Episode Transcript
[00:00:00] Speaker A: Hey, everyone. Welcome back to the next episode of the Inchtones podcast. I have Shahriar here. He is someone that came into my world through LinkedIn and I realized that when I noticed these three words pop up on his profile Autism Innovation Lab. I needed to know more. And we are going to talk here. This is going to be our first robust conversation that he and I have ever had. And a lot of times those are where the best nuggets, I believe, rise to the surface that I always want to share with you all as listeners and fellow parents, mothers and caregivers of children with severe autism. Shariar, thanks for being here today.
[00:00:37] Speaker B: Thanks for having me and thanks for doing this. It's always nice to meet other parents around the world doing something to bring awareness and share information and share knowledge and bring hope to families. Families. Whether you have, you know, level one autism or moderate or severe or profound like we do, my son is 17 now. He's non verbal.
I always tell other parents and they always know what that means when I tell them this. We're still able to manage him at home, but I don't know, one day we may not be able to, oh, I'm not getting any younger.
The number one issue that I hear from parents all over the world is what, obviously you've heard this before, what would happen to my kid when I'm gone, which is really contrary to the natural order of things, right?
[00:01:29] Speaker A: Yeah.
[00:01:29] Speaker B: You think you live a life, you live a life, you do the best you can, you try to accumulate things. I'm sorry to go so petty, but that's the world we live in. And you leave your kid or kids, whatever you have, and I don't know, I want to think that you die happy. Like, okay, I did the best I could. I taught my kid everything I know and I left them everything I have. I can't, you know, I don't want to take it. My time is up. I die happy. But that's not the way autism parents, especially profound autism parents lives work. You.
After the diagnosis, the worrying just begins. It doesn't end. And just like anything else in life, when you're faced with a challenge, as people, we have different ways of going. Either you kind of go into yourself and maybe feel a little sorry and begin to kind of internalize and who knows what, what, how you fall, or you kind of take a look in the mirror and say, you know what, my kid needs me. I, I can do something to leave the world a little bit better, literally. Like Colin Farrell said last year, I Want the world to be kind to my son, you know, I. But I don't care who he is.
Yeah, but it's just that simple. It's just that simple.
[00:02:46] Speaker A: You want the world to complicated it so much. And I know that that's because of the complexities of the grief timeline and the expectations and the conditioned things that we thought were supposed to happen if we just followed this set of guidelines for becoming a healthy, capable, mature adult from the fam. From our family of origin. And you tapped on something when that first sentence you said, which I think about so often.
I never in a million years thought that these early stages of motherhood would last so long ever. Right. I have a typical 12 and a half year old. Those were hard to begin with.
Then you add on this never ending cycle.
There's a real friction point of being able to stay mindful to the present. But the mindfulness in the present moment is really difficult.
So it's.
[00:03:37] Speaker B: It is.
[00:03:37] Speaker A: Navigates this like it's really wonderful with how present we get to be.
And in it lies the heart.
[00:03:43] Speaker B: Yeah. You know I. I failed to mention I have two boys. A 16 and a 17 year old. A 16 year old is neurotypical and he's got all the same teenage problems as anybody else as in the world almost sometimes more challenging because don't know often how to help him as chicken nuggets and a couple of music boxes. With my other son. His world is set.
He is 100% happy and I can manage that. I don't know always to be honest as a dad with the complex world with social media and all the, the high school, middle school challenges the typical neurotypical kids go through.
You know I always tell people they're 16 or 17 my boys, but one thinks he's 40, one thinks is 2.
And it's difficult to modulate as a parent that you mentioned you have, you have neurotypical kids. Difficult to modulate as a parent. How do I. 40 year old, 2 year old, how do I like one thinks he knows everything at 16, the other one is 2 and it's misorienting.
[00:04:50] Speaker A: It is. It's very disorienting and having to reorient all the time to the specific child within that. I mean that. That can again and that creates complexities within those relationships too. I don't. How. How are your sons? Do they interact at all?
[00:05:05] Speaker B: Not really to be honest. You know, look, there's lots of ways relationships could evolve. In one respect, my younger son may be worried that he may have to look after his older, disabled, severely challenged brother. In another respect, we want him, my typical son. Son, to have a typical life to the extent that we can alleviate the burden of dealing with all the challenges of severe autism at 30, 40, 50. Those, those are what parents try to do. They, they don't want to saddle their other kid with, with all that.
[00:05:38] Speaker A: Yeah, no, I, I had my typical oldest, who's 12 and a half, going on 48 as well. She said something and I realized that it was just the fact that she has to ask that question.
Her life is forever changed. She, she said something to the extent of, wait, so will someone help me decide these things?
