Episode 311: Bob Sagoo: Empowering an AAC User as a Parent

This week, Chris and Rachel interview Bob Sagoo! Bob is the father of Harchie, an 18-year-old young man with cerebral palsy who uses an AAC device with eye tracking to communicate (along with other modalities). Bob shares about Harchie’s AAC journey, Bob’s work to get Harchie mainstreamed in school, Harchie going to college, and more!

Before the interview, Chris and Rachel talk about delivering fun experiences while teaching about language with AAC! They share about why we need to bring playfulness and a playful energy, and some ideas for ways we can bring the fun, like humor, music, dressing up, painting, and modifying games!

Key ideas This Week:

🔑 Parents need to feel empowered - in any situation, parents are the expert when it comes to their child. It’s Ok to respect specialists for their experience and knowledge, but when it comes to your child, you are the expert. You are their advocate and speak on their behalf until they are able.

🔑 It’s for OK not to be OK. There is often a lot behind the scenes going on within families that we don’t see, especially for families of children with complex bodies. We need to give parents grace when working with them - if they don’t do something we recommend, there is probably a reason other than “they don’t care.”

🔑  Bob says the feeling he gets when he wakes up at three in the morning, of “I don’t know what my kid is going to do after I’m gone,” doesn’t really go away, but it can be helped a lot by taking the time to reach out and find out as much as you can. That will help you become as informed as possible as you learn about what your child needs.

🔑  If parents are feeling overwhelmed by information about their child’s needs and don’t know where to start, one good place is to connect with other parents of children with special needs,  They can help you get started moving in the right direction, and anytime you’re going through something difficult, knowing you’re not alone can be very powerful!

Transcript of the Episode

Please Note: This transcript was generated using speech recognition & AI tools; it may contain some grammatical and/or spelling errors.

00:00:09
Welcome to Talking with Tech. I'm your host, Rachel Madel, joined, as always, by Chris Bugaj. Hey, Chris, how's it going?

00:00:15
Rachel, I have to tell you, I'm really excited about this one because we teased it earlier, and now this is the fun banter. We're going to talk all about having fun, right? You know, if anyone listening right now has come to our full day session, which really could be two days.

00:00:31
Right.

00:00:31
Like is enough. We talk about, like, six components that you need to design and deliver awesome educational experiences around learning language with AAC. And number six, spoiler alert, is two.

00:00:45
Words, simply have fun.

00:00:48
It's just about having fun, right? Like, the whole thing. If it's not fun, then you're doing it wrong. Right. And fun can be subjective a little bit, but it should be fun for you, and it should be fun for anyone you're supporting.

00:01:01
Absolutely. I feel like sometimes in my own clinical work, I'm, like, kind of dredging along and I'm kind of stuck in a rut, and then I'm like, wait a second. I get to work with kids and I get to do, like, fun things, and I can create a fun experience. And, you know, I think that that is something that's so cool about what we do. And it's like, I don't know.

00:01:27
I have friends who are, like, sitting in, you know, exec roles or advertising and, like, they don't get to, like, play and have fun. And so I feel like it's one of, like, the most beautiful things about the work that we do. And so often we kind of get stuck and we're not following the fun well.

00:01:44
And then there's another aspect to it. There's something, a pattern that has emerged where when we talk about having fun, what we often follow up with that is so, like, what's the wackiest, funnest thing you've done to support kids in learning language or teach them something? And it's a little bit of, like, people kind of looking at each other or kind of going, I don't know, what is the funnest thing I've done? And then you get something like, well, you know, I wore a hat that's super fun or maybe a costume or, you know, we made some sort of rice Krispie treats or something like that. Like, there's.

00:02:24
There's.

00:02:25
There seems to be a.

00:02:30
I don't know.

00:02:30
People seem to be struggling. Like, I'm struggling with words right now. They're struggling with what is even. How do I make it fun or what is fun, right? Yeah, I can't do that.

00:02:44
Like, that would be embarrassing, or that's somebody else's job, or I'm not fun. Right. Here's the feeling, okay? When I was in middle school, we would go to a dance or a high school dance, and I would stand like a wallflower on the side because I didn't want to go out there and think, you know, someone see me and look at me and think that I couldn't dance or was wacky for some reason, until I realized that's what people like, is when you do jump out there and dance, you see me? You see me dance, you see me.

00:03:18
I sure have, Chris. I've seen it. I have videos of it, actually.

00:03:23
And I try to instill that with my kids. Like, don't feel self. I mean, you might feel self conscious. Get over that, because that's the, like, that's, who do you want to be? You want to be the person that's out there having fun, dancing and acting wild.

00:03:34
But that's the sort of analogy that I can make to, you know, to my own background knowledge is, okay, you might have this sort of insecurity about it, but what kind of actions can we take so that you can learn to bring the fun?

00:03:49
Absolutely, Chris. I feel like it as we kind of get an age into adulthood, I feel like for some people, it just, like, they get further and further away from play and further and further away from fun. And it's just, like, obviously, as human beings, we all love doing fun things, and fun can mean different things for different people. Right. But I feel like the fun kind of gets back to this idea of play and a playful energy that you can bring.

00:04:23
So even if you're not maybe the most creative person or you can't think of anything, you can always bring this playful spirit and playful energy to whatever it is that you're doing. And I think that, you know, myself, like, I'm always trying to think of ways that I can play and tap into kind of that creative side, both when I'm working with students, but also just in my everyday life. Like, I. I like to infuse everything with a playful energy. And this idea of play is what I think we might have lost touch with.

00:04:58
I mean, not me.

00:05:00
Definitely not you or me.

00:05:01
It's got to be cold and dry, and you're going to do what I say. You know, that's totally my. That's what I found to be most effective, is when I boss people around.

00:05:13
Sounds so fun, Chris.

00:05:15
And sarcasm seems to work really well.

00:05:20
I love it, but.

00:05:22
Okay, so let's just say universally, what would you say are some things almost everybody thinks is fun?

00:05:32
Let's see. Everybody thinks is fun. I mean, like, I feel like humor, generally speaking. Like, and now I know everyone has kind of different senses of humor and things like that, but, you know, I feel like laughing and, like, things that are funny.

00:05:51
Mm hmm.

00:05:51
So dad jokes. You're talking about. You're specifically talking about me and dad jokes?

00:05:55
I'm looking at you, Chris. Boogay.

