but then they're they're they're able to communicate with people in class. 00:58:26.97 Tom Rajan Yeah. 00:58:29.62 Ollie And I said, if your child or if you're listening to this and you know somebody who that you think could use a VOCA, absolutely try and get it. And I know in the States, it's probably very expensive to get access to that stuff. 00:58:43.83 Ollie and But if you can, and it works for your child, it is life changing for them. 00:58:49.57 Jala Awesome. So ah when you're talking about mixing all of the former communication styles that you've tried, what that makes me think of is ah like for here in Texas, Spanglish, any mixing of languages or you know like a Creole, the Creolization process where you make ah multiple different other languages or you know ah pigeon speeches or whatever into their own kind of conglomerate 00:59:00.89 Tom Rajan Yeah. 00:59:00.91 Ollie yeah exactly 00:59:15.52 Jala thing. So um it's kind of like that. And I know that's not like the the exact term that I'm looking for here. like We're not looking for, your know your child has learned a creole. 00:59:25.70 Jala you know this This is not what I mean. 00:59:25.96 Ollie Yeah, exactly. 00:59:27.30 Jala But ah you know the the language lovers out there will be like, Jala, you have not studied properly in a while about language. You need to go back to reading language books. Sorry, I'm doing research for the podcast right now. 00:59:42.30 Jala So yeah, um Tom, is that kind of um what you find with Micah that you end up having like ah a kind of mixture of different ways that you've tried to communicate in the past or have you just settled on something else? 00:59:53.75 Tom Rajan there There's, yeah, no, I think that hits it spot on actually, you know, there's a bit of shorthand that comes into it because it's part gesturing, part communicating, part grunting, part crying, part you know, swinging his arms around, part grabbing his teddy who he's had his entire life, and and you're throwing him up in the air to express frustration. So there's a lot of different things, but I understand in that situation, no, he does not want refried beans, he wants pizza. 01:00:25.35 Jala Mm hmm. 01:00:25.58 Tom Rajan And never in those cases did he say, I don't want this, I want that. But just a combination of the words that he uses, the hand gestures that he make kind of leads to this. Now, would anyone outside of he and I understand that? Maybe his mom, maybe his little sister, but that's about it. And it's been become a shorthand because we're the people who communicate with the most. So he finds the shortest path to what he wants through us with those after it's in essence. 01:00:56.36 Jala Right, right. So let's kind of move on to talking a little bit about different support options and things. So there are some science-based approaches, including Applied Behavioral Analysis or ABA, Early Intense Behavioral Intervention, EIBI, 01:01:17.78 Jala treatment and education of autistic and related communication handicapped children. tea this too two There's two C's. Anyway, ah different types of therapies, speech therapy with an SLP can help you find a suitable AAC as mentioned previously, but they can also recommend activities you can do at home between sessions, 01:01:41.01 Jala There's floor time, it's an at-home support strategy where you sit with your child and provide single word labels for toys or objects that they're paying attention to to get them to hopefully communicate those words to you. In the future, learn those words. Music therapy with a credentialed therapist can encourage communication through musical expression. 01:02:01.95 Jala Animal assisted therapy, including service dogs for autism, can inspire engagement and gains in communication. This is supported by a 2020 study involving autistic children and trained dogs. ah There's also therapeutic horseback riding, which is called equine assisted therapy, and that may encourage social communication in autistic people as well. 01:02:24.83 Jala There's also educational interventions. Autistic children often respond well to highly structured and intensive sessions that teach skill-oriented behaviors. These programs help children learn social skills and language skills while also working on education and development. 01:02:41.44 Jala There's medication, but as mentioned, there's not a specific medication for autism, but some medications can help with some of the symptoms, including anxiety, depression, as obsessive compulsive personOlliety disorder. Also, antipsychotic medications may help with severe behavioral problems, and ADHD meds may help reduce impulsive behaviors and hyperactivity. 01:03:05.09 Jala There's also family counseling. So parents and siblings of autistic children can benefit from having one-on-one therapy, and these sessions can help you learn to cope with the challenges of non-speaking autism. 01:03:17.01 Jala So all of that being said, um are any of these things that have been, I'm sure some something in here has been tried by, if not all of them, by both of y'all. But yeah, speak to this, Tom, speak to us. 01:03:27.52 Tom Rajan Yeah. 01:03:31.94 Tom Rajan Yeah, so Micah, our first effort with him was actually putting him in ABA. So he was in ABA from what would have been kindergarten all the way to fourth grade. 01:03:43.10 Jala Mm hmm. 01:03:43.13 Tom Rajan So he was in ABA for a while and that probably had the most beneficial for, you know, efforts for him. He was truly making a lot of different progresses. 01:03:54.81 Tom Rajan He was able to get some occupational therapy in there. He was able to get some speech-language pathology. He was doing a really, really good job. The one thing that happened that kind of turned everything on its ear, and I'll be interested, Ollie, if Donal had a similar situation, the pandemic happened. 01:04:14.65 Tom Rajan And through his entire schedule, on its side because many of these locations had to shut down. Close quarter contact couldn't be done to kind of engage one on one was now off the table. 01:04:26.51 Tom Rajan Prior to the pandemic, we were getting ready to enroll Micah in the public schools. 01:04:29.58 Ollie Yeah. 01:04:30.67 Tom Rajan He had the skill set, he had tools, he had moderate conversation to where he could be in a special education classroom and he could perform. 01:04:38.14 Ollie Yeah. 01:04:40.37 Tom Rajan But when the pandemic happened, it's almost as if every single skill set he had learned was completely lost in the process. 01:04:48.00 Ollie Yep. 01:04:48.20 Tom Rajan So that is kind of what put us behind the A fall and put us back to square one. We had to rethink our strategy and then we had to do a bit more of a truncated ABA therapy. And then we just two years ago got him into public schools again. He's been doing fairly well in the programs overall with the sales program. He's, he's engaging. He's starting to learn things. He's starting to demonstrate behaviors. 01:05:15.50 Tom Rajan that he wouldn't demonstrate here at home, you know, eat other foods, he has like a, you know, a very different palette at home versus while at school, he will engage, he plays volleyball at school, that's something he wouldn't do here. So he has these skill sets and abilities, but he also views school as school, and views home as home. And I'd imagine that's the same thing you would have for a neurotypical versus well. So 01:05:40.04 Jala Well, it's also kind of a matter of like different people with different types. Neurotypes will do a lot of masking and they put their mask on when they're at the place that they perform their mask. 01:05:52.99 Jala So that would be school in this case. And then when they get home, they let their hair down, if you will. And then that's when the mask comes off and they are resting and they are no longer in that mode. 01:05:58.56 Tom Rajan Yeah. 01:06:02.77 Jala And so all of the adventuresome and, and you know, Behaving you know behaving in these certain expected ways all of that wonderful fun stuff kind of stops um you know, that's that's a kind of situation with ah Someone who is in my you know a writ large family um you you know who has like hyperactivity, you know and is is kind of um more challenging to keep up with and to calm down and keep regulated at home. 01:06:33.39 Tom Rajan Yeah. 01:06:34.54 Jala right ah But in a school setting does just fine. But that's because medication and that's because structure and masking. And then again, when they come home, that's a different kind of situation. 01:06:46.94 Jala And um you know that's when the hair comes down and the mask comes off. 01:06:51.66 Tom Rajan I think that's a very fair and accurate. and And again, it would kind of describe me as well in some capacity. So I completely get it. 01:06:58.84 Tom Rajan I would i would say that's accurate. within the context of Micah and his performance but at school and away from school. 01:07:07.43 Jala Right, so Ollie, how about you? 01:07:09.56 Ollie Yeah, so ah this is one of those things where this might seem like a a too long answer. So i I don't want to be be hogging the conversation. 01:07:16.18 Jala Oh, you you talk away, Ollie. 01:07:18.45 Ollie So one thing I will say is sometimes the internet's not your friend. 01:07:22.45 Ollie And Autistic parents will start researching out the wazoo, and you will live on the internet. 01:07:28.72 Tom Rajan Yep. 01:07:30.62 Ollie And the problem with the internet is, ah you mentioned it earlier when you were talking about gender identity and and gender in general, about how people try to stick things into binary. 01:07:41.99 Jala Mm-hm. 01:07:42.00 Ollie And if you go onto the internet, you will find, so if the three that are mentioned, ABA, EIBI, and TEACH, you will find people who say, this is the best thing that's ever existed. And then in the next check or link that you click, this is the worst thing that's ever existed. 01:07:59.32 Ollie And it's because it didn't might it might not have worked for their child. But instead of being objective and saying that this didn't work for my child, you're reading a ton of responses that say, this is bad for children. 01:08:14.02 Ollie And because parents are reacting, and again, it's an emotional response. If you see your own child upset, it's hard not to be in a forum somewhere saying, well, ABA just doesn't work because it didn't work for my child. 01:08:29.07 Ollie And then back when Don was first diagnosed, there was a lot of response to ABA in so much as people said that it was forcing the children down routes and it was being described as being like training animals, like dog trains. It was like and clicker training for your dog and stuff like this. And I remember reading this at the time and my wife read it at the time and we were horrified because we were terrified. 01:08:57.82 Ollie And we didn't want to be doing that. So we went looking for alternatives. And the one that we came across, and I'm i'm sure Tom has has come across this in some states as well, is called yeah ESDM. So it's the ah early start Denver model. And we went all in on early start Denver model. 01:09:14.40 Ollie to the point I said we were going over to the States to deal with it. Now you might think early start Denver model, we were going over to Denver, no San Bernardino in California ah for some reason, and because that's where the the autism institute was. 01:09:25.99 Ollie So we were bringing Donal over there and we were spending like quite a lot of money and we were getting training in this early start Denver model and how to deal with it and stuff. As I became more aware of what we were actively doing, ASDM, and I don't mean this in a bad way, because I don't think ABA is dog training in any way, but ASDM is ABA, just with a different set of rewards, as opposed to a food-based reward. 01:09:55.40 Ollie It's more of a praise-based reward, like social rewards, like, oh, you would get rewarded with a hug. 01:09:58.32 Tom Rajan Yes. 01:10:00.34 Ollie yeah Instead of, you get rewarded with a sticker on the fridge. for ABA and then the child, like the idea is you want the child to get happy about the sticker, you'd be like, oh, would you get rewarded by me saying well done and good boy or whatever it happens to me? 01:10:14.51 Ollie But they're the same thing. Like, they're like, it might be one's physical versus variable, but they're still rewarding a good achievement from the child. 01:10:26.83 Jala Mm hmm. 01:10:27.11 Ollie So as I said, it took us a while to figure this out. Now, while that was happening, we reOlliezed that early start Denver model as the name suggests is for children up to about four or five. So obviously Donal was going to reach a point where he was no longer four or five. So I went all in personally on teach. So the reason I was saying that I gave up podcasting back then is I started a master's degree in teach. So One of the joys and one of the benefits of being in education over here and being relatively well off, I was able to just go, right. So again, not all ah parents will be able to do this. I was able to just dedicate time. 01:11:10.99 Ollie in the evenings to studying this thing, thinking like genuinely, I cannot stress how arrogant this is going to sound. Oh, we'll fix this part. Like it's so stupid looking back, but like you think we will give everything we do will be the best of the best for this child. 01:11:20.38 Tom Rajan Yeah. 01:11:28.31 Ollie So I would be going into work and I'd work in the day and then I'd come home and I would spend five hours in online lectures and sit down and do exams on it. and Yeah, I passed it, got the degree and all this kind of stuff. 01:11:40.69 Ollie And all I can tell you is, Donal fucking hates it. and And all of that time spent was a complete waste of time because the teach models, what they want you to do, he just doesn't respond well to. 01:11:46.92 Jala Oh! 01:11:59.95 Ollie And that's again, not a reflection on teach because I think it's a really, really good program. But for my particular child, 01:12:08.16 Ollie It just doesn't work. 01:12:09.82 Ollie And he just doesn't enjoy it. And it's again, it's another, but like a a more ah advanced version of ABA basically. like But at the end of the day, you will try anything. 