[00:05:58] Speaker B: Yeah.
[00:05:58] Speaker A: And it was so powerful and I, I kind of took pause and I said, oh, of course, you know, my love. Like, this is something that we will have conversations and they will evolve through the years and things are set in place.
Yet the idea that a 12 year old girl and a 16 year old boy have the thought of that places them in a conceptual spiral that is very different than their typical peers. And I think I'm always sensitive to that because their typical peers are not thinking about this at all.
It's not even on their radar.
[00:06:33] Speaker B: You know, I almost, I always, I know that my neurodivergent son is my responsibility.
And in so many ways, when I die, you know, I want to take that responsibility with me. I don't want to leave it to somebody else. You know, my other son deserves to have his own life.
[00:06:50] Speaker A: Yes.
[00:06:51] Speaker B: And make his own mistakes and live. You know, I always go back and I know Rain man is not the movie to quote always, but every time I think back when that facility superintendent is telling Tom Cruise on the steps, what would you have done if you knew you had an autistic brother?
You know, and he goes, I don't know. I just wish I knew, you know, I mean, so, okay, they know.
But what could I expect my other son to do other than maybe naming him in a trust and a special needs trust as a trustee or an executor of our estate or something like that.
[00:07:31] Speaker A: Those are physical things too. I think it's so layered in deep nuance about the emotional parts that are much more of the what is behind the question of how this lands?
[00:07:44] Speaker B: And so to answer your first question, Autism Innovation Lab, you know, how did that come about? Look, like all parents, like I said in the beginning, you begin to look at what can you do.
You could either internalize and not do anything and feel sorry for yourself or your situation. I never felt that way I always felt like, and I'm kind of a retired public servant, so my DNA is public service. It wasn't like I had to make a big jump into some world. I was involved with nonprofits and public service and community engagement and public engagement practically for 30 years.
Some somehow during COVID I launched my own podcast called Autism Spa. And I was trying to just in connect with people to help. Just like you're doing so well, much better than I. To connect with people and bring knowledge and insight. And part of what I was ended up doing is talking with a lot of startups and innovators in this space. And I, I do, I would just rivet it.
[00:08:45] Speaker A: Yeah.
[00:08:46] Speaker B: I always ask, you know, what's your connection to autism? Because some of some of the people that are innovating in the space have no connection to autism. They're just innovators and they're thinking like they're super smart. Right. Others most often are parents or caregivers. And I'll explain that in a minute. So I kind of got the bug during COVID while I was doing the podcast and talking with doctors and scientists and research. Again, nothing in my field. My background is public administration and politics and government and that kind of stuff. So I got the bug and I started mentoring some autism startups around the world actually. And I began to talk to parents around the world who were doing something, you know, they were tinkering with an app, some gadget. Usually it was an app, something to do to make life better for their kid. And it was all very personal, it.
[00:09:41] Speaker A: Was all like very mission based.
[00:09:42] Speaker B: Well, my kid is not verbal or non verbal and he or she is able to do X but can't do. Yeah. So I created this app or this thing to help alleviate one little aspect of life.
[00:09:56] Speaker A: Yes.
[00:09:57] Speaker B: And everything from finding nannies, especially these nannies. Right. I mean like no one had to explain to me ever in any of the startups I've ever spoken with the validity of the value proposition because I.
[00:10:12] Speaker A: Know true is that like these small little what many would perceive as the micro needs of a parent.
You and I would go, nope, I get it. That that's actually brilliant in comparison. That is alleviate something that might take a few pounds off of my out of my backpack and wonderful. I'll take it.
[00:10:34] Speaker B: Yeah, yeah, that's exactly right. I mean this is exactly the point. And this is why I called my podcast Autism Spa, by the way. To try to alleviate stress.
[00:10:44] Speaker A: Yes.
[00:10:44] Speaker B: For families. Because it's a stressful life, whether you're level One or level three, it doesn't matter. You're dealing with change, and not everyone deals with change very well. So I was doing that and again, mentoring startups. And again I got the bug. And once I kind of retired from government, just up until last year, I was invited to be the exec director of the Autism Society of San Diego, which was a great experience. I learned a lot. I was embedded in the community with support groups. And going back to our earlier conversation about maybe moms and dads, I quickly learned moms and dads process grief differently.
[00:11:24] Speaker A: Men and women live life differently. Shrey.
[00:11:27] Speaker B: They lived their life differently. And I mean, the young moms, you know, would come to somebody's support groups and choked up, not because of the diagnosis.
They were.
They were worried they're not doing enough.