00:05:58
All right, so that's your turn. How about my turn? I'm gonna say, almost universally, bubbles are fun.

00:06:04
Right?

00:06:05
And I know all the rage right now in our school districts are actually creating bubble wands using 3d printing software, Tinkercad, where kids make their own bubble wand, and they print them out and then they blow bubbles because it's fun, right?

00:06:21
Ooh, I love it. Bubbles. Yes. I actually went to a silent disco, Chris. Silent disco at a sunset with those.

00:06:29
Huh? You've seen huge bubbles. Like, the huge bubble wands that are, like, massive bubbles. It was so fun, and it was so playful, and it was like a bunch of adults just like, silent disco. So we had headphones on, and there were different channels, and we were dancing and blowing bubbles, and it was so fun.

00:06:49
I saw a video of that. It looked like, were you crying in that video? You were so sad. I think that's what I saw. Right?

00:06:55
No. Yeah, I saw you doing that. It's like, yeah, that's so fun. Why wouldn't we go to that as an adult? Right?

00:07:02
I'm not saying, oh, Rachel, what a weird thing you did that you were blowing bubbles and jumping through bubbles and waving your arms around like, wow, that's weird. No, it's fun, right?

00:07:13
Totally.

00:07:14
All right, so I said bubbles, and you expanded on bubbles. What you got? What's the next? Like, almost always fun, or everyone might think this is fun.

00:07:23
I feel like music can infuse fun into whatever it is that you're doing. So if you have some fun music. And generally. Generally, I feel like dancing. Although I feel like some people don't feel comfortable dancing.

00:07:34
But if we put on your favorite song, you were by yourself at your house, you probably find that fun and could kind of move your body. So, yeah, I feel like music.

00:07:45
Yeah, I totally agree with that. Moving just big, giant, gross motor movements to some sort of rhythm is super fun. And, in fact, that reminds me of what I was just saying a couple episodes ago about Atia and the blacklight and how we were all dancing to that big, gross motor movements to music. Absolutely. I could not agree more.

00:08:03
And different types of music. You can go slow and you can go fast, and you can do an interest inventory to find out what kind of music do you like, and you can vote on it and all sorts of cool stuff. And you can stop it and play it and stop it and play it and. Awesome, awesome, awesome idea. All right, I got another one.

00:08:21
You know, because when these slides come up in our presentation, there's pictures. And those pictures, some of them are of me in costumes. I always feel like dressing up in some sort of a costume is fun, you know, either being a character or not. It doesn't have to be a character that people know. It can just be random, wacky stuff.

00:08:42
I have a quick story. I don't think I shared this story on the podcast yet, but. So my family was going to the Renaissance festival. Did I tell you the story about the Renaissance festival?

00:08:52
I don't think so. Tell it again, because I don't remember.

00:08:56
Okay, so we go to the Renaissance festival, and it was Melissa, Maggie, and I at Tucker Wizard College. And our school district, by the way, just got a brand new superintendent, brand new to our school. Haven't met him yet. So we are gone our way to the Renaissance festival. We say, hey, let's stop at Starbucks.

00:09:14
Let's get some, you know, let's get some Starbucks for our ride out there. Okay, we're gonna do that. And also, oh, by the way, Rachel, we always dress up in costume for the Renaissance festival. And this particular weekend, it was pirate weekend. And so I was wearing a full blown pirate outfit with a skeleton parrot sewn onto my shoulder.

00:09:37
I had Johnny Depp, like, eye makeup, right? I mean, I was. I was full. And so we stopped at Starbucks, and Melissa, Maggie, like, are you going in? Are we going through the drive through?

00:09:49
I'm like, I'm going in. Like I dressed up. I'm showing it off, right? So I start. I march in.

00:09:53
They're like, we're not going in. Like, okay, I'll do it. So I go in to get our order, you know, like the pickup, and who's sitting outside the Starbucks, you know.

00:10:02
With his dog and his wife, the.

00:10:04
Brand new superintendent, who I haven't met yet.

00:10:06
I was gonna say it was Johnny Depp. It was Johnny Depp.

00:10:09
No, the new. The new superintendent. And so I'm like, well, here we go. Like, do I or don't I? It's like, of course I've got to do it.

00:10:18
So I walk right up to him, full blown pirate outfit, and I go, hello, sir. You're the new superintendent, right? And you should see the panic on his face as this pirate walks up to him, like, I'm your assistant technology specialist. And he's like, oh, thank goodness, right? And then we shook hands and laughed.

00:10:35
And forever onwards, he will remember, you know, me as the pirate guy, which maybe is a good thing. I think that's a good thing. It's a way to remember when you think he's meeting, you know, thousands of people, family members. That's a way to stand out. But more importantly, what would he do when he went home that day and he talked to his kids?

00:10:53
If it was just a regular Starbucks run for him, it would be like, how was Starbucks? It was good. You know, the weather was great. Like, you wouldn't even remember it. But forever, always, he'll come home and he'll go to his kids or his wife.

00:11:05
You're not gonna believe what happened to dad today. This pirate guy came up, and he had this parrot that looked like a skeleton, and he approached dad, and it becomes something that generates language. It gives people something to talk about. So, long story short, costumes are the way to go. All right, your turn.

00:11:24
When you said Starbucks during that story, I was like, caffeine is something that adults find really fun. I was like, oh, yes. Yes. We're going to Starbucks. Ooh.

00:11:36
Okay. My next one, Chris, is games. I feel like games are always super fun. We can gamify things that aren't necessarily a game, and they make it more fun. So I just love creating games, tweaking games, turning things that normally wouldn't be a game into a game.

00:11:56
I feel like games get kids thinking, laughing, strategizing, problem solving, working all these great skills that we want to develop in our students, and it's just fun.

00:12:06
Yeah, and games. If you think back in the history of humans on the planet, every culture has played games, right? Sports in some way, or tabletop games or. And those games. Just real quick, we'd invite you to go back and listen to the Beth poss Tally Kellerstein episodes, where we talk about games.

00:12:27
But one of the important things is that it doesn't necessarily mean competition with other people. Where there's a winner and a loser. You can be competing where you're on the same team, trying to beat whatever the thing is, the clock, right? Where you can try to work together to get something done, like an escape room in a certain amount of time where you're not trying to beat somebody else. So it can be a very collaborative experience that also generates language because you're talking with each other, for sure.