01:12:22.07 Ollie And Tom has probably tried two or three different ah things with his son. 01:12:26.78 Tom Rajan Get out. 01:12:28.11 Ollie And we, as I said, we were early start, then we were at ABA because we figured out early start and ABA were the same thing. Then we were trying to teach. We did a little bit of the early intense stuff. and after, you know, after trying the, uh, the early start and and early start sometimes can feel, you know, when you see children going to a Montessori school versus a typical elementary school and you think, Oh, well that's a little bit of messing around. 01:12:49.31 Jala Mm-hm. 01:12:52.15 Ollie Hmm. I'm not sure about that. The early intents is like old school primary school versus the ESDMs like Montessori school education, where it's not child led, it's adult led and stuff like this here. 01:13:03.53 Ollie But again, very similar. 01:13:06.13 Jala Mm-hm. 01:13:06.32 Ollie in terms of what you're actively doing, right? So I think a lot of parents will try all of them and different parts of each of them will stick. And it doesn't matter how much you try, sometimes it's just not going to work. 01:13:22.82 Jala Right. 01:13:22.97 Tom Rajan Yeah. 01:13:23.86 Ollie And that can be as frustrating for the child as it is for the parent in particular, for the non-verbal children like Micah and Donal, because they aren't able to tell you, well, Daddy, I'm not quite enjoying this. 01:13:39.54 Tom Rajan Yeah, this isn't fun. 01:13:40.91 Ollie This isn't fun. 01:13:41.37 Tom Rajan This isn't bad. 01:13:41.81 Ollie So Donal's way of acting out was he'd come up and he'd sit yes beside you, and then he would scratch the back of my neck. And that was his way of saying, let's stop this right now. 01:13:54.77 Tom Rajan Yeah. 01:13:55.03 Ollie Now, I don't know where he learned that from, but but I can tell you, it's incredibly effective. 01:14:02.45 Tom Rajan My chat will go ahead. 01:14:03.11 Ollie Because, yeah. I don't know if you want to hit them. 01:14:05.33 Tom Rajan Go ahead. all Yeah, so Micah actually does something similar. 01:14:08.73 Jala No! 01:14:08.85 Tom Rajan He'll grab my hand and bend the finger backwards. He tries to bend it as far as it can go. 01:14:13.88 Ollie okay 01:14:15.09 Tom Rajan And I'm like, buddy, it's not supposed to bend that way. 01:14:18.22 Tom Rajan And so that's how he expresses that. So when you said scratching on the back of the neck, I was like, Yep, I know exactly what that is. 01:14:28.78 Jala Right. Right. It's kind of like, um you know, um think about it like if if you want somebody to stop something and you aren't able to speak to them to tell them that you want them to stop, what would you do? 01:14:43.78 Jala You would give them some kind of a physical sign that, you know, a discomfort that is equal to the discomfort that you are currently feeling. Right. So that they can get get the message that you are not comfortable. 01:14:54.84 Ollie Yep, very effective. 01:14:55.75 Jala So that's what that is. Mm 01:14:58.60 Tom Rajan Absolutely. And it's one of those where if the opportunity allows them, like, okay, buddy, we're done. But, you know, sometimes if you're at the dentist, the dentist is still going to have to look at your teeth there, bud. so Sorry, you have to, if you have to break the finger, break it buddy, I get it. 01:15:16.31 Ollie Just in in relation to the therapies you've you've mentioned here. So for example, speech, therapy, SLP or speech and language therapy. um I think it's it's a very effective thing. 01:15:26.57 Ollie But again, there's a high likelihood if you've got a nonverbal child that it's not going to work. And it can then also again become frustrating. Floor time is similar to pecs in as much as you're putting single word labels on them, but a nonverbal child will end up just pointing at the thing anyway. 01:15:43.90 Ollie So they they're going to work around their inability to to communicate in your normal way. Music therapy, animal-assisted therapy, therapeutic horseback riding. All of those things in moderation are fantastic. 01:15:54.95 Ollie like So Moira and Moira's ma'am, they're traditional musicians, so like ah as in trad music in Ireland. So just picture you're watching Titanic and they're down dancing in the barrels of the ship, that type of music. 01:16:07.49 Tom Rajan Yeah. 01:16:08.03 Ollie right And for for myself, classical piano is what I grew up with. fool not not my Not my cup of tea, but at the same time, don't really enjoy listening to that in moderation. like I couldn't put that on for an hour, et cetera. And with animal therapy, we had a dog, a wonderful therapy dog named named Murphy, who passed away there in and actually during the pandemic. 01:16:34.64 Ollie Now, he wasn't an autism dog. 01:16:38.04 Tom Rajan Yeah. 01:16:39.03 Ollie He was a care dog. So we used to take him around too. Like even when Donal was young, we used to take Donal with us as well. So he used to bring Donal into old folk songs. And Murph would just sit and let old folk pet him for hours. 01:16:49.86 Ollie like it was He was loving it. um Because all the affection that we were lavishing on Donal, he was like, well, I'm going to get some old folk to give it to me. And he would sit there and get petted. 01:17:00.90 Ollie But Donal loved that dog. and after Murph died because it happened during the pandemic, it was hard to get a replacement dog and now he still asks sometimes, where's the dog? 01:17:14.20 Ollie Like, where's the dog? And it's at this point, even though he's 10, I don't want to sit down and have a conversation about death with him because I'm not sure how he would react. So we we we haven't gone around to get a replacement, but eventually we probably will. And again, I think it's important. And with therapeutic horseback riding, yeah, that's super expensive. 01:17:37.66 Tom Rajan Yeah. 01:17:37.99 Ollie And there's no other way to describe it. You can probably have three speech and language therapy sessions for the cost of one horseback riding lesson because the therapeutic stuff tends to be individual time because obviously they wouldn't want to load people there at the same time and they need to focus on them. 01:17:56.24 Ollie And only some of the animals will be trained specifically to deal with autistic children. So it can be super expensive. And the reason I'm bringing these things up is Not all parents will be able to afford all of these. 01:18:08.40 Ollie And it's not, you're not doing your child a disservice by not getting them an autism dog. 01:18:13.90 Tom Rajan Correct. 01:18:15.45 Ollie Autism dogs in Ireland, i I can tell you for a fact how much they cost in Ireland, they're 10,000 euros. 01:18:21.62 Tom Rajan Yeah. 01:18:21.61 Ollie i So with that's like $14,000. I can only guess how expensive one is in the States where everything is the most expensive thing in the world. 01:18:27.57 Jala Mmhmm. 01:18:30.49 Ollie So you're not doing your child a disservice by not having an autism dog. and It's a lot of pressure on parents to try and feel like, oh, I want to get the best of the best of the best. And in a lot of these cases, in particular stuff like horseback riding, there's a limited appeal to that. 01:18:47.49 Ollie Yes, the child can have a great amount of time, but I don't think anybody can afford to be doing that twice a week or three times a week. 01:18:54.69 Jala Right. 01:18:55.15 Tom Rajan Yeah, definitely not. 01:18:55.51 Ollie It's just not realistic. 01:18:57.88 Tom Rajan And I would also, you know, just echo on there, kind of to your point, there is no magic bullet here. So thinking that, okay, if I just go get this one thing, it'll make everything better. No, it's a combination of many of these things. 01:19:09.95 Tom Rajan Again, we saw the most success with ABA, along with speech language pathology, along with, you know, the the education plan within the school district. So it was a combination of each one of those things that could maximize the results and kind of got Micah to the highest peak rate. 01:19:26.12 Tom Rajan So you know to your point, you know don't don't create you know don't don't be upset if you can, because this is you know incredibly expensive, but at the same time, don't be married to one idea of, okay, if we do this, that will resolve it. 01:19:40.70 Jala Right, because, again, um trying to put all of your eggs in one basket, if you will, ah is, again, is an oversimplification of the complex complexity of the situation sin and kind of like thinking in a binary. 01:19:55.89 Jala This one thing will be the one that will fix the thing and that's it. there Nothing else really matters. It's just this one thing. and getting getting set on one particular thing, especially it sounds like um in in a situation where you are the parent of, ah in particular, a non-speaking or a minimally speaking child, ah sounds like the worst idea. 01:20:19.22 Jala Don't ever get to see your heart set on a specific thing. This is what it kind of sounds like. 01:20:22.85 Tom Rajan Yeah. 01:20:24.28 Jala So ah kind of roll with the punches, understand that change is okay, and you just have to keep on going kind of thing. 01:20:33.07 Ollie Yeah. 01:20:33.91 Jala so So yeah, ah that wraps the actual like research stuff that I did, which means that I get to listen to more of y'all telling me about experiences and stuff. So we kind of already covered several of these different things already in the conversation, but um you know it we can talk a little bit more, sit a little bit more with it with ah how y'all reacted and how people near and dear to you reacted to you know the the news of the diagnosis or you know the different ways that things have panned out over time or what have you because ah the experience of the father will be different from the mother, will be different from the grandparents or what have you. 01:21:18.80 Jala So, um, you know, like what kinds of experiences came across that are particularly memorable to y'all. I will again, kick to Tom first. 01:21:31.00 Tom Rajan Yeah, so I remember the day I remember portions of the day and I usually have a pretty good memory on remembering things but this day I think part of myself just blocked my mind out because I was just distraught. 01:21:45.26 Tom Rajan We got the diagnosis and again my head mind went immediately to, okay what can we do to fix him? Not reOlliezing that he didn't need to be fixed. 01:21:54.52 Tom Rajan We just needed to manage the world around him. So that's where I was. I immediately went into planning mode. I went to WebMD. I started searching on the internet. I called up every single person I knew who had a resource and said, hey, it's time for me to call in a favor because I need you to help me figure this part out. So I was, I buried myself in information gathering and trying to find out what the best course of action is. Who do I know? Where do I know of them who would be able to contribute to 01:22:26.26 Tom Rajan creating a plan to get us through this. My wife, she you know she cried a lot during that time. you know At that time, he was she was very upset. 01:22:35.40 Tom Rajan She was very distraught. My mom, of course, she blamed it on, you know she she asked what sins we committed to lead God to do something like this. you know That was a whole conversation with himself. 01:22:45.19 Ollie Yeah. 01:22:47.49 Tom Rajan And so that was it. It was a lot of different emotions going around, but as we started gathering data and as we started thinking about what tools are available to us, we started putting together plans in action. You know, again, my my co parent at the time, she wasn't in so she was in school for nursing and she made the decision, okay, I'm going to change my major from nursing. And I'm going to go into behavioral analysis, because it would be more beneficial for me to become a board certified behavioral analysis. Because yes, as a nurse, I can take care of bumps and bruises. That's nice. 01:23:24.65 Tom Rajan But as a BCBA, I can truly help Micah transition. I can truly help Micah manage through everything. So that became kind of another thing as well. Our goal was to become as educated with the community as possible. So when we did get into the ABA therapy group, we got in very close with the board certified behavioral analyst, the BCBA that Micah was assigned to. 01:23:47.75 Tom Rajan they invited us to come speak on their behalf when they would go to Texas state legislature to talk about the needs of Medicare. So we were able to have those conversations. Whenever they had news clippings, they always asked us to be the volunteer parents because our goal was to be as articulate as possible in this and to be as much of servants to anyone else in this space. And so that's really what kind of my takeaway was in that space. 01:24:15.47 Tom Rajan we We took to action very quickly and very efficiently, and and we still maintain that for, you know, lack of a better term. we very much We're very much engaged with his learning process right now. He currently goes to a middle school right over here in the Houston area, and I'm constantly talking to the teachers. I'm talking to his paraprofessionary, finding out how his day was, what he's responding to, and that became kind of where it was. It started driving us to be a little bit more proactive versus, hey, how was your day at school? 01:24:47.05 Jala Right. So that's something that I wanted to ask as well. ah You were mentioning kind of being more open and active and helpful to folks in the community. So like, are there groups of parents and stuff that you were able to find to talk to about their experiences with their kids? Or, you know, is that a thing where there was like a community or do you just mean like the um kind of overall professional community of of the support network that you've got for his care. 01:25:21.49 Tom Rajan It was the overall professional network. We got in close with everything, but that naturally bled over to different groups. So one of the groups that were with, they had a a dad support group and I became a member of that and I joined their group me and we were sending text messages about some of the challenges of being a father with a child on the spectrum. And so that became kind of my secondary support while I was in this focal mode of saying, okay, let's just go and let everything out there for my kids where you can do that. So one kind of led into the other in that, if that makes sense. 