They were beating themselves up. Am I getting enough respite hours? Am I getting enough ABA hours? Am I giving all the stuff that, you know, that you probably have done, which, to be honest, other than asking my wife, it never. It didn't like that. Didn't process with me as the way to adjust to what's happening.
[00:12:00] Speaker A: I think that fathers, again, there's so many layered of, like. Like psychological. The experience of just getting.
Having a child with any diagnoses, I think is processed in the male mind based on our conditioning in the female mind differently. I think that. I think that women just tend to.
I mean, there's. I mean, to paint a really broad stroke. We tend and befriend, right? We seek out the other women that are going through this and try to listen.
It's not that men don't want to. It's just not on the top of your radar.
[00:12:32] Speaker B: It's just. It's just not the way we were brought up.
[00:12:34] Speaker A: It doesn't matter where in this country you were raised out of this country. I would love to get a degree in evolutionary biology because I find this stuff fascinating. I find it fascinating because men and women do. They really do.
[00:12:46] Speaker B: And the men that I spoke to in our support groups, in fact, I started a dadvocate support group.
[00:12:51] Speaker A: Amazing.
[00:12:53] Speaker B: To get the dads organized. The dads looked at the world in a transactional way.
You know, they would come to these support groups and say, you know, now I got to earn a living for two lifetimes.
[00:13:02] Speaker A: Right?
[00:13:03] Speaker B: You know, they're looking at it transactionally, not from an emotional standpoint, of course. Of course they're impacted the same way, you know, their child moms and dads, you know, would not. We haven't had a conversation with our son ever in 17 years, you know, we, we hang on words that he may say in passing, out of context or the, the, the non verbal communication we're able to thank God have with him because he's able to take our hand and lead us to something and thank God, thank God he, he can understand hundreds of words. He just can't communicate and reciprocate the way you and I are used to it. So you know, you, you learn that, you learn what triggers to avoid. You learn what, what, how, you know, parents are resilient that way. And so getting back to that worry that drives a lot of parents and drives a lot of innovation.
[00:14:00] Speaker A: That's right.
[00:14:00] Speaker B: In that I like I know how to speak to my son, somebody else won't. So how do I, how do I innovate? How do I leave the world a little bit better with new technology, new solutions so my son can survive?
[00:14:15] Speaker A: Yes.
[00:14:15] Speaker B: Without me.
[00:14:16] Speaker A: Yes.
[00:14:16] Speaker B: Right. I have. Nobody wants to live forever and we just want to make sure that our kids are taken care of. So all these conversations and talking with parents and seeing the drive in parents and then also seeing frankly the faults, the fact that a lot of small startups, any startup anywhere, whether you're embedded in autism or idd, is really difficult to scale. It's difficult to take one good idea off the shelf that you tinkered with in the garage, whether it's hardware or software, and then make it available on every shelf.
Right Everywhere. Right. Even with Internet. So I kind of got focused on that scaling challenge.
So when I looked at trying to help, wasn't just investing in or being a co founder or partner with a few transformational startups that I, I felt could really have impact in the community. And when I say transformational and I'll go back to the ecosystem that I'm creating in a minute and that is, you know, maybe therapeutics, meds, you know, things that are dealing with the most profound symptoms and challenges of, of autism. If it could be diagnosis, it could be like I said, therapeutics. I don't use the word cure, but of course as a parent of a severely autistic, I want my son to be the best he can be.
[00:15:43] Speaker A: You know, if we, that there's no, there's no revelation that won't allow us to intake information and stay curious. That's, that's always my, my same, I'm charged with the same mindset as you. Mindset and heart.
How do we help and do and help them?
[00:15:59] Speaker B: You want all your kids and this, this is what, what you learn as a, especially as a, as a, as a profound autism parent. Unconditional acceptance.
[00:16:09] Speaker A: Yes.
[00:16:10] Speaker B: Right. It's not like I want him to have all these challenges for the rest of his life. No. I want to be able to communicate, to be happy, to have a life, to be independent. The same thing I want from my other kid, I want for this one.
But in many ways, in the 17 years I've gotten to know my son, autism has become woven into his personality. You know, in so many ways he is a pure hearted.
[00:16:39] Speaker A: Yes.
[00:16:41] Speaker B: You know, joyful soul.
[00:16:44] Speaker A: Yes.
[00:16:44] Speaker B: That is who he is now.
[00:16:46] Speaker A: That's literally full stop. That's amazing.
[00:16:48] Speaker B: Autism as we call it, you know, disability or challenges and the fact that he can't communicate and all those, or verbally, those make him be such a pure and honest and transparent person. And I mean that because I love.