00:12:56
Games and video games on top of that with esports, you know, that's a thing. I've been. You and I have had conversations outside the podcast where I'm like, I really like esports. I've been trying to learn more about it. So, yes, games, I could not agree more.

00:13:10
All right, Rachel, you said music. I'm going to level that up. So we've got music. That's a form of artistic expression. Let's go with getting dirty.

00:13:21
Let's get with painting and getting your hands into the muck and painting or grabbing different sort of paint brushes, whether that's something that, you know, you use with your fine motor abilities or some giant gross motor. Grab a pool noodle and drag it around on a surface. All sorts of different ways to express yourself through. Through art, with painting and drawing and making marks on papers and walls or your. Or someone's skin or, like, I love, like, the idea of putting, like, a little paint on my face and kids going, oh, mister b, what's that you got right there on your thing?

00:13:59
What's that face? Yep. Why do you have paint on your face? So all that kind of stuff, I think, is fun.

00:14:05
I feel like that reminds me of when I've had some cuts on my fingers or a band aid somewhere, and it's all my kids talk about. See, they're just like, what happened? What's going on with your hand? They're just staring at the band aid. I'm like, if only I could have this level of attention with whatever it is that I'm trying to do.

00:14:26
It was just so funny that kids are super perceptive, and I feel like those small tweaks of surprise, like, an element of surprise, which is. That's mine now. An element of surprise. I feel like surprises are fun, like, not knowing what to expect and being surprised in any way that that kind of manifests. I feel like there's ways that we can just generate lots of surprises in subtle ways with our students.

00:14:54
And I think that everyone. Some people say they don't like surprises. I feel like all the control people are like, no, I want to always be prepared. But I think there's always, like, an element of surprise is fun, and it always gets people laughing and having a smile on their face, even if it makes them a little uncomfortable. And for sure, kids love surprises.

00:15:15
Kids love, like, oh, my gosh, what is this? Like, I wasn't expecting it yeah.

00:15:19
You know, it's a fantastic strategy to help people learn what to do and to expect the unexpected. Like a surprise is we have these visual schedules that we use to help people understand what's coming next in their day. Right. So imagine just some question marks, and when something unexpected happens, you plot that question mark up there, oh, my gosh, the lights went out today or that that chair fell over or the pencil spilled on the ground, which, you know, you can manifest those things in a way that is an opportunity to teach the unexpected. Right.

00:15:53
So it doesn't have to be, like, inauthentic, necessarily. You can do something to prepare somebody in that way so that they can come to enjoy those surprises. If they're one of those people that's like, I don't like surprises. They're scaring to me. They're scary to me.

00:16:06
Well, here's how you can learn to like them.

00:16:09
Build in some room for unexpected things. Because I'm thinking especially about a lot of my autistic students. They're like, I like to follow the routine and I don't like when things change. But I feel like those students, if you're surprising with something fun and interesting, are more likely to be okay. So it feels like a great way to kind of start incorporating changes and shifts and things that are unexpected happening throughout our day and our schedule, making sure that that is a fun thing versus like, oh, actually, we're not able to go to recess today because we have an assembly or something, you know?

00:16:48
Yeah, womp womp. Unexpected always means bad, but it doesn't have to be that way, right? Unexpected or surprise can be good. Flood with, with goodness. All right.

00:16:59
Well, I feel like we did a good job of bringing the fun and talking about some fun things, but that's just you and I in a few minutes, right? Let's invite everybody to send your ideas to talkingwithtechmail.com or beyond any of our social media handles. If you are in the Patreon, you know, go over there and tell us, you know, on any post how much fun you think this could be or whatever, what you could use the posts over there for to bring the fun all those different ways. Please communicate with us about what you're doing to make learning fun.

00:17:36
Yeah, I love that Chris and I feel like we can all benefit from when people share about this fun thing that they did. That's why it's one of my favorite parts of our ta, our full day course, because we get to hear all these ideas and I'm like, wow. Like I would have never thought of that. And so it's really great that we're sharing and I would encourage everyone to share and you can and share on our social media. I feel like a lot of people, Chris, have been sending us DM's and stuff on Instagram and Facebook, and that's always a great way for us to kind of connect with our audience.

00:18:08
Like you said, Patreon would be another great place to kind of share because we're all looking to have more fun in our sessions, in our work with students, and we can help give each other ideas and inspire each other.

00:18:23
You know who really brings the fun?

00:18:25
Bob.

00:18:26
Bob, our interview today. You had the pleasure of interviewing Bob. I have been Facebook friends with Bob for many, many, many years and just got to meet him for the first time at Atia. I guess. Was it this Ati or the last one?

00:18:40
But you know, I got to give the guy a hug, right, because we became friends over Facebook and then got to see each other, so. But you interviewed him.

00:18:49
Yeah. I had the pleasure of sitting down with Bob Sagoo. He is in the assistive technology space. And like you, I've been friends with him for a while on social media and we had the pleasure of meeting him at Atia. And I was like, come on the podcast.

00:19:06
And he is the parent, actually, of a young man who uses AAC and shares all about his journey as a parent. It was a really amazing opportunity to get insight into, you know, the things that came up during, you know, the initial stages of AAC and just really compelling and really just so great to hear about his experience as a dad and especially now that his son is, you know, going into adulthood, having the ability to kind of have prepared him. And I was like, I want your son to come on the podcast. So I'm hoping that we can have that and make that happen. But without further ado, here is the interview that I did with Bob Saku.

00:20:05
If you enjoy Talking with Tech, we could use your help in spreading the word about the podcast. Please take a moment to leave us a review on iTunes. The more positive reviews the podcast gets, the easier it becomes for others to find it. The more people who find the podcast, the more the word spreads about how to effectively consider and implement AAC and who doesnt want that. If that sounds good to you, please take a moment and give the podcast a quick review.

00:20:27
Wed so very much appreciate it. Now lets get back into the episode.

00:20:40
Welcome to Talking with Tech. I'm your host, Rachel Madel, joined today by Bob Sagoo. Bob, I'm so excited to have you here.

00:20:47
I'm excited to be here. I'm excited to be on your podcast. It's been a while. I've been waiting very patiently, but it's crazy to be on at this rather early or late hour of the day here in the UK. But it's great and a pleasure to be on.

00:21:02
Yeah. So just start off by introducing yourself to our audience and tell them a little bit about you and your AAC journey. I'm really excited to dive in.