01:25:58.62 Jala Right. Right. Makes absolute sense to me. So ah were there other things that you wanted to mention about those, like the reactions and stuff? Like you, I think you pretty much put a bow on it. 01:26:10.29 Jala You were like, well, now we're more proactive with what we're doing. And you know, you've got some supports in place for yourself as well, which is awesome because that was one of my, that's one of my concerns slash questions for, for both of y'all is of course, like what, what, 01:26:14.12 Tom Rajan Yeah. 01:26:24.89 Jala What's your care process for you in the middle of all this? But before we get to that, Ollie, how about you, reactions and and feelings? 01:26:32.40 Ollie What, as so as I mentioned earlier, it was devastating. Like just the idea, because you straight away go to worst case scenario and you're like, oh, Don's never gonna want me to hug him. 01:26:48.36 Ollie Even though Don is super affectionate, he's always been super affectionate. 01:26:48.42 Tom Rajan Yeah. 01:26:53.16 Ollie There's no reason for me to have jumped to that conclusion. and But still your brain does it. You're like, oh, he's never going to want to hug or he's never going to he's never going to be able to make friends and everything becomes worse and then at the very beginning as Tom mentioned it is a reactive process and it can feel like you think you're being proactive. 01:27:15.49 Ollie But the reOlliety is you're reacting to something that you don't know yet. That first six months, when you're still coming to terms with it, you're reacting to every minor little mistake or change in your child. 01:27:20.54 Tom Rajan Yeah. 01:27:29.57 Ollie like It's the worst thing that's ever happened. And again, it's one of those things I mentioned before. but being online where you you can go into a Facebook group and people are um very willing to talk about their lived experiences. But then somebody can mention something and you're like, oh my God, Don's got that. 01:27:48.49 Ollie um like Oh my god, that's where Don's going to be. And it can it it genuinely is a terrifying experience because you just it's just a natural thing to feel like you're going to have like so does a level of zero to 10. But Don's going to have 10 in this, and he's going to have 10 in this, and he's going to have 10 in this, when the reOlliety is that Don probably has two. 01:28:10.81 Ollie in one of them and six in another one and three in another one, but you're always thinking the worst. So that reactive time at the beginning, once you then start to get a handle on it, and I remember when myself and Moira started to reOllieze that it wasn't just the end of the world. 01:28:27.82 Ollie and that there were things we could do and there were ways we could work around it and there's ways that we could communicate with Donal and he wasn't some unfeeling and uncaring ah automaton that was just going to sit in a room and ignore us all the time. 01:28:43.40 Ollie Then we became, that's when we truly became to become proactive. That's when we started to put into place other things. ah Tom mentioned going to a parent support group. And now what I'm gonna say again, it might paint me in in a ah quite a bad light here, but I want you to understand that again, this was reactive when I was first diagnosed, or Donal was first diagnosed. I remember going to one of those. 01:29:08.82 Ollie And it was for for both parents and it was like a a chance to get out of the house and to meet new people. And I just remember coming home and myself and Moira describing it as, well, you know, that's just a trauma dump where people want to talk about bad things all the time. And I remember thinking, well, that's not useful and that's not helpful. And it's only as time went on that I reOlliezed, actually, 01:29:35.03 Ollie We are meant to be there to help other parents. We're meant to be there to support each other. 01:29:38.57 Tom Rajan Yes. 01:29:39.90 Ollie That's the whole point of the support group. You can't be an island in this. And if you try to be an island, you're not you're going to cause yourself so much stress. 01:29:50.09 Ollie You're going to cause your child stress. Those support groups are full of wonderful, wonderful people. And yes, every now and then, you're going to bump into somebody who's just an asshole. That's going to happen in every walk of life. 01:30:00.52 Ollie But the vast majority of them are full of really caring people who will give you advice. And it might not work for your child, but the next time you go, they're not going to go, well, it worked for me and walk off. 01:30:12.59 Ollie They're going to give you more strategies or they're going to pass you on to somebody else that can give you a strategy. So don't be afraid to reach out. You're not going to be a burden on those other people. 01:30:22.90 Ollie And that's one thing that a parents of any child with any sort of special needs feels, oh, I don't want to be a burden on people. I can tell you that when you're in the community, you're not a burden on anybody. 01:30:30.23 Tom Rajan Yeah. 01:30:34.70 Ollie so People support each other and they support the children and all we ever want is for the children to be happy and to succeed as much as they are physically capable. 01:30:44.87 Jala Well said, well said. So something that I wanted to mention that came to mind when you were talking, Ollie, is that initial phase when, again, like you just received the news and you are kind of panicking and terrified and are trying to scramble to research stuff and you are just doing nothing but reacting and all of that. Part of what's happening in that process is that you are grieving the idea in your head that you had for you know whatever whatever plans you had anticipated for you know your child or yourself or your future, you know all of that. you know You're going through a grieving process when that is happening. 01:31:27.44 Jala And you know like that's a really high emotional time. That's a time where you know like it's just going to cause intense intense stuff to happen. you know And that's something that people don't talk a lot about. And you know it needs to be like understood. like if somebody has a If somebody gets a diagnosis of of anything like that, so like if you find out something happened and somebody that you care about has some chronic condition or you know even a terminal condition or you know something something that you perceive as bad is happening to someone that you care about or to yourself. You have a grieving process. Again, i'll I'll go back to when I was diagnosed with cancer initially. 01:32:13.62 Jala there was a whole grieving process that I went through. And then there was a whole grieving process everybody else went through ah to where I had a lot of people who were messaging me as if I were dying at that time ah and telling me how wonderful I was and coming out of the woodwork, telling me this stuff like, you know, I better tell you now because I don't know how long you're going to live kind of situation, like overreacting, right? 01:32:34.48 Ollie Mmhmm. 01:32:35.98 Jala That's what every person does whenever they get some kind of news like that. 01:32:36.21 Tom Rajan Yeah. 01:32:39.49 Jala right So um you know again, it's not just in the case of you know having a child and then finding out this information about the way that they are wired and the way that they experience the world and how that's going to change your plans and goals and and way of approaching parenting with them. 01:32:59.07 Jala you know like That's a natural and normal thing. And, you know, it's important. and And I think, you know, I bet for both of you and for most people who ah come across this situation, I bet there's not really a lot of breathing room that you allow yourself because you're busy beating yourself up and scrambling for answers and trying to find alternatives and responding to everything. And you're just kind of like, you're already dragged out and exhausted from being a parent of ah a small child at that point, right? 01:33:30.60 Jala And then you have this extra stuff put on top of you while you still have to maintain some kind of a life and and a working career and all of that. you know um ah So stuff like having a therapist or having a support group or anything like that is really important to have because everybody needs to have their place to do their trauma dumping or you know ah airing these feelings and and getting getting it out some in some way, shape or form so it's not bottled up until it explodes. 01:34:04.31 Ollie Yeah, the explosion is ah is a real thing. 01:34:05.29 Tom Rajan Yeah. 01:34:09.14 Tom Rajan And, uh, you know, like you said, just, it's a trauma dump at certain points and you find things that are as far away from this to sometimes do it. You know, I mean, yeah you mean the how we know each other is through fitness, Muay Thai and weightlifting and all that stuff. 01:34:23.90 Tom Rajan That's probably what got me into many of the fitness things I do now is just, it's an escape. I'm able to go in there and not. 01:34:31.53 Ollie Yeah. 01:34:33.53 Tom Rajan think about these things and able to go and focus on, you know, the things that are just right in front of me when it comes to working out. So that was my response to it was to, okay, just bury myself in this, you know, I had other unhealthier habits, I would also engage in and happy to say those are no longer in effect anymore. But yeah, it's easy to get so lost into it that when you do have a chance to breathe, you're doing something just to take your mind off That's pretty much what I did. 01:35:07.08 Jala And I didn't think about it until just now, actually. But when I moved in with my parents, because everybody who listens to the podcast already knows by this point, unless this is your first episode, in which case, hi, thanks for listening. um I take care of my disabled immunocompromised elderly parents. 01:35:23.94 Jala And when I first moved in with them, it was a whole transitioning kind of situation. um ah Their idea of me and my idea of them were like outdated. 01:35:34.61 Jala ah Both of us, both them and I, we had all grown in different ways, but we were reacting and responding to each other as if we were still the same person we were back before I had moved out originally. 01:35:47.86 Jala you know ah So there was this updating process that happened. 01:35:49.82 Ollie Thank you. 01:35:50.14 Jala but ah Anyway, like when they started to have some health problems and they became really strenuous and i I was going in between the hospital and work and home and trying to take care of the other parent at home and take care of the dog and take care of the person in the hospital and do the work and you know make the house still run and all of that. and I started getting stressed out and you know I was the only person doing this work. 01:36:16.35 Jala Um, you know, it became a point where I, I had to grieve myself, you know, for the, the massive change in my life and how everything just kind of did get turned on my head for that too. Cause it's not, again, it's not apples to apples, but it is a caretaking situation in which, uh, there is an intensive involvement of you with the person that you are taking care of. 01:36:38.54 Jala and having to learn a whole bunch of new different things. um In my situation, my way of of kind of coping, my therapy, if you will, was to engage in endurance activities, the ultra marathons and the rucking events where I was doing rucking overnight for like 12 hours to 18 hours, actually, ah for some of them. 01:36:59.42 Tom Rajan Wow. 01:37:00.66 Ollie I don't like you talking about rocking because it remembers that it reminds me of the time I tried and it was not a fun experience. 01:37:06.27 Jala yeah Now, imagine doing that with the weight plate and all of the other kit in your bag, and then also carrying a jerry can with a sandbag on your shoulders for 40 to 50 plus miles and PT. 01:37:08.11 Tom Rajan Oh. 01:37:13.07 Ollie No thank you. 01:37:22.86 Ollie Yeah, nope. I don't want to you don't want to imagine that, Alan. 01:37:25.47 Tom Rajan I can't, I refuse to imagine that because my knees only take so much. 01:37:28.18 Jala so so Oh, I know, I know your poor knees. 01:37:32.43 Jala So yeah, but anyway, like my whole point again, being like, every situation has its own different resolution. Like I didn't, I didn't go to a support group for people who care for their elderly parents. 01:37:44.52 Jala Uh, that would have been an option for me. My version was to go out into the wilderness, into a situation where um My only choice was to move forward, and when you're out there and you're exhausted and you still have to keep going, um you get that understanding and that clarity of like what you know all the different worries in your head start to burn away because there's there's nothing to no energy to to afford for those things. right and ah You would just understand that no, 01:38:14.82 Jala it It all just comes down to these very basic things and you kind of re reset your priorities and stuff, doing all that. So um I think ah the objective of doing the fitness stuff. 01:38:28.55 Jala um it for you tom is a little bit different because to me and now you you definitely absolutely correct me if i am wrong i may be just 100 projecting here um it might be to a degree like yes you turn off your brain you have your zen time if you will but the physical exertion you know beating a ah heavy bag or pushing the weight and seeing the numbers go up and doing all of that you are training you can have a linear or a fairly linear progression ah you can get out some frustration by punching that bag or doing whatever um you know you are chatting with people and and you are doing whatever and like. 01:39:08.56 Jala You know, it's giving you a sense of control for yourself in your situation when everything else might be out of control, you know, or um not in your hands. You don't know what you're going to walk into when you go home every day kind of situation. 