[00:17:00] Speaker A: That you're absolutely, that's just who it is. And I just think maybe, maybe there's, maybe there's a way for it always to be. Yes. And you know. Yes. You want to help. I, I, I think we, as a, I don't know, as an American culture, it's really hard to sit in that very gray space in perpetuity. We just, even if we sit in it for a chapter of our lives, we're like, thank God that that gray chapter is over. Well, we as parents with the children we have that, that's just the norm. That's the, that's the x and Y axis and Z axis. And we are, we are just gray on every way we turn. And it does make you start to realize maybe it's all yes, and, and it's just going to be like that. And it's, I, I don't know if I, it seems to me we probably feel similarly.
It's really evolved my own mindset and transformed the way I make choices.
As a 42 year old, I almost said 30. I wish I was my 30s. As a 42 year old mother.
[00:17:59] Speaker B: Yeah, yeah, yeah, yeah. No, it, it's, you know, there's another aspect. Again, becoming an advocate, a parent advocate like you and others in this field, you, you talk with a lot of self advocates and you learn, you know, it's not, you learn to respect the identity of the people you're dealing with. I mean, look, if, if your son or daughter came out as gay or trans or some other, when I say unconditional acceptance is the whole thing, you know, you know, I don't, I don't get to choose. And, and I often Think about this, about, you know, if you could go back in time.
Because we were concerned about autism before we had kids, too. Like a lot of people, I talk to parents. I'm sorry, couples who are planning to have kids, who are worried that their kids. I mean, this is the world we live in. Who are worried that their kid's gonna be autistic. And they don't know.
This is. One parent told me, they don't know if they have the strength to deal with it.
As if you. And I took a.
[00:19:02] Speaker A: Trust me, trust me. If you saw me in my 20s, you were like, that girl is not ready. She cannot handle this. Dad, do not give her that. No, no, you're gonna give her two. You're gonna give her two. No, no, no, no, no, no, no.
[00:19:14] Speaker B: None of us have went to class for this. We're making it up as we go along. But. But. But to getting to the unconditional acceptance part. And again, I want to go back to what we're doing in the lab, and that is because it's.
To why I'm doing what I'm doing and what's driving every decision I'm making in the Autism Innovation Lab. And that is if I could go back and choose qualities about my son, both of my kids, I wouldn't necessarily say, oh, God, at least just make sure he's not autistic or special. Those are the things I would wish away. I would wish that he could obviously healthy or be able to express, you know, be the best he can be. I would wish he could be a positive force in the lives of people around. I would wish all kinds of things. I went through this in my head for almost two decades, and wishing autism away wasn't like, you know, wasn't like, look, you have parents of down syndrome kids, and they say, look, these kids.
[00:20:15] Speaker A: Are the happiest, most joyful little.
[00:20:20] Speaker B: My autistic son is able to experience pure joy. And then if he's unhappy, believe me, I know it all the way over.
[00:20:29] Speaker A: Yes.
[00:20:30] Speaker B: Yeah. I don't need to guess if he's unhappy. I know exactly. Immediately. And I feel like he's able to experience life without all the baggage that all the rest of us have.
[00:20:42] Speaker A: I mean, they're. They experience it as it is. They experience the world for what it is.
And there is.
There is something. I. Again, having a. Now you have two boys, and my typical child is a. Is a girl. And, you know, we live on the east coast, and we're right outside of New York City, and, you know, she is a New York City born, you know, child. And when I think about the conditions of her life that she's just absorbed and what her siblings quite literally do not care about in any capacity, sometimes I, I mean, I've, I jokingly say, like, you do realize your sister could give like 2 cents about what you're just describing. And I love that. I love that. And she'll say, it's this back and forth dialogue. And I say, that's what I'm saying, that there's beautiful parts of autism, that even as a sibling and as a parent, we can go, God, that's a wonderful way to see the world. It just is.
They sit, I mean, autistic, level one, maybe autistic, higher functioning are known to be deep truth tellers. Right. And they just tell the truth.
And I think that might be what we're more experiencing with our children with more severe traits. They just.
[00:21:54] Speaker B: It'S.
It's kind of nice to be totally honest.
[00:21:59] Speaker A: Yeah.
[00:21:59] Speaker B: I mean, look, sometimes I, I'm shaving or something, I got a pimple on my face and my son comes and puts a finger right on a pimple, you know, or, or something that like something doesn't belong right on your face, on your body. You come right out, you know. Does this makes me look fat? Yes, it does. I mean, exactly. You know, the world can use a little bit more honesty. And I would flip it on, on the non autistic world and say, could you go to work tomorrow and be honest with everyone in work? Because my son can.
[00:22:31] Speaker A: Exactly.
[00:22:31] Speaker B: I don't know who's the same all day long.
[00:22:33] Speaker A: He probably wouldn't last that long in a job.