00:21:12
Okay.

00:21:12
A bit about me. Well, I've been in the industry, as it were, for a while, but first and foremost, I am a parent of a young man. I have to say young man because I keep saying child. He tells me off, who's an AAC. My son's name is Harshi.

00:21:33
He's 17, soon to be 18, but is very opinionated for his age. And, yeah, first and foremost, I'm a parent that's tried to facilitate and support.

00:21:49
My child or my young adult, as.

00:21:51
He is now on his AAC journey and trying to find the best solution for him that works for him and works for his life, which I think you managed to succeed. It's been a few bumps in the road, but we've managed to do it.

00:22:05
Mm hmm.

00:22:06
So I want to kind of start off by just, like, hearing about the journey towards AAC because I feel like, you know, especially for a young man who's 17 going on 18, you know, 18 years ago, things with AAC were very different. And so I'm really curious about kind of that whole process, like, how are you introduced to AAC? What did all of that look like?

00:22:30
Sure.

00:22:31
I mean, to give you a bit of background as such, and I may. My voice may crack a little, but bit. That's just. I'll have a swig of water. That's just a dramatic effect, but here you go.

00:22:42
So if I start from the very beginning, Hartsch was born, had normal birth. There were no issues at all. I was born a healthy baby boy when he was four months old. We traveled to visit my parents in Spain. We have a family villa in Spain.

00:22:59
And whilst he was there, he fell ill with what we discovered to be a viral encephalitis. So that resulted in him acquiring some lesions on his brain which affected his gross and fine motor skills and his speech. So having gone on holiday, which was only supposed to be a ten day holiday, it turned into a three month stay. There were a few times where we thought we might have lost him, but he managed to pull through, but unfortunately.

00:23:29
He acquired these lesions happen, and he.

00:23:33
Acquired space where he was left with acquired CP, cerebral palsy. And that, again, affected his speech and his gross and fine motor skills. So he would come back to the UK with a trial with that particular time complex needs, really not knowing which way was up. But with him, he was incredibly alert for everything that he'd been through, the ordeal he'd been through, but he was already communicating, or trying to communicate. And what I noticed straight away was that his eye pointing was very, very not accurate, but he was able to sort of.

00:24:14
His eyes were very expressive is the best way to describe it. And he was using those eye pointing to effectively communicate. So I started looking at ways and means to harness that ability. So I used to work for Siemens medical in the digital imaging, medical digital imaging imaging sector. So I was familiar with technology and it.

00:24:37
And how that helped, as it were. So I started looking at, you know, really it space solutions, high tech it based solutions that would help, you know, help with his ability to communicate and to express himself and he thoughts, feelings and so forth. So when he was about three years old, and I'm sure my age now, he had his first go on eye gaze. Very, it was a really. I remember it coming out in a trolley and it was a Toby, I guess, I think at the time.

00:25:05
It's called my Toby, whatever is this huge screen. This big, thick cable came out of it into a tower pc. And as I was. I was talking to that technician. They got him set up on the eye.

00:25:16
Guys, I was talking to the technician, but as. As parents do, you're looking at your.

00:25:21
Child in the corner of one eye.

00:25:23
And I was watching him and he navigated a book on this page on the screen, ready? Reading from left to right, and then turn the page over. And he was about three and a half.

00:25:34
Wow. So that was it.

00:25:38
That was like, okay, that this works. This is what I can see the potential of this. So it's just, it was then a question of finding a medium that would suit him. So I gazed is what I looked at. And.

00:25:50
And, you know, to cut a long story very short in that respect, he's. He's been an I gaze user since the age of four years, years of age. He's an incredibly accomplished, I guess, user. He's gone through all different types of hardware and software, and he's aided him in communication. His education, he's gone mainstream with his education.

00:26:12
It's really helped him in so many different ways. He's gone from the very basic sort of graphical sort of communications, as a lot of people know, like supercore and so forth. He now uses a mixture of this amalgamation of different types of communication because it's whatever suits him. And he likes to use. Sometimes he likes to use text based communication, like fast talk and so forth.

00:26:40
So he uses the grid three ecosystem of communication solutions over the guards to grid sets and so forth.

00:26:48
But he's.

00:26:49
I've now let loose on social media. So he's on WhatsApp, he's Instagram, and he's using the messaging on both of those platforms to great effect and hassling me a lot. But his communication has come on in leaps and bounds.

00:27:03
And, you know, weird as it sounds.

00:27:07
He'S now seemed to be 18 years of age. We're noticing through. He's just this real upturn. Kirby's in his communication last, I'd say, two years. He is actually starting to vocalize now.

00:27:23
So there are actually starting to vocalize a lot more. So people say, oh, you know, if you go the high tech route for communication, that has an impact on our child's vocabulary, it's not the case. You know, what? It stimulates them, it gets them interest, it gets them engaged, and then it just sort of, like, it snowballed from there. So, yeah, it's something that I've known this over the last.

00:27:46
Certainly over the last eight to ten months. He's vocalizing a lot more, which is great. But, yeah, his ASU journey has been.

00:27:56
Really, you know, we've been lucky.

00:28:00
He's been very lucky and very fortunate to be able to come across people that really helped him and supported him. So the likes of Toby Dynavox, the likes of Smartbox here in the UK have been incredibly helpful and supportive and therapists as well, that he's been. That have been engaged with him and supported him. So he's been a very fortunate young man to got the access to the help that he's. He's received, as it were.

00:28:27
I'm really curious because, you know, it sounds like you. Well, first of all, he was really lucky to have a dad like you who was, like, really determined to figure out some type of solution and who didn't feel overwhelmed or daunted by technology. Um, it feels like he was a really early adopter of eye tracking technology. And I'm really curious, like, what did that journey look like? Because it feels like trying to find therapists, you know, at that time who were familiar with eye tracking, who knew how to use it.

00:29:00
Like, what? What did that whole experience, what was that whole experience like?

00:29:07
I'd say people say you have a passion or you have a. You know, you want to find a solution. It was an obsession with me. It was an obsession. I saw the potential in.

00:29:22
In him about being able to communicate, him be able to sort of express himself, him being able to say yes and no, off, you know, on his own. Yes. He's using an eye gaze to y. So it's kind of like indirect, but for me, it's direct communication.

00:29:37
But I just thought, well, okay, that's.