01:39:23.86 Tom Rajan I would say just kind of from my situation, it was a sense of accomplishment. Back then, you know, it wasn't lifting weights or a heavy bag. 01:39:29.45 Jala Yeah. 01:39:31.14 Tom Rajan It was, I was big into spin cycle class. I would go religiously for that. 01:39:36.24 Tom Rajan And so it was, okay, I'm going to grind out on this bike. And, you know, I'm not done until I hit 30 miles in like 30, 45 minutes. I'm just going to grind myself. And then when I was done, I was done. 01:39:47.44 Tom Rajan I was spent. 01:39:48.52 Tom Rajan I was exhausted. I was covered in sweat. And that was the sense of accomplishment. And I was like, okay, there's so many other fires to put out over here. The very least I got this one done. 01:40:01.47 Jala Right. that's That's still like that sense of accomplishment. That's again, that's kind of like a a sense of, you know that when you go into that room, it's going to be hard, but you can come out of that room and have a result that you were seeking when you first walked into that room. 01:40:17.34 Tom Rajan Exactly. 01:40:18.85 Jala So that's still, again, a ah kind of way of having a a sense of control ah over something. you know and And to have like ah an assured, this is a thing that I know yeah I put it in, I put my time in, I put my effort in, and then I get this out of it in exchange. 01:40:36.07 Tom Rajan It's a, it's a W no matter how I look at it at the end of it. 01:40:36.13 Jala you know Yeah. 01:40:39.68 Tom Rajan It's a W and I gotta take as many W. 01:40:40.46 Jala You walked into that room and what, yeah, you walked into that room and you did something, whatever that is. When you leave that room, that's more than you had before you walked in. 01:40:46.39 Tom Rajan Exactly. Correct. 01:40:50.81 Jala So, so Ollie, I'm curious, did you ever have anything like that that you were doing for yourself that wasn't like the support group or anything? 01:40:59.15 Ollie Yeah, so I i took ah and so it took up learning because I get very focused on if I can make myself better, I'll be able to make Donal better. 01:41:10.53 Ollie And that's what I got focused on in the wild. And then I needed something to take away from that. So around about the time you were rocking, Jada, I started running again, because I remember chatting to you about about time and and space. 01:41:18.66 Jala I remember. ah huh 01:41:21.15 Ollie Now, ah eventually my knees gave in, but I was i was back, at I think I was 37 at the time, 38. And I was running 5,000 meters faster than I ever ran in high school. 01:41:33.48 Ollie And I ran track in high school where I was 01:41:35.76 Jala Yeah, you were telling me your numbers. And I was like, I'm sorry, Ollie. i you You will outrun me, but I will outlast you. 01:41:43.09 Ollie Oh, you absolutely win. I have no doubt about that. That five times the meters I'd be crossing the line and going, right, I'm going to die if I go two more steps. But that was a fast five. but and So I was doing five Ks a lot and I was running every day. 01:41:52.82 Jala and Right? 01:41:56.53 Ollie So to the point where I would, I was doing two a day. I'd get up in the morning before my wife and before Don would wake up and I would go and run a fast five K. And then I. have a shower, give Dylan his breakfast, bring him off to school or whatever, I'd go and do my job and then after he went to bed, I'd go out for another run just to clear your mind because when you have like somewhere, said I think my fastest was 16 minutes or something like that and then my slowest would have been 30 and I'd do two of those a day somewhere between the two of those times but it was just so great to just have that 01:42:17.05 Tom Rajan God bless. 01:42:32.86 Ollie but the only thing on your mind because if you're pushing your body to the limit which I was and I reOlliezed afterwards when stuff started to break but when you're pushing yourself beyond normal you don't have time to think like and I assume that's what it's like in the my my Thai class where you're punching the bag and you're you're um you're practicing your knees and you're practicing grabbing somebody's head and clinch work and stuff that you don't have time to think about what's going on at home because there's somebody about to elbow you in the face and it really focuses your mind and I i find that any sort of physical activity now is the same so I've taken back I'm 43 now and I've gone back to playing football like soccer 01:43:13.64 Jala Mm hmm. 01:43:13.98 Ollie And I mean, I really shouldn't be because I'm 43. And I'm trying to chase something like last weekend, I was marking a guy who was 17. 01:43:22.16 Tom Rajan Yep. 01:43:22.61 Ollie I was like, all right. Yeah, i I literally very much could be your dad. and But it's one of those things where you're like, this is it's fun to push myself. And again, when I'm on that football pitch for an hour and a half, I don't have time to think ah about what's going on at home. 01:43:38.38 Jala Right. 01:43:41.52 Jala Right. And so I bring this up just because if there's folks listening who are parents of a nonverbal or minimally verbal child or um any other kind of situation that we're at the care taking is a little bit more intensive. 01:43:57.98 Jala or if that person themselves is is you know like deOllieng with caretaking of of other situations, like you know my situation, for example. um you know It's important to have both of those things. right like To have that community, that place that you can go to for advice, or just for a listening ear and an empathetic shoulder of somebody who gets it, right really gets it. And I don't mean like the the friend who doesn't have a situation like me. 01:44:26.79 Jala I don't have a situation and I can be sympathetic until the cows come home, but I don't know exactly what you feel or how it felt. 01:44:29.19 Ollie Yeah. 01:44:34.80 Jala and you know i I'm still never going to be able to relate to you the same way as somebody else who parented or is parenting a child who is in a similar situation? so ah Having that kind of outlet, right and like any outlet, like you even me, I could also be a good support person um just as as a general support, but um having that that ear or venting place or place to get advice and in reassurance, right ah but also having that place where you can turn off, 01:45:07.56 Jala whatever that means for you. you know Turn off and down regulate and get out of caretaker mode, even if it's just for a little bit, if it's 15 minutes, 30 minutes, whatever it is for you. 01:45:21.54 Jala So um moving right along. So we did talk about the supports and stuff. And both of you said that you tried a whole bunch of different types of supports. Are there supports out there that you've heard of that you would like to do but you haven't been able to try yet at all? Or you know are you pretty much like at this point you figured out what what works for your kid and you're good? 01:45:47.16 Jala Tom? 01:45:48.70 Tom Rajan Um, right now kind of putting some thought behind that. Um, I'd say the support groups that we have of have kind of operated just within the space. I know, um, you know, there's still a close fans and families just within our neighborhood that we communicate with. And it's actually, ironically enough, the parents of my daughter, Emma, her friends, those are the ones that have kind of become our new de facto support. These parents and these families, they they don't have kids. 01:46:18.83 Tom Rajan who are like on the spectrum. though All of their kids are typical in nature, but we still interact with them daily. 01:46:23.80 Jala Mm hmm. 01:46:25.59 Tom Rajan And so the support is less about, you know hey, they're empathetic to our situation, but also it is a there's definitely an opportunity to educate and they that we share the experiences with them as well as their children. 01:46:43.36 Tom Rajan and the real support from that comes from the fact that their kids are so much more empathetic to what Micah is deOllieng with and they're all now it's become a community you know Emma for the longest time is a very empathetic young lady and she takes care of her brother and she takes pride in the fact that she takes care of her brother now all of her friends 01:46:49.60 Jala Right. 01:47:05.34 Tom Rajan are helping out in that case. So if they see Emma's doing something to help Micah, they'll rush in real quick. So that became, it was not necessarily a traditional support group, but it was a support group in the sense that we're all in this together as a community, not necessarily we're in this because we share the same types of struggles. In fact, it's different. We all share different struggles, but we value your struggle in the sense that we value you enough to where we're going to make your struggle our struggle. 01:47:34.29 Jala That's awesome. Having that community support, like direct community right around you is really cool. So, so yeah, Aldi, how about you? 01:47:41.37 Tom Rajan Yeah. 01:47:44.98 Ollie Yeah, something very similar. 01:47:47.78 Ollie There's a group in the, I was gonna say the town where we live, but in the local area, but I say local area. For you guys, it's probably a neighborhood because America is so large. 01:47:59.49 Ollie But um like, I don't know how big Houston is, but I guarantee you ah where I'm talking about, oh, I have to try for 20 minutes to get to an event. 01:48:07.24 Ollie And you're like, well, which we still wouldn't be out of this city at the time. 01:48:09.36 Jala That's how far I go to my gym. Okay. 01:48:11.61 Ollie Yeah, that's what I mean. 01:48:12.36 Jala So Houston, by the way, is the third largest city in America. 01:48:16.90 Ollie Yeah, that's that's what I'm getting at. It's like the the distances you guys travel on and every day just, oh, I'm just going to drive this. And I'm like, oh, God, I have to get into the car and drive for 20 minutes. How annoying. But but so does there's a group called this ability, like THIS ability, and it's in the local area. 01:48:27.21 Tom Rajan What? 01:48:34.15 Ollie And they organize group events like um days down on the water park or days where they go for a guided tour through the woods and it's specifically for children like Donal in the area and it's I find those things fantastic and again it took me a while to come to terms with accepting that we should bring Donal to those things and and like I'm not even sure why we were reluctant at the time beyond worried that he'd pick up habits from other children like because Donal doesn't really have any 01:49:05.32 Ollie um behavioral issues. oh we were We were genuinely terrified. 01:49:07.98 Tom Rajan Sorry. 01:49:09.69 Ollie What if he meets a kid who bites and then he's going to learn to bite? you know yeah And you tell yourself as a parent, like these are all, again, worst case scenarios. But we started bringing them down to then. Just like Tom said, ah right ah and ah again, I'll couch this by saying that I work in education. 01:49:25.98 Ollie And I mean this in in the nicest way possible. A lot of children are assholes, but 01:49:33.05 Jala it Yeah, they are. 01:49:34.32 Ollie there They are also way more understanding of children with autism and additional needs now than children my age back in the 80s and early 90s when I was growing up everywhere. 01:49:42.28 Tom Rajan Yes. 01:49:48.78 Ollie And it's because it's in schools with them. And these children are in the mainstream classes with them. And they might have an SNA with them instead of instead of being taken out and put into what we used to refer to as a remedial class. So now they're there. And they so even though kids might be, again, assholes, I find that almost every child that we come into contact at a park or in any sort of ah external setting are so nice to Donal. 01:50:19.46 Tom Rajan Mm hmm. 01:50:20.03 Ollie They really go above and beyond to make him feel like him. Now, you I'm not saying that I haven't heard people asking what's wrong with that child. 01:50:29.99 Ollie And when you hear the word wrong coming out of another kid's mouth, you're like, well, there's some education about to happen here. 01:50:35.61 Ollie ah But But the reality is that they're not doing it in a mean way. That's just their way of saying to another kid in the park, you see that little boy over there? What's wrong with him, meaning what's different about him in comparison to us? 01:50:48.95 Ollie But I find that they have never said anything directly to him. They never point at them. They never laugh. And when he goes through like he loves being on swings and roundabouts and stuff like this here and he will giggle like a madman when he's having fun. 01:51:03.12 Tom Rajan yeah Enjoy. 01:51:04.48 Ollie And they don't. make jokes about him. 01:51:07.59 Jala Mm hmm. 01:51:08.45 Ollie You can see them. In fact, if anything, I find that neurotypical children enjoy seeing him being so happy. 01:51:14.30 Tom Rajan Yeah. 01:51:15.06 Jala Well, who wouldn't enjoy somebody having that much true unfiltered joy? 01:51:23.44 Ollie It just took us a long time to, we were genuinely worried he would get picked on or made fun of. 01:51:30.40 Ollie And then a lot of that was going around. I mean, thinking back to again, when we were kids, uh, well, you know, I probably would have made fun of a child like that back then. And I wasn't the worst kid in the world. 01:51:43.32 Ollie That was just the done thing. And we use words to describe people that if I ever caught one of my students speaking now, they'd never set foot in one of my classes. 01:51:51.92 Jala I have. 01:51:52.52 Ollie But but that was just commonplace to just throw them around back then. 01:51:53.41 Tom Rajan Yeah. 01:51:57.20 Ollie So once you come to terms with that and reOllieze that actually, yeah, bringing Donal out and bringing your child out to meet other children, is actually a wonderful experience. 01:52:08.61 Ollie And it took us a while to embrace that, but now I wouldn't replace that for the world. Like if there's a chance to get him out to interact with other kids, we are 100% there. 01:52:12.96 Tom Rajan Exactly. 01:52:17.65 Ollie I'd be there early to make sure he's ready to go. 01:52:20.23 Jala Well, and go ahead. 