[00:22:35] Speaker B: It would last so long.
[00:22:36] Speaker A: I always, I always laugh. The story of a real quick antidote. My daughter Millie has like Pantene pro V hair, right? And she could, it doesn't. I could shave it off, it wouldn't matter, right? But she has no care, no attachment to this beautiful strawberry blonde hair. And when she was little, I would put the knot in and with the bow, you know, and she realized after, I mean, I realized quickly that she hated the feeling of it, right? That has now transpired into any bow that she sees on any child she feels that she has to rip out, okay? And I believe that her life and her mission is like, save the bows from all these girls. Like, I ha. That is so annoying to have in your hair. I'm going to rip it out. I can only imagine how annoyed you are. I'm going to take the agency on that and it's become this, like, funny, you know, line of her life is like, she. She's just saving little girls from these terrible hair bows that their moms put them in. But it's just. I think that she tells her truth so deeply of, like. That's annoying to have in your head.
[00:23:32] Speaker B: Yeah, yeah. No, they. Look, these kids and adults see the world very differently. And the last thing I'll say about my son's gentleness is that anything he bumps into, he goes back and rubs to make sure they're okay. You know, and it could be a table, it could be a chair, certainly people. But a door, you know, anything that rubs him, it goes and makes sure they're okay. If he steps to my foot, you know, he. And he touches my foot with his foot to make sure. Are you okay?
The other day, I was driving and somebody cut me off, and I was like, you know, yelling at the.
And he holds my hand and looks in my eyes and holds my hand really tight, you know, in a very deliberate way. Are you okay? You know, I mean, you know what? I gotta tell you, nobody else does.
[00:24:18] Speaker A: That in my life.
Nobody else checks on me. Yes, this one does.
[00:24:24] Speaker B: Whatever we call disabilities, they have other abilities, and they have a certain joy and peace in their hearts that other neurotypical human being could benefit from if they were so inclined.
[00:24:37] Speaker A: But go back to Oxford Innovation Lab.
[00:24:40] Speaker B: Yeah. So I digress. This is, you know, if I have adhd, well, now, you know, the apple does not fall far from the tree. We're all reflections of our. Of our children in some ways. Look, so I. After I left the Autism Society of San Diego, and for years, even when I was a mentor to these autism startups, I always felt like I could help in some way. I could either be an investor, be a angel investor in some of these startups that I thought could be transformational. I wanted to have whatever time I got left. I wanted to have real impact.
Not just. I'm not knocking any cool apps that everybody loves. I'm just saying what could really save lives and change lives.
And so, for example, since my son used to run away a lot and eloping and fell from the second story window, broke his leg once. Police action. Helicopter. I mean, you. I mean, in the pool. You name it. I got a stack of dead iPhones behind me because they were all in my pocket when I jumped in the pool. Right.
The one reason I got into the technology is I wanted to. This is a gizmo wearable that Verizon makes, and I used to work for Verizon. And I kind of began to try to talk Verizon into, hey, listen, can you guys develop more technology to help this community? And to their credit, they were 100% open to it. In fact, they had a disability accelerator to support disability innovation technology that could the blind, the deaf, autistic, you know, I mean, to their credit. So that kind of made me think, wow, how could I bridge this gap between big corporate America and small business parent entrepreneurs? And this innovation lab over the past five years actually began to kind of take shapes.
A few months ago, I kind of launched it. And I've been overwhelmed, to be honest, with the level of interest and support from autism startups. And I mean, biomed, biotech startups, people that want to not experiment, but they have. They want to study meds, therapeutics, obviously you've heard of Leucovorin, but beyond that, other therapeutics to help with symptoms of autism, biomed, you know, These are doctors, PhDs, you know, physicians, churches that have come to me and say, look, we would love some help to be able to, you know, test this technology.
[00:27:19] Speaker A: Yes.
[00:27:20] Speaker B: I'm not doing this is. This is one of the key things. Again, foundational. I wanted to, and I talk about this frequently, but I want everyone to understand, you know, I am very particular in what I begin to work with and engage in because I'm a parent, explain to people I'm not necessarily in the sexy startup world. I'm in the business of hope.
And I'm not going to look at another parent's eyes and say, we wasted your time, your money or your whatever with something that was ridiculous. Like it was never going to change your lives.
[00:27:58] Speaker A: Right.
[00:27:58] Speaker B: Only interested in transformational technologies and biomed and biotech solutions that can really save lives. And I mentioned the wearable device because that's what got me into this business life safety. Wearable device. Right.
[00:28:13] Speaker A: Do you think that it was because of your son that you're able to ask and invest for those apps and innovators that are actually going to transform the lives.