00:29:41
I know blinkers when I do stuff in that respect, so I had to bleed the blinkers on. Okay, my gaze is going to work for him. I've seen the evidence firsthand. I need to find a solution that will work for him. I need to find the software that is going to be intuitive enough to move with him as his skill set improves.

00:30:02
It will move with him, as it were. And I just saw different manufacturers out. I just said, okay, I need to find out as much as I can about the subject. And they did. And again, I can't emphasize enough.

00:30:16
I was very fortunate to find people at that particular time where I gauge when it was in its early sort of infancy, as it were, that were eager to help and eager to support. I didn't really have to do much on twisting. I had to do a little bit, but then I'm not the smallest of people, so I don't have to do too much. But no, it was really cool. And there are people that are still involved in harsher development now to this day, still know him, to talk about him and still, you know, keep in touch.

00:30:48
So it's been, you know, I've been incredibly appreciative of all the help and support that he's. He sort of received.

00:30:55
What would you say was your biggest challenge as you were kind of going through this process with him?

00:31:02
Honestly, it wasn't so much the communication side of things. That's what we're talking about today. It was all the other stuff that I had to carry around with me if I wanted. I touched on it somewhat, as it were. So he fell ill in 2006.

00:31:24
So I pretty much, for at least ten years, was battling with basically a daily feeling of melancholy, pretty much from when I get up to when I get a bed. And that really didn't subside.

00:31:38
So there was a lot of things.

00:31:41
I was wrestling with personally. That's sort of why I just put to the back burner, said, okay.

00:31:46
It was all my energy, all of.

00:31:48
My focus was on his communication set up, so he was able to show what I knew, what he was capable of doing, but also giving him the avenue of what I think that a special school environment is great, but from a cognitive perspective now, the key thing with Hartch is he has no learning disability. So cognitively, there is no impairment with regards to his ability to learn and understand and so forth. So mainstream was, was the avenue that had to, that I thought was best for him. And then I quit my job at Siemens to make sure that I could get him what's now called ehps, or ieps, as it were. They were called statements back in the day to get him statements of, to get him into mainstream.

00:32:34
And again, I was lucky to find people that were willing and saying, look, you know what, we'll give an opportunity to this individual, to this child. And I'm not trying to sort of like singing sprays, but he paved the way in where we are in Nottingham for other children with significant needs, with complex needs. He said he sort of blazed the trail and others have followed behind him in mainstream now, which is really, really cool from really sort of like, you know, sort of like, I don't know what you call them, kindergarten. Effectively all the way through to college. He's at college now.

00:33:15
He's doing, he wants to do graphic design. So he's paid the way all the way through. So I just see myself as a facilitator. But, yeah, going back to your original question, those are lies I'm going to deal with at the time, and I probably still am to a degree. So I'm finishing with this.

00:33:32
But, yeah, it doesn't stop. And that feeling of melancholy, it comes and goes. And I think that was the thing I was going to say to anybody that's listening and that's part of the reason why I try and talk as much as I can, is that it's okay not to be okay. It's okay to second guess yourself. There's a lot of stuff we as parents for children with complex needs we have to carry around.

00:33:56
And I always made a point of thanking everybody that interacts with arch by also Satan. Look, give us a bit of slap. Because sometimes you come and see us and we haven't done this, we haven't done that. It's not because we don't want it, it's just that we've got so much to deal with, so much like, process that there are some days that, you know, I just really do suck. Sorry, it's.

00:34:24
Yeah, sorry, go on.

00:34:28
Yeah, no, I think that what you're speaking to is, I'm sure, a shared experience of any. Any parent who has a child with complex communication needs. And, you know, I love that you said it's okay to not be okay. I think that so often, you know, educators, clinicians, we're so kind of laser focused on what we want as far as goals and targets and ieps and all those things that we, you know, have pretty high expectations of families and, you know, recognizing that there's a lot behind the scenes that we don't know is going on, especially when we're thinking about kids that have medical needs and complex bodies. There's so many other things to kind of juggle as a parent.

00:35:22
And I love that you kind of highlighted that, because I think that we have to give parents a lot of grace when we're working alongside of them and always kind of assume that it's not because they didn't want to or don't care. It's because they are putting out other fires.

00:35:40
Yeah.

00:35:41
I try and use the circus act analogy, the act where the person is spinning in the plates. You're spinning all these plates, trying to stop them from dropping. And often is the case, a few will drop and it's hard to keep all the plates spinning and moving, as it were.

00:36:04
I'd say that, yeah, it just.

00:36:11
It gets easier. I mean, for me now, if I'm a parent now in a situation where I'm looking at, okay, what does my child's communication look like? Whether it's looking at a low tech solution or a high tech solution, there is so much, so many options out there, so many avenues you can explore. I'm going only back ten years or 15 years ago. It wasn't as straightforward as it was as it is now.

00:36:41
And that's not saying it's any easier now, but there's a lot more information accessible to parents. Before, it was you relying on a therapist telling you, okay, this is what's open to you, this is what you can access, okay? Whereas now you can actually go online, you can talk to people like yourselves, another therapist or anybody else in the sector and get information. You can gain information so easily now and become really informed, whereas before it was incredibly difficult and you were pretty.

00:37:14
Much not the mercy.

00:37:16
That's probably not the right way to say, but you were kind of sort of dictated by, you know, we call them speech and language therapists. So you come, obviously pathologists in the US, but you were sort of reliant on what system they were using.

00:37:28
I said, well, I think need to use.

00:37:30
That's not probably a fair analogy, but this is what we use. This is what I think is good for your trial. Not really knowing anything else. Now, there is a lot of choice. And I would say, you know, we talk about empowerment for our young adults, for our children with complex needs.

00:37:46
Parents need to feel empowered. You know, you said, I'm not one of sound bites, but I'll say this. In any situation, as a parent, you are the expert when it comes to your child. I respect therapists, professionals because of the effort, the work that you've put in, the experience and everything you've gained. But when it comes to your child.

00:38:11
You are the expert.

00:38:13
So don't be afraid to sort of.

00:38:15
Like, you're their advocate.

00:38:18
You speak on their behalf until they find their voice and they're able to express themselves. So, you know, feel empowered to see, I'm not the most outgoing person. I'm not the most sort of, like, I can be easily intimidated, but when is your child, it's okay, I got a park, all that. I'm there for them. I'm talking on their behalf.