01:52:20.73 Tom Rajan And it's so yeah so yeah, it's so I kind of have a thought adjacent to this because again, you bring up the generations and I think of Micah's situations. He has a handful of nephews who are his age and you know, they're, they're athletic, they're playing basketball, they're doing all of these things, but they always make it a point to make their Micah somewhere nearby when they used to hang out all the 01:52:42.34 Tom Rajan And whenever I asked Micah, I'm like, Micah, how are you feeling? Again, this almost prompted I'd say, Hey, how are you doing? Where's what come out of that? I'm so happy. 01:52:51.80 Tom Rajan And I'm like, Oh my God, that's everything I wanted. Now, on the other end of the spectrum is the generation before who still look and ask questions and allow their allow, you know, just kind of what their, their, their, their knowledge and understanding to kind of feed into it. 01:53:08.54 Tom Rajan And they have the best intentions, but they're not necessarily praising things correctly or understanding the situation correctly. We have one uncle, older gentleman, love him to death. 01:53:19.35 Tom Rajan Every time he sees the us and sees Micah, he pulls me to the side and he says, has Micah's special ability come up yet? And it took me a while. I just 01:53:30.82 Ollie if I love it. 01:53:31.85 Tom Rajan he's talking about and I'm like, he's thinking like it's like Dustin Hoffman in Rain Man. 01:53:36.49 Ollie yeah I was going to bring that up at the end, but yeah, you're 100% right. 01:53:42.75 Jala In in the other neurodiversity episode, oh, oh, I'm and sorry. 01:53:46.67 Jala First, before I go there, Tom, you had more? 01:53:50.95 Tom Rajan ah no, just, you know, and again, I, he's coming from a place of good intention. So I know that I don't ever hold it against him for saying that. But that's where his that is that he always associated these types of neuro events as something that's eventually going to lead to Micah playing a concerto or being able to count cards in a casino or something like that, because that's how his that was his exposure to it. And, it you know, we just have to gently kind of remind them, well, you know, it may not happen. and That doesn't mean that anything is wrong with Micah. That's just, you know, this is the reOlliety of the situation. So go ahead. 01:54:29.11 Jala Right. So um first off, in the neurodiversity episode that was released before this one, um we covered a few different things, one of which was the whole like, you know, ah disability as a superpower or, you know, autism as a superpower in specific. That was a thing that was mentioned, but also, um you know, ADHD as a superpower to when the hyper focus kicks in. 01:54:54.02 Jala So, um you know, any of those things, because um also um on the disability episode that I mentioned previously with Lance, ah we had also covered the whole superpower thing because Lance, ah neither of y'all know, Lance, you're not acquainted, but Lance ah had an accident. He became disabled and he lost his hand in a very traumatic work accident. And a lot of people are like, oh, that means you can get a cool robot hand. 01:55:20.38 Jala And ah yeah he very, very ah passionately educated everybody about the the quote unquote cool robot hand and how ah how how it it really is to have um you know a device for that, right? 01:55:22.99 Tom Rajan Thank you. 01:55:39.66 Jala So anyway, um the whole kind of point being, um yes, it's been covered a couple of times on the show. I will definitely put both of those too, because I keep mentioning them ah in the show notes for folks to go check out. Links to those. But another thing that we mentioned, and this kind of circles back to the ah generation gap and how the newer kids, the younger kids are so much more understanding and some of the older folks, they might be well-meaning, but they have no idea what's going on really with the the situation. 01:56:08.01 Jala um We mentioned it, but the whole concept of neurodiversity was first coined in 1995. So our generation for for all of us being in our 40s, right? 01:56:24.46 Jala um So our generation, we were already like in in middle school, the equivalent of ah American middle school at that time when this would have dropped, right? 01:56:24.88 Ollie Mm-hmm Yep 01:56:35.52 Jala so ah Or we would have been even um possibly in the beginning of high school at this time. So either way, ah whole point being, So at that time, we had already had an entire childhood of people, not even knowing what it was and when it was first, you know said like whenever anything is a new concept is introduced, right. There's always a social backlash. 01:57:00.92 Jala Like um I see it shared every once in a while, but the whole um bisexuality thing on the Time magazine cover, ah like that gets showed shows up like every pride month, every pride month without fail that that makes an appearance on my feeds, for example, um where people were just so disbelieving of the concept that there could be, you know, something other than, you know, um you know the binary sexuality thing. 01:57:28.72 Jala um And ah so you have this backlash. So we're already in middle school. Nobody's ever heard of neurodiversity. And ah we talked about it, but like a lot of folks, and this includes some folks who are in my family, for example, 01:57:46.34 Jala um are people who would be highly you know disbelieving and scoff at this like, huh, no, that that's just made up BS. This is just some you know soft millennial garbage kind of thing. right And um dismissing it and saying, no, you just have to to deal with it. And we never had that when I was a kid and this, that, and the other. 01:58:08.53 Jala All of that kind of mess is the kind of things that you would hear from adults at this time. And a lot of adults who didn't know what neurodiversity was, didn't look into it. Again, this is like, 95 is like also when the internet boom happens. So people didn't really have computers and they didn't have, app absolutely didn't have internet. They were only just starting to do AOL and everything. 01:58:29.36 Jala um And computers were only starting to come around at this time. 01:58:32.85 Jala So they didn't have ways, is what I'm saying, to to have researched all of this, right? So the in the the combination of the way the world has gotten smaller through the internet and social media and the the various resources that you can come across to educate yourself on topics online, 01:58:51.18 Jala um And the the fast amount of books and audio books and everything that are available digitally at your fingertips now and podcasts such as this. um All of these different things ah coupled with the fact that now that it's not new people are ah getting accustomed to this is something that just exists and like granted there's plenty of people. 01:59:13.99 Jala out there who still scoff at this concept and and you know deny its its beliefs that you always have those weird assholes. right um Most everybody else is already on board with this normal doesn't really exist concept at this point. 01:59:23.44 Tom Rajan Yeah. 01:59:31.50 Jala and um you know so All of this to say, When we were growing up, yes, we were like that, that interstitial period, right? Where ah we got to see the before times and for the internet too. 01:59:44.72 Jala ah We saw the before times when people didn't have internet as small children, you know? 01:59:49.50 Jala And then we see what the world's like now. 01:59:49.89 Tom Rajan Yep. 01:59:52.30 Jala Similarly, We have also seen the before times before people understood the concept of neurodiversity. And now when it's it's still really new, given given like broad human spectrum of of timelines and everything. But like people are starting to get more accustomed to it. And the kids who are growing up now in Gen Z and Gen Alpha, you know, they are kids who are ah like understanding that people are going to be different. And that's OK. Like, you know, again, 02:00:21.40 Jala broad broad brush that I'm painting with here. But overall, like those generations are not being raised in the same environment that we were when we were growing up or yeah God forbid our parents or grandparents or whoever else. 02:00:25.19 Tom Rajan Now. 02:00:36.48 Jala So, you know, ah that's part of the reason why it's still such a struggle for a lot of folks. And part of the reason why it's really important to have these conversations and talk about these experiences. 02:00:48.13 Jala I have been talking for way too long when this is supposed to be about y'all. I just had to get that out there because I had a thought, a whole string of a thought and I had to put it out there for context. 02:00:59.14 Tom Rajan No, I think you would it's an incredible thought. 02:00:59.48 Ollie it was a very good tool to triangulate that i would rid 02:01:02.85 Tom Rajan You're spot on. It's just that the tolerance just for a lack of a better term has grown to more than just tolerating it. It's now accepted. And it's now almost, the it's almost a status quo that you're going to meet somebody with these types of conditions and someone with these disadvantages. 02:01:21.93 Tom Rajan And as opposed to holding that against them, now you're like, okay, how can I embrace this? 02:01:24.49 Ollie It was a very good time to challenge that. 02:01:26.18 Tom Rajan And how can I make all of us stronger because of it? 02:01:29.53 Jala Right. Absolutely. So shifting back to letting y'all do the talking, how does a typical day with your child play out? And I know that this is going to be like, it has changed over time. Um, you can talk, you can speak to how, how was it at the most intensive time? If you want to like how it is currently or, or however you choose to respond to that question just right now, what it's like, whatever you like, Molly, I'll kick to you first. 02:02:02.07 Ollie Yeah, so it depends on the day and it can change the day. So let's, I'll take a typical Saturday if that's okay. 02:02:07.98 Ollie So, um, cause during the week, obviously there'll be school and stuff like that. So I would go and don't primarily lose with his mom, but I go and see him as often as possible. And that means that I have specific days where I have him, but if I want to just drop over and visit him. 02:02:21.32 Ollie I can drop over and visit them as long as I give her, like I'm not just going to show up on the door. I will give her a ring and say, oh, if you guys aren't doing it and I could come over and see Donal later on. But on a Saturday, let's just say it's a Saturday, to have I will go and i'd pick him up and I'll bring him back here for 9 a.m. um because he's only about 20 minutes away. So I'll go pick him up, drive him back, and then we'll have breakfast. 02:02:42.40 Ollie and then we just do something fun. like And that's one of the the beautiful things about a Saturday is I'll do something for fun. But the thing that comes with autistic children is you're then going to try and gauge when the fun has run out for him. 02:02:57.28 Ollie And it's not usually going to be the time when the fun has run out for you. 02:03:01.62 Jala Right. 02:03:01.95 Ollie And that that can work in both directions. There are times where we've been doing things and Donal does not want to leave And I have been bored for about an hour and 45 minutes at this point. 02:03:11.15 Jala Mm hmm. 02:03:14.34 Ollie And I'm like, Oh, come on. There's only so many times that we can get on the seesaw, but he's having a great time and you don't want, but at the same time, you don't want to burn out the seesaw. 02:03:25.88 Ollie So the day becomes this. almost balancing act throughout the day of not ruining something so he gets tired of it but also not feeling like you're taking it away from him and ruining his day but yet then also feeling like you're not pushing him to do something when he's decided he doesn't want to do it anymore so every single day and even on a Saturday, it becomes this balancing act. But I can't say anything other than it's just always a great day because I get to spend time with him and he wants to come up and give me a hug. And when he's very happy, he's very, very good at and indicating to me that he's happy because he's laughing, he's giggling, he's hugging. And then when he's not or something goes his way, he'll communicate it in his own way by ignoring me or walking off or just leaving and then you have to be 02:04:16.65 Ollie paying attention to or whatever. Then we'll come home, we'll get lunch. Again, it can be a guessing game as to what he wants. Like, for example, I'll just take last Saturday. and We came home, it was around about half 12. I asked him, did he want an egg? And he said, egg, egg, egg. And I went, Grant. So he said it three times, this boy wants an egg. So I made him a fried egg, didn't want it. And then I was like, all right, are you sure you want an egg? And he was like, yep, egg. 02:04:43.98 Ollie So he's confirmed it again. So I was like, right, so if he doesn't want a fried egg. And I made him an omelette. Didn't want to touch it. And then I was, you're at that frustrated stage. 02:04:55.32 Ollie You're like, hmm, I've already cooked two eggs here. but What do you want though? Egg, egg, egg. 02:05:01.55 Ollie So I waited a minute and then it turns out that he just wanted to have the omelette just a little bit cooler. So again, it becomes this waiting game to see what's actually going to happen and how he's going to communicate. And I said, that's what every single day is like. Now what I will find in comparison to deOllieng with my nieces and nephews. 02:05:27.48 Ollie who are not like Donal and they're not on the spectrum or not diagnosed to be on the spectrum anyway. I'm just right Vincent, I'm calling out one of your kids, but um yeah, herera they're they're all lovely children, but they're much more able to be on their own. Like if I'm babysitting them for the day and I've i've done this, there are times where I don't know where any of those three children are in the house and they're all having fun and I'm perfectly okay knowing that they're going to be safe. I find myself that when I have Donal, I need to be in the same room with him. 02:05:58.15 Ollie just because I don't know what he's going to do if I'm not in the same room as him. And it can feel a lot more intense. And that's why, as we were talking, parents need to get that escape moment. And so I'd find myself like I'd be dropping down at home that evening at nine o'clock or whatever. 