[00:28:25] Speaker B: I talked with a lot of app developers and their cutesy, dotsy little things, and I go, oh, this is like, like, like one. I talked to one mom on the east coast who had spent hundreds of thousands of dollars on an app to help her daughter is like level two or level one or something, you know, to help with their schedule.
I go, okay, that's great.
I'd like to help, but in the time I have left, I'm very cognizant.
I don't think I have any disease, but. But I don't know how long I have.
[00:28:54] Speaker A: Yes.
[00:28:55] Speaker B: I'm 57. How many years do I have to innovate to be able to really get into a handful of life saving, life changing technologies to change lives. And an app that helps you with your schedule, isn't it?
[00:29:09] Speaker A: That's right.
[00:29:09] Speaker B: Just yesterday.
Another. She's actually in New York. Maybe you've heard of her. Sensational you.
She makes.
She makes sensory clothing.
No tag, no buttons. Right. And she's not even connected to autism. No dot, no kid on this spectrum. She was asking me, I've talked with her several times. She was asking me on a board helper. I go, I need to focus on this big stuff. First the big rocks, then I'll get to the little rocks. Right now I gotta get these things set up. And I'm in conversations with several biomed companies right now to really focus on therapeutics and diagnostics that are new.
Yes, they have data behind them, they have research from reputable sources, but they need more research to bring something to market.
So that's what I'm doing.
[00:30:02] Speaker A: Yeah, it's. There's. They. Like you said, the hope that we can provide is also tangled with the experience that we have had individually with the children that we have been given. And I think sometimes it's hard to divorce those two in a way that we can help as many as we can. And at the same time, I fully believe that when we get really quiet about what our own strengths are as mothers and fathers and caregivers, it begins with that. Then the experience and then the thing that you can give back. I always love the phrase, you know, how do you help the world? It's help people, help produce ideas and then help produce things. Right. So it's that it's always in that order for me because I think that it in being the mother of Millie and Mac, people in their humanity matter, matter number one.
[00:30:54] Speaker B: Yeah. You know, I say it a little differently, but I approach everything from a top down, bottom up approach.
Right. So I am getting involved with some advocacy work which is where I live.
I would. I just came back from Washington D.C. at something called the Disability Innovation Forum.
I'll be doing more of that, I hope.
I'm getting ready to go to Nashville next weekend, October 10, to speak on a panel with something called Neurotech Frontiers.
[00:31:28] Speaker A: Wow. Love that.
[00:31:29] Speaker B: Which is an event put on by the Frist side Center for Autism and Innovation at Vanderbilt. And we may do. My lab is like going to do an MOU or agreement with Frisk and maybe get a half a dozen other universities involved and then work with like right now I'm working with a bunch of UCSD students because ucsd artificial intelligence students to help automate everything I'm talking about. So how could we help these startups with AI?
Because these, one man, one woman shows, even the big ones, even some pharmaceutical companies that I'm talking with and other biomed biotech companies, they have not jumped into AI as much as they should. I'm not an expert, but I know we're expert where we keep experts. So going to UCSD and overwhelmed with 40 different students in, including a severely autistic one who is non verbal, needs his dad and a keypad to communicate. He's a student there, he's going to be involved in our lab. So we are hoping that we can corral these people into a community and then some of them I may invest in personally. Otherwise they will become clients of our lab and you know, who knows where it's going to go, you know.
[00:32:54] Speaker A: Do you see the future of AI and tech intersecting with the ability for employment for children like ours?
[00:33:01] Speaker B: Yeah, yeah, the AI. I mean I look at it this way. Look, whatever is difficult for neurotypical people is more difficult for autistic people. And then obviously if you keep adding the layers, it's more difficult. So what can AI and eventually robotics by the way, even this Tesla, Optimus, whatever sounds silly, sounds like a joke. Ha ha. But and maybe, I mean, I mean.
[00:33:32] Speaker A: You and I have a caregiver, right? You know I, I always think about this. You have to suspend your own reality. If you're a typical human in the investing side and the tech world. If you are sitting around and listening to a father and mother like you and I, we're not saying that that's a hundred percent going to happen. But we know when we have this mysterious part of us going. Well, maybe.
Why, why wouldn't I? And I don't actually don't think it's hope. I think it's just, it just always holds on to the what if or the possibility that that could actually fractal into something.
And I will never not, I will never not disregard points of friction of where others say that will never happen. Well, we don't know.
[00:34:17] Speaker B: Yeah, no, it's happening. It goes back to scaling.
So right now you already have various robots being tested all over Europe and China. When will it be just like those movies IROBOT or whatever. When will it be a robot in every house? As a caretaker or someone that could help the elderly, dementia patients, severely autistic. As someone that literally just, I mean, just look at. Make sure my son doesn't run out the door.