00:38:37
I need to know what's best for them. I know what's best for them. And it's a fine line of, okay, I know it works.

00:38:44
But also taking on board what the.

00:38:47
Therapists are saying as well. So it's finding that happy medium, as it were. And unfortunately, I've been able to navigate it reasonably well without offending too many people.

00:38:56
But again, you know, I know my son.

00:39:00
I know what works with him. I've known that from a very early age. And, you know, I'm his. I'm his biggest fan. I'm his strongest advocate and his biggest supporter.

00:39:10
So, you know, if I think there is a system that I want to look at, and that goes beyond his communication, that goes to, you know, partially with chairs, with any aspect that your child or young adult needs to look at, feel empowered enough to say, you.

00:39:24
Know what, I want to look at other options.

00:39:27
I want to look at what I think is best and ask the questions and ask, you know, and seek different solutions if you're not happy with what's, what's presented.

00:39:36
Yeah.

00:39:37
And I'll add on to that. Just like I always tell families to just follow their gut because if something doesn't feel right, it. It's not right for your child and your family. And so I feel like so often, you know, I have families who come to me in my practice, and they're like, you know, like, we've been working with another SLP and it just hasn't felt right this whole time. And we just don't think it's right.

00:39:59
And, like, if it doesn't feel right, it probably isn't right. You know, I feel like. But again, we're kind of in this society where it's like, well, you go to a professional and you listen to what a professional says and a professional tells you what to do and how to do it. We're so blessed in 2024 to have access to so much information that, you know, that in and of itself can feel, I think, overwhelming for families and parents. Um, but, you know, starting to just learn about this and, you know, as you mentioned, Bob, like, you know, you're like the quarterback of this team.

00:40:34
Like, you're the thing that never changes. Therapists will come and go, teachers will come and go. It's kind of like a revolving door, as I'm sure you've experienced. So at some level, like, in order to truly advocate for your. For your child, you need to understand at a high level, you know, some basic information about what options are there, knowing how to ask the right questions and kind of, to your point, not being afraid to speak up and to ask those questions and to challenge something that doesn't really sit well with you.

00:41:05
Yeah, ieps, as they are now known.

00:41:09
Yeah.

00:41:10
They can be, you know, incredibly daunting situations where you're sitting in your room surrounded by all these professionals and they're all looking at you and they're all giving their report, and your child, you're all thinking, okay, wow, no, I don't agree with that, or don't agree with this, or that's not right, or this isn't right. So it is very daunting, I understand that. And if there's any way of making it easier, it needs to be done, because I've been in those situations and it is, even for me sometimes it's a little bit kind of overwhelming. But what gives me a helping hand in that respect was I had complete faith in what I knew Hart was capable of doing. I'd invested that time.

00:42:02
I thought I knew well enough to know, ok, I can question that. I can question this. And I did it in a respectful way. I didn't really stop arguing with people as such. I just, you know, again, this is probably where my experience as such in life has brought the skill sets I developed, the men that I commediate quite well with these different elements.

00:42:24
When we all got on well and getting everybody all together, going in one direction was really key in getting Hartsch to where he is now, which is he's doing really well and enjoying himself and, you know, expressing himself, you know.

00:42:41
A bit too clearly now.

00:42:45
I love when we get to that point where we're like, oh, wow. Like, we did such a good job at teaching communication that we've unlocked something here that we can't go back and lock back up.

00:42:57
Here's a really interesting sort of, like, transition, you could say, in that he's now, and I'm seeing this a lot, he's now developed his communication to the way he feels comfortable being in any scenario, in any situation where he feels he can interact comfortably with people he's never met before in any sort of environment. He is now looking at, okay, what's next? What's the next frontier? That I need to sort of like, you know, not to conquer, but to get over.

00:43:28
And it is now, okay, what do I.

00:43:32
What am I able to control in my environment? What do I want to control in my environment? And that's not just the simple things of turning a light on and off.

00:43:39
It's, you know, answering the ring doorbell.

00:43:43
Soon at the door, letting them in. Looking at his bank account, he's got shares, his short share portfolio. He's doing better than I am, but there are other things that he wants to do. He likes to turn the shower off or put it on the cold shower, which is really frustrating for me, but he does it from his computer downstairs, from his eye case. It's these sort of things that now he wants to be able to do.

00:44:10
And it feels like that's the next journey for him is I've established my communication. I now want to get out into the world, but I want to be able to do other aspects as well. I want to be able to control the environment around me. I want to have a lot more access on my computer to do other things. And he's got into gaming all sorts of different really cool stuff.

00:44:35
That's great. I'm actually looking forward to one aspect is not over. It's sort of like it's moved to one side. It's running in parallel with the other aspect, which is his independence and how he wants to sort of navigate around life, as it were. So it's an interesting start, is the aspect to his journey as well, which is really cool.

00:45:00
Yeah, that's really awesome to hear how he's kind of been on this path towards language. And this is often the people who are listening to this podcast, they are supporting individuals on that path. And it's always so inspiring to kind of hear when someone has reached, you know, a level of language where they feel totally comfortable and confident in engaging and having conversations with new people in new environments. And so I love to hear that. And I think you're right.

00:45:38
It's like this kind of new frontier of, like, what else can I conquer? What else can I do here? What else am I interested in? You know, how am I going to keep challenging myself to learn and keep growing in independence?

00:45:50
Yeah.

00:45:51
Yeah. It's a cool thing to see, but it was a long journey here. And again, we were really fortunate. He was fortunate. I was fortunate to meet really good individuals on the way and to connect with people that were really, you know, can see the potential in him and move on.

00:46:16
I mean, there are other individual situations where perhaps individuals don't have that cognitive ability, as it were. And it is a struggle. But sometimes I think now more than ever, there are ways and means, whether it's high tech or low tech, to able to harness the ability for someone to actually communicate, even if it's just, you know, yes and no, or just some. Some really simple communication. But from a parent's perspective, I haven't heard him say dad.

00:46:45
He'll say mum a few times. He's not saying. And that was saying.

00:46:48
He calls me Bob.

00:46:53
Because I look, I'm on a bit of the big side. He keeps calling me po, as in kung fu panda, the character, because I.

00:46:59
Look big like that.

00:47:00
That guy, right? But he's not said that. Now, I know he says it, I know he thinks it, but it's something.

00:47:08
That he's not said.