02:06:16.32 Ollie And it'll be the same thing where I'll be dropping them off and then I'll need to go up to off. 02:06:17.29 Tom Rajan Yup. 02:06:19.32 Ollie But basically it's a ah long day of making sure that he's happy, not bored, but not overstimulated, not understimulated, not doing something two or three days in a row because it can burn it out. 02:06:33.55 Ollie And I'm sure Tom's gone through that where there's something he absolutely loves. And then you play with it six times in two days and then you come with it on the third day to hand it to him again. And he just turns his back and never looks at it again. 02:06:46.36 Ollie And that just becomes this, I was going to say a never ending, because never ending sounds like i'm I'm disappointed with this. I genuinely enjoy that experience of trial and error. And as I always joke with Moira about this, that as somebody who comes from a science background, it's almost like every day is just full of 200 little experiments where I'm hoping that I'm going to perfect a little thing. Yeah. So it sounds intense. 02:07:16.11 Ollie And yes, the reOlliety is it is intense, but it's it's just ah an incredibly rewarding experience. And I'm sure that's the same for parents of neurotypical children as well. But getting through a day, and that again, that sounds like a negative, but I mean, going through an entire day without having even a tiny little meltdown is a feeling like no other. 02:07:36.73 Tom Rajan Yeah, absolutely. 02:07:40.91 Jala So Tom, how about you? Is it very similar? 02:07:44.28 Tom Rajan Um, it's similar, but i'll I'll put in the nuance that Micah is very much now a teenage boy. So that alone has its own challenges within itself, and he's more teenager than anything else nowadays. And that makes for, you know, a fun morning. So usually I get back home around like 6 30 in the morning, Micah's mom and his sister are getting ready to leave at the elementary school where they go to. 02:08:10.52 Tom Rajan So I have to wake up Micah, and just like any other 13-year-old, he just does not want to wake up in the morning. So at that point, I turned into the annoying dad. I lay down in bed with him. I'll tickle him. I'll bother him, just to get him a little bit riled up. And you know he'll he'll he'll express his frustration, but he knows it's all in good. So he'll get up, and he gets his morning routine started. you know I help him brush his teeth, and you know I help him get ready for school. 02:08:39.60 Tom Rajan and then He will, you know, search the house high and low for one of the remotes for the Roku TV in my bedroom. And then he'll just watch YouTube between the time that we leave and just, you know, in that little gap before we leave. He'll just watch some YouTube videos that he likes and just kind of get his day started that way. He goes to his school program. I pick him up. 02:09:02.79 Tom Rajan And every time I pick him up, he'll just jump into the back seat and buckle his seat. And then I reach my hand back and he kind of hooks my fingers with his fingers. and That's kind of our little handshake that we have ourselves. And then we go back home and, you know, he'll just hang out around the house. Like we will go and just kind of play with his toys. He watches some movies. He he does like his independence now at this age. That is a very, very important part of what he's doing. And that's why I kind of think about it. 02:09:32.20 Tom Rajan he is a teenager now, and he is having the same emotional feelings that a teenager would have, where it is ah striving for independence and trying to do your own thing. Sure, you know, we can be with his little sister, Emma, we can play Mario Kart, or we can, you know, do something like that. But that's not really his jam anymore. He just Rather go figure out his own thing on his own, because you know being with mom and dad isn't cool anymore. 02:09:56.27 Tom Rajan I'm like, I'm going to do what I was want to do. 02:09:59.18 Tom Rajan So we we we allow him to have that independence in some capacity. Obviously, you know Ollie is 100% correct when he says, I'm really concerned about his safety. you know There are times where he'll be running around like a plant, doing something close to the kitchen, and he's inadvertently hit a couple of the oven switches. 02:10:17.09 Tom Rajan And he's turned on a burner. 02:10:17.68 Ollie Yo, yep. 02:10:18.89 Tom Rajan And I'm like, oh, that that could have ended really poorly. So I have to rush over there and I have to go ahead and get everything there. You know, his door doesn't lock for that reason. I mean, we allow it to lock, but he just keeps it open or close just to kind of keep an eye and ear out for him. 02:10:33.62 Tom Rajan But for all intents and purposes, that's where he's at right now. He is discovering his independence as a teenage boy. You know, obviously there are things that he can't do. You know, I think he gets that, but it really echoes when I take him to school that he's a teenage boy. Because traditionally, whenever we cross the street or whenever we go off to a parking lot, I'll hold his hand because obviously there's fear, there's cars coming in, I'm just making sure he's observant. 02:11:01.98 Tom Rajan He will not let me hold his hand or hold his arm anymore. He absolutely wants to walk on his own now. And I contribute that to just the fact that he's now, ah he's a young man. 02:11:13.99 Tom Rajan And that is what he wants to do. he He wants to be looked at as a more independent person. So I'm now finding ways to allow him to express that independence wherever and whenever possible when it comes to that picking out his outfit. You know, it's just the small things, but first picking out what he wants for lunch. 02:11:33.19 Tom Rajan asking him, you know, giving him choice versus just kind of applying something to him and saying, Hey, this is what you're going to do. I'm like, Hey, do you want to watch a movie or do you want to go outside the backyard? And his response that he doesn't want to do either is no, thanks. That's it. I mean, he's very polite about it. ah So I just but he just I'll be like, Hey, do you want a piece of non bread or do you want beans today? No, thanks. And I'm like, Okay, so obviously he wants to eat something else. 02:12:01.08 Tom Rajan So it is a bit of a waiting game and you know, it's, it's you know, to Ollie's point, you are kind of waiting for him to take that approach. But also as he gets older, he is going to be looking for more and more independent action, independent thought, independent feeling away from the family. Just as we all did when we were 13, 14 years old. We wanted that independence and it's going to be The challenge is going to be how do we allow him to express that in a safe and controlled environment? That's where, you know, all he was bringing up, the kids of this age are so accepting. And so that makes him feel easier. It's still a dangerous world out there. I don't know how comfortable I'm going to be with some of them. So I have to find a way to structure it to where he's as safe as he can be in that situation. 02:12:46.19 Jala Right. And especially here in America with the situation with schools in general and everything. 02:12:51.76 Tom Rajan Yeah. 02:12:52.88 Jala So Ollie, you can look forward to Donal reaching his teenage years. 02:13:02.51 Ollie I can't wait for those hormones to kick in. yeah like If Donal does anything like his dad when he was 13, there's a wild phase coming through here, so not I'm looking forward to it. 02:13:06.18 Tom Rajan Yes. 02:13:15.39 Jala Right. 02:13:16.49 Ollie Why are you up high don't always jumping off? All right. Just like me when I was that age, I genuinely, I'm not sure if you did the same Tom, but when I hit puberty, uh, I just turned into an adrenOlliene junkie for about two years. 02:13:21.11 Tom Rajan Not a problem. Pretty much. 02:13:30.07 Ollie And girls weren't like people go, Oh, you get interested in girls. 02:13:34.62 Ollie It was like, I was interested in skateboards and falling off stuff. 02:13:38.13 Tom Rajan Oh, yeah. 02:13:38.15 Ollie And girls were just like, yeah, go get it. Yeah. right Yeah. I'm sure she's pretty. I'll think about that later on the season, but right now that's a tree. but And I need to be on top of it. And if I fall, well, I probably won't die. 02:13:51.78 Ollie Probably. 02:13:53.11 Tom Rajan It'll hurt for a bit, but you know, hey, the stars. 02:13:54.53 Ollie Yeah. And then I'll get over it because I'm still young. 02:13:56.60 Tom Rajan Yeah. I'll be fine. I know again, yeah, at that age, I was big in the sports and you know, it was playing American football and it was playing basketball and it was very, very high contact all the time. 02:14:08.06 Tom Rajan Like the 17 year old you were playing against that was the attack age. So I completely get it. 02:14:12.16 Ollie yeah 02:14:14.11 Tom Rajan And that is how we get our fix. And Micah is no different. So now it's okay. How can I get him to express that there? You know, one thing I was thinking of is introducing him to Ajahn and seeing if there's anything within the boy's high space we can do with him. 02:14:28.92 Jala Oh, that would be awesome. 02:14:29.38 Tom Rajan He's also, he's also actually, and another person that I know from our gym, she is an instructor for kickstarts karate. That is, as opposed to a PE credit, they start taking karate classes in school. 02:14:43.84 Ollie Oh, lovely. 02:14:43.92 Tom Rajan So I have him scheduled to be enrolled in kickstart karate in a few weeks over at his middle school. So that's going to be another one of those things where hopefully I take away my daughter already takes Muay Thai. And now with Micah, obviously with, you know, some of the limitations, it'll be a little bit different. But I see that as something he can start engaging in. And that could also you know facilitate that need of, hey, let's work, let's let's be that adrenOlliene junkie in our own way. 02:15:12.11 Jala Right, right. That would be really awesome. 02:15:16.01 Tom Rajan Yep. 02:15:16.84 Jala So, yeah, so I did have a couple more questions for both of y'all. um How do you feel that you have developed over time as a result of your particulars of of parenting, you know, ah in your particular situation? 02:15:34.24 Jala I'll kick to, yeah. 02:15:34.73 Ollie Yeah, I can go if you want. and I have come to terms with not being able to fix things. 02:15:45.81 Ollie And I spent a lot of my life achieving and and feeling very proud of myself and feeling like I could do anything. 02:15:57.32 Ollie And anything from sports to education, whatever I threw my hand at, I thought I could do. like i remember going up and on stage and acting i say as a teenager. 02:16:09.07 Ollie Can't act by the way. ah but thinking that I was incredible at it. 02:16:14.16 Ollie I remember going to, so there's two main sports in Ireland. We play soccer, we play Gaelic football. I never played for Gaelic football. I was a good soccer player. and Yeah, the i not to blow my own trouble, probably better than good, but I was very good. 02:16:28.88 Ollie And I remember trying out for the Gaelic team, though I'd never played it. I just, I was like, oh, I can do this. I'm good at this. I can try this. So I was, I've always been just hyper naturally confident in myself, even when my skills don't pay the bills as to say, and I find that for the first couple of years, that the feeling of failure was just crushing. 02:16:38.85 Tom Rajan That's fun. 02:16:59.05 Ollie And then I learned to accept it, that there's nothing to fix here. 02:17:06.14 Jala All right. 02:17:06.52 Ollie And it took me a while to come to that realization. And now I think I'm in a much better space, a much healthier space for me, for but my relationship with Moira and for my relationship with Donal. 02:17:19.24 Ollie So I would say the main thing that's happened, and as you you had mentioned it that it's going through the stages of grief, getting to the point of acceptance took at least three to four years and now I feel like I really am there and I'm learning to live and make the best of what I have as opposed to trying to change it. So yeah I'd say that's my main thing is I've learned to accept it and and live for what I have as opposed to you know regret what I don't. 02:17:51.65 Jala Right. How about you, Tom? 02:17:55.21 Tom Rajan Yeah. um I think I've become just naturally patient with everything. I think growing up, prior to Micah being born, I was relatively impatient. just Part of it was because I'm used to operating fast and you know getting things done quickly, efficiently. That's always been my goal. And because I'm able to get information, I'm able to synthesize information, and I'm able to operate on that very quickly. 02:18:24.21 Tom Rajan and you know sometimes it was right sometimes it wasn't but it was always fast and you know more often than not my intuition was pretty correct but with mica i i was now deOllieng with somebody who immediately you know was the love of my life but i couldn't understand what he was asking so my intention on giving to him as fast as i could and providing for his needs as fast as i could i couldn't do that anymore so and 02:18:50.13 Tom Rajan When I wasn't getting to his needs, I can see he would get frustrated. So it was almost like a negative feedback. I would try something. It wouldn't work. I would try something. It wouldn't work. And he would get frustrated because he would want something. He wasn't getting it. He would want something. He wasn't getting it. So we would both just get frustrated with one another. It would lead to, you know, what would be best described as an argument. He would start yelling and I would start getting really angry with him. And it just wasn't a fun situation. So. 02:19:19.37 Tom Rajan It forced me to slow down, really assess what what what the scenario is, really assess how he's behaving, what he what are the stimuli around him, why would he be you know acting in a certain manner based on where we are in the house, based on the time of day, based on temperature, based on whether or not he's eating, what he ate, what he drank. 