[00:34:45] Speaker A: Exactly. You know, I mean having, having a three bolted front door, back door, side door, windows that are, I mean it's again, I'm so thankful that I live in the time that I live in to create safe spaces yet at the same time to alleviate the stressors of. That is one of the things I keep saying is like that would be a life luxury, you know that, that, that sits right next to unconditional love for me is unconditional safety for my kids.
[00:35:11] Speaker B: Yeah. Well, this is the difference, I mean between level one, two and three, you know, between, you know, again, the reason I got into it was life, safety issues. You know, sometimes his IEP team starts talking to me about communication or this or potty training, whatever. I go at home. I'm just trying to keep him alive, you know, and safe and hygiene and food. Beyond that I can't. I don't have the bandwidth to do anything more.
[00:35:40] Speaker A: Right.
[00:35:41] Speaker B: So we need help. Yes, it would, I would like to have caregivers, but even if money was no object, who could I rely on?
[00:35:47] Speaker A: Yeah.
[00:35:48] Speaker B: Who could always be there, not call in sick, not have a temper tantrum, not have their own family issues.
[00:35:56] Speaker A: Yeah, exactly. I actually, I was working with a, a public relations firm helping them redo the recruiting marketing for RBT's and local ABA centers here in New Jersey. And I was speaking to the public relations manager on this account and he said I'm realizing that the retention rate and blah blah, blah. And I said we have to completely shift our expectations of what that looks like for those people that are applying for those jobs. And, and I was throwing at them different angles and he said you're basically saying you want to take someone who knows chaos so deep in their bones that the chaos of being a paraprofessional one on one aid for your child is like a no brainer. And I said yeah, give me the, give me the middle child of a family of 10.
They will be the best RBT. They'll be the best. I don't want, I don't want the like girl that decided to go to special ed who vacations on the Jersey Shore. Like unfortunately I don't like that's. I can, I. That's not chaotic enough for her reality to transplant into what true chaos is at times.
[00:37:06] Speaker B: And so.
[00:37:07] Speaker A: I know what you mean. It's. Yeah. Even if there Was money to be had. It's it, it, it's a level of, well, what energy am I willing to put into the search for something that I don't know if it's out there.
[00:37:18] Speaker B: Yeah, it's a, that's why in fact there was. I've come across several autism startups related to caregiving, finding caregivers.
Some, some hybrid of care dot com.
[00:37:29] Speaker A: Yes.
[00:37:30] Speaker B: That. Like that.
[00:37:33] Speaker A: Training, monitoring the best, the best caregivers on the fly. When I travel, I, I travel a good bit with the kids is in college towns because college towns tend to have a lot of master's level behaviorists looking for part time work and let me tell you, more than I find in my bedroom community of New York City isn't that interesting. I'm sure at, you know, near Vanderbilt, you're going to find a lot more part time caregivers looking just to understand autistic children and young adults, isn't it?
[00:38:02] Speaker B: You know what some people are doing is hiring au pair.
[00:38:07] Speaker A: Yeah.
Foreign student for a number of years and.
[00:38:12] Speaker B: Right.
[00:38:12] Speaker A: We aged out. I'll be honest. We, we sort of aged out.
[00:38:15] Speaker B: Yeah. Those don't last. To be honest. In, in our severe case, you know, I cannot rely on grandma or grandpa.
[00:38:23] Speaker A: No.
[00:38:24] Speaker B: I'd be more worried about them, you know.
[00:38:27] Speaker A: You know, if, I mean, I'll trust you to come.
I would, I would.
[00:38:33] Speaker B: Yeah.
[00:38:33] Speaker A: Parents, if you tell me right now you're like, I'm in dire straits, can you get out to San Diego? I'd be like, I mean, honestly, come.
[00:38:39] Speaker B: On to San Diego.
[00:38:40] Speaker A: You probably would trust me more than you would trust someone that was a caregiver.
[00:38:45] Speaker B: It's funny. Yeah. As a matter of fact, as a matter of fact, you know, grandparents and a lot of family, you know, have a certain, I mean, of course they love their grandkids, but there's a certain distance there.
[00:38:57] Speaker A: Absolutely.
[00:38:58] Speaker B: And on top of that, like I said, I would be worried about my very strong, very muscular, very powerful teenage son pushing, you know, a grandparent down the stairs by accident.
I could not. And then, you know, there are things that only unfortunately, you know, this, everyone knows this. You know, dads become the wrestlers in chief in a severe case. Right. As soon as they outgrow mom and they're 6 foot 2, 220.