00:47:10
Would I like to hear him say it? Any parent would like to have their child vocalize and say that. But for me, it's not that important because he says so much with his eyes. So I know it's something that I don't need to sort of like, I'm not holding out for it, but, yeah, the parents want to be able to, you know, to just have basic interaction with their child, to know what they're thinking and feeling as such. And even if it's single word communication, if there's any way of doing it with their eye gaze or switch access or any sort of either high tech or low tech, you know, explore all the options.

00:47:48
And that's why I say, you know, whether your child has a disability or not, invest in them, because that's really, you know, where the payoff is down the line for them is to invest in your child sort of like you know, learning and development, as it were.

00:48:02
So whether, you know, I think I'd.

00:48:05
Probably be the same if harsh wasn't, didn't have the issues that he had. I'd invest so much time and effort into making sure that he'd got the best of opportunities to go on, and that's no different now. So that's why I was sort of.

00:48:16
Like, you know, you know, if I.

00:48:19
Was going to pass any advice, just invest the time. The great thing is you don't have to go hunting around for information. It is there at the end of tapping a few keys on the computer. And if not parents, other parents are.

00:48:31
Great resources for information if they're trying.

00:48:35
Something that really works. I used to do that in the beginning is talk to the parents, what are you trying? What's working, what's not working? And if it's something I've not heard about, I'll look into it. But, yeah, there's a lot more information out there that you can get into and lots of organizations.

00:48:49
I'm not just talking in the UK, but internationally as well. There is a lot more awareness of. Yeah, support and communication available. So, yeah, it's just look for it.

00:49:01
And you'll find it.

00:49:03
I love it. And I love the fact that you mentioned kind of finding community with other parents, because I feel like finding anytime anyone, you know, is going through anything where it feels like a struggle, I feel like knowing that you're not alone and having that shared experience is really powerful. And so, like you said, finding other families and parents who have, you know, been through similar experiences. Experiences can be really powerful. Is there any, you know, I'm curious.

00:49:35
For parents who are listening, who feel hopeless, like, this feels like such a huge mountain to climb, and I'm right at the very beginning, is this possible for my child? What advice would you give to them? What words of encouragement would you share for, you know, a family who's just starting off on this path?

00:49:58
Probably not what you want to hear, but.

00:50:05
That feeling that you get that 03:00 in the morning, wake up worrying.

00:50:12
And thinking, what's the future going to be like? I love to say that gets better or goes away. It doesn't. It stays with you.

00:50:21
But what I will say is that if I go back ten years, what.

00:50:27
Fed into that fear was not being aware of what's available. If you do a little barista, just ask the question. Look, there is a lot more information out there. There are a lot more solutions out there for childs of varying levels of ability and complex needs, as it were. So don't get.

00:50:50
It's a horrible thing to say. Don't get disheartened. You're entitled to feel that way. It's like I said, back to what I said before, it's okay not to be okay.

00:50:59
But.

00:51:02
I'm a poster boy for that, I really am, because there are times that I've struggled. Fortunately, every time Ata runs around, there's always something I'm having to deal with. Regards to Arch, last year he was diagnosed with type one diabetes. I'm going to manage that. And then he had a bit of.

00:51:18
A setback this year.

00:51:20
So there's always something that's going to.

00:51:22
Be there, as it were.

00:51:23
But what I'm hoping is, and what.

00:51:27
My message is now is that, look.

00:51:30
My motivation was to find a solution for my son, for him to be able to communicate.

00:51:35
I feel that I've gone a fair.

00:51:37
Amount of way into achieving that, and he has. He has to give a. Take a lot of credit for it. I can't. He's.

00:51:42
I take a lot of credit for it.

00:51:44
But my next objective now is very much to speak to parents and let parents say, you know what?

00:51:49
It's okay to feel like, perhaps, excuse.

00:51:53
My language, to feel like I can't see any way out of this. All I would say is that there are options there. There are opportunities, there are solutions there. It's not you again, you're entitled to feel that way. But I've seen individuals that have given up on.

00:52:12
I gaze given up on high tech solutions. I've come back into it, whether it through gaming or a fun activity, and come back to it with a renewed interest, with a new desire to try it and be really successful and taken off with it. So, you know, I just say there are a lot more positives out there. It sounds an odd thing to say. I know that feeling.

00:52:33
At 03:00 in the morning, you wake up in a cold sort of thinking, what the hell? What's the future going to look like for my child or my young adult?

00:52:43
Yeah.

00:52:44
How are they going to be able to navigate through life? And I say things are getting better.

00:52:48
Are they where they should be?

00:52:50
Absolutely not. But they are moving in the right direction. But there are so many options out there. So in avenues, you can go down to find a solution that will work for you, not just for your child, but for you as a family, because that's sometimes overlooked. It's like, okay, when I adapted my house for harch, I didn't want it to scream the obvious which is like equipment everywhere.

00:53:13
I wanted to feel like a home and I made sure that when I designed it, it looked like that. But people still blown away with, how does it get up the stairs? They have no idea. There is a through four lift in the house, but they can't see it. It's hidden away.

00:53:24
It's designed that way so it doesn't look obvious. So there are ways and means to navigate things, and it's great to look at it from the individual's perspective, the child.

00:53:39
But, but if you're a family unit.

00:53:41
It'S going to work for you as a family as well. And, you know, we're, you know, been fortunate in that respect to sort of like to have a support system in place for hearts that, you know, that's continued with him and it's going to give him the independence that he sort of thrives. I like to make it, we have a running joke, him and I, in the sense of like, he doesn't live with us, we live with him.

00:54:05
And so that's, that's pretty much though.

00:54:08
He has made overtures of saying, I want my own place now, which is sort of like, you know, a bit.

00:54:15
Strange, but, and, you know, and the.

00:54:20
Other thing I'd say is, look, there are milestones. Whether they are small or big, they're milestones. Celebrate them. Really celebrate them. It doesn't matter if it's whatever it is, but celebrate these moments because they're important.

00:54:34
They're as important as any of the milestone. So, you know, and, yeah, and try and find the humor. Unfortunately, I'm a very dark sense of humor, so find the humor. Find the time to sort of like, you know, just, just sometimes just laugh at something that's probably not suitable to laugh at, but. And give yourself a break.

00:54:57
Yeah, I haven't learned to do but just go easy on yourself. And, you know, I think as a.

00:55:03
Parent, I, I still give myself probably.