02:19:47.53 Tom Rajan And I took in a lot more of those data points, and I started being a little more or a lot more pragmatic in thinking about his needs. Of course, he still wanted things as quickly as possible. And he, again, you know, to Ollie's point, he thinks he's communicating very effectively, and we're the ones who aren't getting it. So you get frustrated that he wasn't getting service, whatever he wanted immediately, but at least this time I knew okay he's hungry and let me let me just present two different food items here so do you want a frozen pizza or do you want beans and he'd say beans okay so let's go with that you know he wanted it 30 seconds ago but at least i'm not giving him things that are incorrect all the time so it helps out with our relationship and you know he'd get it he'd go to his table he'd you know eat while watching you know hotel transylvania 3 and all those right he was happy about 02:20:31.82 Jala Right. 02:20:44.14 Tom Rajan So I think that's what it taught me. And then that started bleeding over in everything. i I wasn't necessarily being reactive based on what I thought. I was being proactive based on what I was observing. And that's that's a lesson I have to attribute. 02:20:59.56 Jala Right and I had a few other things that were running through my head while I was listening to both of you. So um first thing that I wanted to say is that um i'm I would imagine that being in this kind of situation where you need to ah really slow down and observe and analyze and everything constantly the way that both of you have to ah in order to communicate with your kids that That would also heighten your capacity to observe and you respond to other people around you, basically raising your mindfulness level because you have to be so mindful around your kids. um What do you all think about that? 02:21:45.69 Tom Rajan Yeah, I would agree with that. And again, like immediately when you brought that up, my mind just went, again, this is just me. My mind went to Daredevil. Matt Murdock, this 100 foot character. 02:21:56.16 Tom Rajan He lost his sight, so he had to rely on his other senses to to become a superhero, in essence. I'm not saying I'm a superhero, definitely not. 02:22:03.52 Ollie Ha, ha, ha. 02:22:03.95 Tom Rajan But what I was saying is I don't have the ability to communicate with Micah, so I have no choice but to observe all the other senses, all the other fields. And now when I can communicate with somebody and we can leverage that communication, I don't use that as the crutching. 02:22:23.04 Tom Rajan I use the other cues to get a full understanding and that helps me become more understanding to their needs. So again, just kind of to your point, it does create that and again, there's bleed over to everything that I do. It requires that. 02:22:39.89 Tom Rajan attention to detail and that understanding of what their actual end goal is. And, you know, in my work, that's a valuable trait to have when, you know, you're you're doing those type of work. i do So it's bled over in that. So it's made me better. and 02:22:54.49 Jala Right. 02:22:54.95 Ollie Yeah, i i I would say this, that I've been teaching for 20 years between third level, second level. So that's college level and the equivalent of high school. 02:23:06.55 Ollie And during the time that I was first teaching, so like the first 10 years, I thought I was a great teacher. And I thought that I really cared and I really pushed the good students to be the best of the best that they could be. And I really worked hard and I'd bring home my work and I'd correct it and I'd make sure everything was done. And since Dolan was born and since Dolan has been diagnosed, 02:23:32.20 Ollie I now have realized that that was all in my head and I thought I was a great teacher. But none of those students that I taught, how do I ever interact with it ever again? I've never met them out. I've never seen them. I've never had chats with them. 02:23:49.02 Ollie I don't have them sending me emails. I don't have them checking in to see how I am. And in the 10 years since Dylan was born, I now think that other people think I'm a good teacher and students that I used to teach think I'm a good teacher. And now as I'm passing through and I have a Leaving Cert class, 02:24:06.30 Ollie and which is, you know, it's just be pre getting into college and the I'm not going to get into the details of how Larry sister works, but um they have to do well in in their exams in in cut in high school to get into the third level. But now I don't have students who fail. And back in the first 10 years, I had students who were excelling, but there'd also be fails in the class where I wasn't focusing on their needs. But now having had Donal and having to deal with a child who doesn't pick things up first time, who isn't naturally gifted in certain things, and I find myself, as Tom said, being so patient. 02:24:52.18 Ollie And not just dismissing this child as, oh, you're no good at physics. So I'm going to focus on the other kids. And ah ah it turns out you don't lose the really good kids. 02:25:04.80 Ollie They are still really good. They are working and they're doing their things and their high IQ is going to bring them along anyway. But I find now, 10 years later, that the children who were struggling to get a pass that I helped to bring along, they are the ones who still send me an email. 02:25:23.02 Ollie and thank me. And when they meet you out, they come over to say hello. And they come over to high five Donal in the park when they're out with their own kids now. And as I said, it's I think that's a byproduct of needing to have patience to deal with Donal. It makes you more patient with every other person you come into contact with. And I think it's made me better. It's made me a better person. Now, it's made me better at my job because I'm now a more personable person, if that makes sense. 02:25:56.00 Jala Right, right. That's awesome. So another thought that I had when I was listening to both of you is some something that's said within the, and and I keep on referring to the disabled community, mostly because I listened to um some disabled community podcasts. I already mentioned one earlier. 02:26:15.34 Jala Hi, Laura. Anyway, um and ah so so one of the things that the disabled community says a lot is that disabled people are not disabled because there is something wrong with the way that they exist in this world and experience this world. 02:26:32.41 Jala They are disabled because society does not give them what they need in order to succeed. This is also true for people who are neurodiverse ah and are in struggling like ADHD folks in a workplace who struggle with their ah brain wiring right and trying to stay on a task that they are expected to perform in this certain way and have the certain attention span and this that and the other and they can't they have to have certain set hours that don't really work with the way that the brain is working right um things like that 02:27:06.15 Jala So um and this also kind of extends into kind of a communication thing because both of you have said that your kids to themselves they feel that they are the perfect communicators and what is wrong with you for not understanding what it is that they need and want and um So in some cases, um it really just kind of reminds me of some studies that have been done more recently with other types of animals in the world that are not humans. And how, say for example, um ah pretty much everybody's seen it on social media these days, but they have those little talking buttons for dogs. And then people are just like so amazed with the complexity of what the dogs are thinking and how they're acting and everything. 02:27:55.91 Jala And it's just because people... So here's the thing, like what I've learned in in reading about how people are studying animal language and things, and in what's happening with those buttons is people are teaching dogs how to speak human using these buttons. 02:28:11.96 Jala rather than the humans understanding the way that the animals communicate naturally. 02:28:18.64 Jala A bee, for example, bees communicate to each other by doing the dance. That's how they communicate, dance. Interpretive dance. I would love to order my mocha through interpretive dance, but I think the person behind the counter would throw me out of the the coffee shop if I did that. 02:28:37.30 Jala So um there's ah this kind of hubris of humans to expect that everything and everyone that is is you know um something that that is worth their time to invest in is going to communicate the way that humans communicate. 02:28:39.61 Ollie -hmm. 02:28:57.58 Jala But then they also expect that that human communication, the pinnacle of all communication is through verbal or written language. And so you know there' that's that's part of what causes some of that that kind of backlash feeling that y'all experienced when you first found out about the diagnoses for your kids and how other people responded in in your families or in the the world larger community or whatever, um because people have this concept of the only real way to have effective and good communication is through words. 02:29:36.41 Jala And I know that this, it's ironic for me to be saying this when this is a podcast, which is verbal, and it has a written transcript for the folks who are auditorially impaired. But even so, it's it's not the be all end all of communication. There are so many ways in which every single day people communicate with one another in a nonverbal way. 02:30:03.86 Jala and We do that even people who and are not neurodiverse or do not consider themselves to be neurodiverse or especially somewhere on like the ASD spectrum or anything like that. um We all communicate in nonverbal ways. 02:30:22.75 Jala In the case of your kids, they are you know like they're trying to express their everything that way because that's that's the kit the toolkit that they're working from. right and For me, and and this is like me kind of jumping the gun to the last question I had for y'all. 02:30:40.48 Jala um My thing is I wish more people would understand that whatever way people, other people experience the world and the way that they ah interpret things and the way that they communicate themselves and express and and live and grow and do all the things that they do, um all of those things are beautiful just the way that they are and people need to meet other people and also animals and everything else where they're at, right? 02:31:11.37 Jala um Whatever that means for that person or that animal or what have you. So um and I just have a personal belief of respecting and loving all life, et cetera. 02:31:24.30 Ollie Yeah. 02:31:25.85 Jala So yeah, that that was my little soapbox series of thoughts. um I've been doing a lot of thinking, especially recently about, uh, the kind of hubris that humans have when it comes to language is the pinnacle of everything because you can't have abstract thoughts unless you can put labels on things in this, that, and the other. And, you know, uh, all that big run around, but then there is so much beauty in all of the things that aren't said and people need to appreciate that, you know? 02:32:02.32 Jala My last question to both of you is, what do you wish other people understood about your child or non-speaking autism in general? Tom. 02:32:17.51 Tom Rajan um I would say I hope and wish they understand that Micah is a loving boy. He is into all of his Disney movies and he loves Pixar. He laughs. His laugh is infectious and he just wants to be in a comfortable happy place with his toys. He doesn't look to have any malicious intent towards you. He doesn't look to be a burden to anyone. He just wants to kind of do his own thing. All of this being said, you know, he's not going to be 02:33:00.10 Tom Rajan anything more than just kind of where that is in your eyes, but you need to look at him a little bit differently. He wants to be a productive part of your situation. He wants to help. He has nothing but love for anyone he does interact with, even the people that he doesn't even know that well. And if you can just reciprocate some of that to him, then I guarantee you your relationship with him is going to be outstanding. 02:33:26.29 Tom Rajan and he's going to look at you with respect and esteem if you can reciprocate that respect and esteem. 02:33:35.23 Jala Awesome. How about you, Ollie? 02:33:38.38 Ollie um just I have three things that that come into mind. like One of them is just a message for for parents, and then one of them is a pet peeve of mine, and then the other one is just about Donal and children like Donal and parents. So the the message to parents, first of all, is um it's okay, and and I really want you to listen. I'm going to sound a little bit upset, but it's okay to think to yourself that life would be better if your child didn't have autism. And that doesn't make you a bad person. And it really doesn't. We all go through moments. And I love Don with all of my heart. And I love everything about him. But his life would be easier. And I don't care about my life. ah His life would be easier if he didn't have autism. And every parent is going to have a moment where you think that. 02:34:31.53 Ollie And it does not make you a bad person. And you shouldn't feel bad about it. like i'm not I'm not saying you should go around getting a tattoo with that on. But you don't have to then beat yourself up about it. We all go through moments like that. I was watching the Paralympics. You just mentioned it there. And then I saw a guy, he runs with blades, ah like the lower half of his legs are blades. 02:34:56.95 Ollie And he was incredible. And he was given a speech afterwards. And they asked him would he change anything about his life. And he said, yeah, I probably wouldn't have lost my legs. And the reaction from some people was, oh, I can't believe he's ah that's like that's ableist. Like, no, he's he's saying that he probably would have preferred not to have been blown up in Afghanistan. 02:35:19.58 Ollie Like that's what happened. 02:35:20.42 Jala Right. 02:35:20.66 Ollie That's how he lost his two legs. And yes, he can be an amazing athlete, but it would have been a lot easier for him in his life if he didn't have that trauma and go through with that. And for parents listening, you will have those thoughts and you will have moments where you feel bad and it does not make you a bad person. 