Right. If they're severe and they're knocking walls in and they're maybe potentially God forbid, hurting other siblings, you know, that kid needs to go in a home. Sorry. I mean that's just, it's a terrible, it's A terrible decision, terrible position to be in. I've talked to parents, older parents that I, who've made that terrible choice and because their kid was just too severe, that in one case, I think they had to be medicated for extended period of time. Many, many families that I met in my ecosystem, sometimes they would have to call the police. There's a code, I Forget what, it's 505 or something, some kind of a local code that they take. Something happens, the police come, they take your kid for three days of observation and. Right, right, right. But even that has its own risk because think, I mean, the few police interactions I've had with what my son ran off could not have been better.
Hats off to San Diego Police Department. I mean, they literally, on one occasion when he ran off, I had to, I was like literally three minutes away from the point that he ran off. The police surrounded him. They didn't try to arrest them or didn't try to yell at him or, you know, what's standing in your hand? You know, they just kind of contained the situation and they were in communication with me because I was on 911 and they knew they were coming and you know, which is always the case. Right. If a special needs loved one elopes or runs away, the caregiver or the parent is literally seconds minutes behind them.
[00:41:05] Speaker A: Right, Exactly. Yes. It's not. Yeah.
[00:41:08] Speaker B: It's not like my son like moved away and I didn't realize for three days. No. I'm like, literally, because we're always on. We're like firemen and firewoman. Right. We're always on. I have that. I don't have a pole from the second story to the, to the fire, but that's what it feels like. That's what it feels like. My ear, my OB is always on.
[00:41:29] Speaker A: I always say like the hyper vigilance that is demanded of me. My son is more of the eloper versus my daughter. And I do think, I always try to in some ways think of it. What it's helped me is that I'm more present in other ways in my life without them while I'm working or advocating because they've made me so hyper vigilant that I sense things so much quicker.
[00:41:55] Speaker B: Your life changes when you have kids, but when you have special needs kids, and especially if they're, they're severe or profoundly autistic, you, you just really don't either sleep well anymore or you're, you got constantly. If there's too quiet, you get, you get worried, you get nervous. Why is it quiet? Like, we go, we have get togethers and if I don't hear or see my son, let me go to a few minutes, I go check on him. Right. It's not like I can sit around and relax, finish a glass of wine. No.
[00:42:23] Speaker A: And again, we have to, I always say we have to laugh about some of this because unless. Unless you can just go, yeah. I mean, I haven't had sat down for a full meal and gosh, I don't even know when the last time that was.
But you know what?
Again, this podcast has always been for the authentic and truth behind the actual lives of the parents and caregivers living this. And I just wanted to say thank you for what you have done, because what you're saying to me and what you've shared is that finding the innovators and those that are developing things to actually provide care and hope, tangible relief in some capacity, that that is your superpower. And I. And it's wonderful to connect on that. And I'll make sure to put all of your information in the episode summary when this goes live because I think that we need to know that people like you are out there. I sit, you know, my kids are 8 and 10 and so I sit sort of on that cusp of like not newly diagnosed, but not nearly off the cliff. And I think that we need more reminders that men and mothers, women, fathers are all out there doing work, like you said, in the vein of which they can help.
[00:43:31] Speaker B: Last thing I'll say is one of my favorite quotes from probably a football dad to a son. You know, what would you do today if you knew you could not fail?
And when you look at innovation in the way that you want to have, the impact you want to have in the life you want to have, what would you do today as a parent if you knew you could not fail? And I feel like, and there's, I'm not alone. There's other people on this planet doing very much, thank God, doing. Cause I would not want to be alone in this. But. And I am lucky to keep coming across many different folks and we immediately begin to think about how do we collaborate? Because the other saying that I live by is a rising tide lifts all boats. So if you do good in your innovation and in your project and you're. It helps me. If I do good, it helps you.
So it's that camaraderie and collaboration, not only at that bond that I share with parents around the world, but that innovation, collaboration that supplements that bond. And now we're doing something for our kids. And my hope is that however small the idea is, if it's transformational enough, if you join our ecosystem, I'll make sure you don't fail, because I'll get it into our system and I'll lift everybody. You know, hopefully our tide will lift everybody's boat up and we'll get through this together.
[00:44:51] Speaker A: Well, I'm so glad to have you in my ecosystem now and to know that if there's anything that we can ever do to continue to uplift, those tides do rise higher the more conscious we are about those choices. So, Shari, I thank you for who you are and being you and what you're offering to this wild and crazy journey of parenting.
[00:45:10] Speaker B: Thank you, my friend. Thank you.
[00:45:12] Speaker A: All right. Thank you. And until next time on the Inchtones podcast.