00:55:05
A b minus in that respect.

00:55:07
I think there's more to be done.

00:55:09
But, yeah, don't be too hard on yourself.

00:55:12
I love those words of encouragement, which leads me perfectly into the book that you're working on. So can you share a little bit about that? It seems like it's definitely going to be a whole lot of your experience, but also, I'm guessing, some encouragement for families who find themselves in similar situations.

00:55:32
Yeah.

00:55:33
The catalyst of this is, unfortunately, my dad, who's in his mid eighties and a bit of a nut job, but he wrote his own audiobiography and he.

00:55:41
Got me thinking about would it be.

00:55:44
Helping again, this is tying into what I just said just now, Rachel, with regards to my next objective is to try and help other parents or individuals that have gone through, going through this journey or at the very start of it or whatever stage you're at. So, look, I'm not saying I've got all the answers, but here's my experience. This is what happened to me. This is how I try to navigate it. These are the mistakes I think I made and these are my experiences.

00:56:18
Hopefully it will give you some solace or comfort or whatever the word is I'm really scratching for, but it will give you something to say, you know, what he's managed or they managed to navigate. I can take a little bit of something from that in the sense of if they're able to do it, then great. Have I done it in the textbook way?

00:56:42
No.

00:56:42
Have I made a lot of mistakes? Yes. Have there been a lot of prices I would pay? Yes, absolutely. I've had to pay a lot of.

00:56:50
There's been a huge cost along the way in various different aspects of my life. But when I see my son standing in front of 60, 70 people, presenting at a national conference, which he did a couple of years ago at communication matters, which is a big UK AAC conference, and articulating what his thoughts, his feelings on his journey, then I know I've done something right. When I see him interacting with his peers at college and the confidence he has able to sort of do that, then that sort of like. And that tells me it's been a. It's, it's been a hard journey, but it's a.

00:57:30
And there's been a lot of sacrifice.

00:57:32
And a lot of, you know, whatever.

00:57:35
Is I've had to pay. But it's, it's been worth it. It's worth it to see where he is now. So would I change anything?

00:57:41
Possibly. But, you know, the end result is I've got a confident, assertive, socially aware.

00:57:50
Young man who is going to go on and do some great things. So I'm incredibly proud of him. Don't know if he feels the same way about me, but I'm incredibly proud of who he is and what he's on the verge of becoming. I blink my eyes, he's gone from a little kid to the verge of being a man and it's like it's happened in the blink of an eye. But that's why I thought, I'll do the book, because if someone can sort of like, take anything from that, that's great.

00:58:20
I said that one of my presentations, or when I see people talk to people is that if something I says.

00:58:25
Resonates and helps, then I don't care.

00:58:30
If that puts me in an uncomfortable position, if burying my soul will bury my thoughts or whatever. What's happened, my experiences, I really give. What about that? As long as it helps someone, if it resonates and gives them the. Yeah, well, if he can do it, then there's hope for us as a family or as an individual.

00:58:53
So that's great. I don't mind putting myself on my canvas and it's fine.

00:58:56
It's cool.

00:58:58
I love it. Bob, I'm super excited. You have to let us know when you finish that book. We would love to support you and share it with our audience.

00:59:05
Sorry.

00:59:06
You asked me about waffle. So the book is called. It's called, and it came from an article I did for communication matters journal about seven or eight years ago when Hartch was joining the. We call it the scouts here. I don't know what you call it in the US, but he was joining the scouts and he had to do his investiture, which is, say, an oath, which he used his eye gaze for, and it was a casting report.

00:59:30
And I put the very end line is essentially about here to him saying.

00:59:36
You lead and I follow. And that's the title of the book. You lead, I follow.

00:59:42
Yeah. So we're a double act, me and him.

00:59:46
I feel like I need to have him on the podcast. Do you think he'd be interested?

00:59:49
Well, here's the thing. So his profile is going to be going pretty much through the roof this year. He's doing something, which I can't really disclose just yet, but it'll come out in August that he's doing something really quite cool. He's also developing his own. So you're going to have some competition there.

01:00:11
He's going to look at doing his own podcast, his own sort of blog, and it's called. You probably like this one. It was his idea and we brainstormed a few ideas all about communication.

01:00:24
Love it. Aac.

01:00:28
Wow. I like what you did there. Great.

01:00:33
It came from him. So, yeah, he'll hopefully have his blog set up, hopefully by the summer, and then that's something. He's just going to give him that, that sort of like, avenue that sort of like expressed himself to give his thoughts and feelings and, you know, and his take on a lot of things.

01:00:56
He is an incredibly opinionated young man.

01:00:59
And he has a really.

01:01:01
He has my sense of humor, which.

01:01:03
Is sometimes dark and sometimes not quite age appropriate. So I say I tend to characterize our relationship in the sense of him and I are thunderbirdies, and that comes from a reference from a film that he saw, which you shouldn't really see in that particular age called Ted. But he really loved the film, and we know in his thunderbird is, as it were. But, yeah, there's a lot to come from him still. And watch out.

01:01:29
You've been warned.

01:01:31
All right, well, I feel like, put in a good word for me. Put in a good word to come on the podcast when he's ready. If he has all of his things lined up, we'd love to have him on and support his podcast. So you know that it's an open invitation, and I would love to meet him and to speak with him. He sounds like he's doing awesome things.

01:01:51
He's.

01:01:52
Yeah, I think he's. He'd love to talk to you, and he will bend your ear quite a bit, I'm sure. But, yeah, he's just. It's just exciting. It's like it's on the verge on the cusp of his next sort of, like, step up.

01:02:08
And I said to him, I said, you're gonna do one or two things. You're gonna be really pushing the envelope regards of, you know, what it is you want to do, or you're gonna be some master villain, because your mind works like that on so many different sort of levels. So, yeah, he's. I'm excited to see what he's got in mind next, and, you know, hopefully he takes me along for the journey as well.

01:02:34
Bob, thank you so much for coming on. I'm so excited to share this story and all of your experiences, I'm sure will be really powerful for other families that find themselves in a similar situation who are perhaps just starting off on AAC or have been on this journey for a while. All of your insight has been really helpful. So thank you so much for coming on and sharing.

01:02:57
No worries. Thank you for Talking with Tech,

01:03:00
I'm Rachel Madel, joined by Bob Sagoo. Thank you guys so much for listening, and we'll talk to you next week.