02:35:40.00 Ollie right And I'm not gonna say, I'm sure Tom has had those. I know just from myself that I have had this thought many times and then the next day I've gotten up and I've been so mad at myself and so angry at myself and how can I ever think about that? 02:35:45.70 Tom Rajan Yeah. 02:35:54.44 Ollie Donal's perfect and Donal's amazing and he is and he's all of those things, but you can't help yourself think. And so that's the first thing. So if you're a parent and you're you're listening, We've all had those thoughts and it's not wrong to do it. It happens and then you just move on and it will happen again. And even when you get to the acceptance stage, you will still have those thoughts. You'll see your son playing or your daughter out doing something at some stage and you just go, if only. 02:36:23.62 Ollie or what could have been, or you'll see another child on a football pitch scoring an overhead kick and you'll be like, that could have been my boy. And it's it's a brief little moment and you move on and the rest of your life, the rest of your day will be fine. So don't beat yourself up by having those thoughts. The second thing, and this is my personal pet peeve and other people don't might not agree with this and that's totally okay. Please don't diagnose other people or other people's children. And because you, 02:36:53.90 Ollie might know somebody who has autism, if you see another child or you see another person and they're doing something slightly different to the norm, I personally don't think it's okay to say, oh, I think that person might have a bit of the autism. Please don't do that because you don't know anybody else's situation and you're not a doctor, unless you are, you're not a doctor, 02:37:21.02 Ollie but so saying that is instantly labeling somebody and you might think that you're being accepting and you're not doing it in a judgy way but the fact that you've decided that this person that you've never met and never interacted with before has a diagnosis because you've decided they do that I think it should be just standard practice to not do it now that's not the same thing as saying 02:37:47.51 Jala Thank you so much. 02:37:48.57 Ollie Oh, this person has characteristics that I've seen in autistic people. Now you might say you're picking knits there Oliver, but the wording of that is very specifically not the same as saying this person has autism. 02:38:02.25 Ollie And I find it similar when i when you hear people saying, Einstein was autistic. And I've seen this written down and I've seen it repeated from other people who are going back to sources who have no evidence of this other than, Einstein was quite good at maths and focused on patterns. Okay. That, again, some autistic people have those characteristics. It doesn't mean that everybody who has those characteristics is autistic. 02:38:31.11 Ollie And that's something that is a person pet peeve of mine, because I see it all the time. And people just saying, oh, this person, they've got autism, whatever. whatever And then finally, oh, sorry. 02:38:37.84 Jala Right. So before you get there, let me just say, um so first off, there's that broad brush again, right? ah Trying to apply, oh, that you know, I know this one anecdote, and therefore that one anecdote is a proof for every other case that I see out in the world, and that's not science. 02:38:56.49 Jala That's somebody having an opinion. um Two, ah the wording there, it's not ah a, oh, you're you're picking knits. It's ah one of those is a microaggression. 02:39:07.75 Jala One of those is an observation. There's a difference. 02:39:12.19 Ollie Oh good, because i I just wanted to make sure, because again, we ah we all all of us will do that at to some extent. 02:39:14.32 Jala Yes. 02:39:19.34 Ollie It's when you start living, and in particular in online conversations. 02:39:22.39 Jala Right. 02:39:22.91 Ollie And I see this a lot, and I i moderate a quite large fantasy novel ah Facebook group because it gives me something to do sometimes because I'm awake at four o'clock in the morning. and You'll see people would be like, oh, I really love Lord of the Rings. 02:39:38.70 Ollie And they'll they'll mention something specific from Two Towers. And then youll people just online will reply, oh, that's very autistic of you. 02:39:48.30 Jala Yeah. 02:39:48.45 Ollie What that mean? 02:39:49.01 Tom Rajan Yeah. 02:39:49.56 Ollie like right And stuff like that. And and it's it's things like that that lead to the word autism becoming an insult. 02:39:58.01 Jala Right. 02:39:59.15 Ollie where it's not, it's being used by non-medical professionals to mean anything which is out of the normal or anything which is, and again, this is the word that I'm using to describe this, but it's not what I'm actually feeling aside, but anything which is abnormal and it shouldn't be used to describe that. 02:39:59.46 Tom Rajan yeah 02:40:16.00 Jala Right. And that's, that's exactly, uh, the word of which shall not be said that was thrown around so much when we were younger. 02:40:24.16 Ollie We were kids, yeah. 02:40:24.71 Jala Yes. 02:40:25.25 Tom Rajan Yeah. 02:40:25.36 Jala Uh, it's just replacing that is what's happening. 02:40:26.35 Tom Rajan yeah 02:40:29.24 Ollie Yeah, that's all that's happening now is where people are latching on to a accepted medical word that they can use as an insult. 02:40:37.25 Jala Right. 02:40:38.02 Ollie And and again, and they're using the weaponizing, and it's things like that. 02:40:38.37 Tom Rajan They choose to weaponize it. yeah 02:40:42.93 Ollie And even when and when people who are are have the best intentions use it in that way as well, it just becomes that. And then finally, and this is in in relation to Donal in particular, is, 02:40:58.06 Ollie And it's probably in relation to all autistic children. This is similar to the I don't see color defense when people are talking about interacting with other people. If you come across a person who has autism and you're in the park with them, you shouldn't treat them exactly the same as every other child. You should be aware of their needs. now that is when you're really accommodating the person and weren' nobody is going to be perfect and you might overexcite a child if you're interacting with them too much 02:41:42.73 Ollie That can happen even as a dad. they are my I Donal today. It's a thing that can happen. As Tom was mentioning, um sometimes his little boy wants to be left alone. 02:41:53.42 Ollie And I'm sure Tom has made the mistake of sticking his head into the room one too many times in a 10 minute period just to check on him or to say how he's going. 02:41:57.30 Tom Rajan yeah 02:42:01.70 Ollie And it can happen to even the most well-meaning of person. But if you are watching a group of children and one of them is autistic and you're like, no, no, I'm going to treat them all identically. 02:42:14.30 Jala so soap So what I want to say to that is I'm going to have to add another link to another Jollichon's Place episode. 02:42:15.82 Ollie That's not the best response. 02:42:21.38 Ollie Lovely. 02:42:22.87 Jala But in the DEIB, or ah Diversity, Equity, Inclusion, and Belonging episode, we covered the difference between the words equality and equity. 02:42:35.59 Jala So here's the here's the thing, these people who are saying that, you know the the version of I don't see color you know when it comes to kids and trying to take care of them, I'm going to treat them all equally. That means that you are giving unto every child the exact same treatment. 02:42:55.24 Jala Equitable is what you really need to be going for. Equity is when you are giving unto each child that which they need. Some children need more attention and care than others do. Some are more independent than others. Some have different scenarios wherein it's more difficult for them to communicate what it is that they need. 02:43:17.12 Jala you know, case in point here, right? So you want equity, not equOlliety. 02:43:19.94 Ollie Yeah. 02:43:23.46 Jala Equity is what you need to be looking for here. 02:43:27.05 Ollie Yeah, and that's, and it's just a small thing. And it usually, and it will genuinely usually come from people who have very little experience with people on the spectrum, and where they're like, I'm not gonna do this. 02:43:36.78 Jala Right. 02:43:39.57 Ollie And the way, so I have a really good friend, John Lane, and and John has said this to me a few times, where hes he it to, if you saw a person in a wheelchair, and you knew this person in the wheelchair was going into a building, 02:43:56.05 Ollie and you told them the directions to use the steps rather than the ramp because you're going to treat them the same as everybody else. Even though you know the ramp is there on the other side of the building, you're still going to give them directions to think because if a person who wasn't in a wheelchair asked you you, I'm not going to treat them any different. And in some cases, you you should. you stay There is a thing. And as Jana said, it's the equitable thing. It's not the equal treatment. It's giving the people the treatment or the response or the help that they need to allow them to achieve. And that's what we' that's what everybody should, the goal should be for everybody to achieve, as opposed to, I'm going to treat everybody the same because it doesn't work out that way. 02:44:45.06 Jala Right. Right. 02:44:47.36 Jala So ah that is going to wrap this episode up with a little bow. So at this point, I want to go ahead and toss to both of y'all to tell the listeners where they can find you on the internet if you can be found. 02:45:03.68 Jala Tom, do you have socials you want to share or are you a secret private cryptid that doesn't exist anywhere? 02:45:10.70 Tom Rajan No, no, and and you know, again, I'm not sure how much value you'll get. You can find me on Instagram at tomrogin7112. That's probably the most active one. and Again, um um I used to be in the podcast game a long time ago. This is definitely getting those creative juices flowing again. So I'll probably have to get back into it now that I have that itch to scratch again. So yeah, youll you can find me right now on Instagram. That's probably the best way to locate me. And, you know, again, if you want to see me with weights and workout, all that angst, so that's where we go. 02:45:43.00 Jala That's right. That's right. And you're the one who inspired me to post reels all the time of all the stuff I used to not post real. They used to post just like a flexing photo and be like, that's it. That's all you get. Although like a long time ago, I used to do individual short clips of all the different stuff I was doing. 02:45:59.68 Jala So Ollie remembers those days. It's been a minute. I don't even know how long I've known you, Ollie. 02:46:02.62 Ollie I remember those, yeah. 02:46:05.73 Ollie Long time, i don I've been listening to you on duck feed related stuff for at least 10 years. 02:46:11.74 Jala Yeah, I know. And um because I've been on the level for 10 years, actually going pushing 11 years this year, I think. 02:46:19.84 Ollie Time flies. 02:46:22.23 Jala So yeah, Ollie, do you exist anywhere on the internet that people may find you? 02:46:27.00 Ollie I do. ah i ah so i'm um I found a member of the Media Evil podcast so if you look in the Facebook group I'm in there as a moderator. ah Judging book covers I'm also a permanent guest host because I'm not a co-host and I keep saying to the two ladies who are the main host that I am a guest host I'm there for color and flavor and and I know less about books than they do. So judging book covers and there's also a judging boy bands breakaway podcast because for some reason we find ourselves talking about NSYNC repeatedly. I don't know why they weren't even mentioned in that many books. And then ah you can find me on Facebook just look for Ollie Brady and apparently I've got an Instagram. Now 02:47:07.16 Ollie with my particular Facebook page and my Instagram page, I've never posted a picture or an article or anything like this. 02:47:07.24 Tom Rajan Thank you. 02:47:13.70 Ollie So if you look for me, anything you see a picture of me, that's me being tagged by other people. 02:47:19.09 Ollie and And it's not me. I never post anything. I use it specifically to talk about books and stuff. 02:47:25.77 Ollie And I i used Facebook as a resource for a long time um to talk about science and science teaching and and physics and stuff. And then it became a social thing for like looking at movies and books or whatever. 02:47:38.09 Ollie And my Instagram, it's the most confusing thing in the world to me. I don't know how Instagram works. I don't know how you get to follow people, but I have nobody that I'm following and something like 70 or 80 followers. 02:47:55.53 Ollie And I don't know how that's existed because I don't remember setting up an Instagram. 02:47:57.90 Jala But yeah I don't know. I don't know how you might have set one up accidentally, Ollie, but. 02:48:07.06 Ollie but it must be linked to Facebook because I've never, I don't know, like I couldn't tell you how to log into it. 02:48:15.11 Jala All right. All right. So we will put your link to the podcasts that you are a part of and also to your Facebook and we'll leave it on that. 02:48:24.93 Ollie that thank you because as I said that will never have there will never be a picture on that Instagram it would be blank for the rest of time 02:48:31.46 Jala Right. As for me, you can find me anywhere that I might be found at jalachan, including jalachan dot place where you found this episode and all of the others. So it has been real, y'all. Thank you both for coming on and thank you all listeners for tuning in. So until next time, take care of yourself and remember to smile. [Show Outro] Jala Jala-chan's Place is brought to you by Fireheart Media. If you enjoyed the show, please share this and all of our episodes with friends and remember to rate and review us on your podcast platform of choice. Word of mouth is the only way we grow. If you like, you can also kick us a few bucks to help us keep the lights on at ko-fi.com/fireheartmedia. Check out our other show Monster Dear Monster: A Monster Exploration Podcast at monsterdear.monster. Music composed and produced by Jake Lionhart with additional guitars and mixed by Spencer Smith. Follow along with my adventures via jalachan.place or find me at jalachan in places on the net! [Outro Music]