Tony Mantor: Why Not Me ? - Beth Tignor: Navigating the Journey: Raising a Child with Autism and Celebrating Their Unique Talents

Episode Date: July 12, 2023

Send us a text Raising a child with autism can feel like traversing uncharted territory, but Beth Tignor's enlightening story proves that with early intervention and the right support, incredible progress is possible. Join us as we discuss Beth's journey with her son, Anthony, who was diagnosed with autism at a young age. Beth shares the challenges of coming to terms with his diagnosis and how she sought help from various sources, such as the school system, to ensure the best possible outcome for her child. In our conversation, we also explore the unique dynamics of raising a child with autism within a large family. Beth shares her experiences explaining Anthony's condition to her other children and the importance of giving equal attention to all her kids. We discuss how Anthony's passion for technology has been a tremendous asset in his learning journey, and how he has even found exceptional talent in video editing. Beth's story is a beacon of hope and inspiration for other parents facing similar challenges. By allowing children with autism to express their failures and joys and to follow their own unique paths, we can create a better world for individuals with autism and their families. Listen in to this remarkable episode to learn from Beth's incredible journey and celebrate the progress that can be achieved with love, support, and determination. https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me The World Podcast, hosted by Tony Mantor. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make your laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. hopefully you gain more awareness, acceptance, and a better understanding for autism around the world. Hi, I'm Tony Mantor, and welcome to Why Not Me the World. It is said that one in seven people worldwide, either know someone or have someone that is autistic in their family.

Joining us today to tell us how this statement fits her is Beth Tignor. Thanks for coming on, Beth. How are you doing today? I'm doing well. How about yourself? Doing great here. Thanks for coming on our show today. Oh, my pleasure. I think you told me that you have a son, Anthony, is that correct? Anthony is my son. He's 14 years old just the other day, turned 14. So it seems like time's flying by. And it's my experience with raising a child and I'm going through the diagnosing the, well, I would say even maybe the science.

and symptoms that we saw early on or that I saw early on, but and knew as someone who's been in around the population before, I knew these symbols, these signs and saw what was happening, but I had to come to terms with it myself as a parent. Because I think that is the one thing that although like you, I saw all the scientific information I could possibly want on the topic, quite frankly,

probably more than I ever needed to know. Yeah, on having, knowledge of the scientific information can only help us so far because when it actually starts affecting our lives and in this case your life, it can be very dramatic. So between the scientific information that you knew and what the doctors were giving you, did you get enough information that helped you? What it didn't tell me was how to deal with the reality of I have a one and a half for a two-year-old who is not meeting his milestones, and I now have to come to terms with the idea

that there might be something wrong and seek help for him, which I think is a barrier for some parents to begin with. I think that there is an emotional response that goes along with this, that we may, you know, that you, as a parent, you need to be ready to hear. I distinctly remember conversations with the folks that were, the media,

to sit down after all the testing was done with the professionals. And when they said that they were going to diagnose him on the autism spectrum, there was some in my group that were very dismissive, that were very, oh, this is not right. It's just he's a child. You're not taking it. You're taking things out of context and blah, blah, blah. And I finally at some point had to say to them, listen, again, 15 years ago, I said, listen, we have to realize that autism is not just Dustin Hoffman and Ringman.

We can't look for these. It can't be something that you have set in your mind that is the condition because we just don't have the time. For Anthony's sake, we don't have any more time to waste getting him the help that he needed early on. So what was some of the symptoms that you saw that he was displaying that made you realize that you needed to do? something to get some help for him. He was completely nonverbal. And so that was probably one of our first symbols, signs that something was off. At nearly two years old, he had an uttered a word.

So we're talking about 12 years ago when autism wasn't easily diagnosed as it is today because the doctors just didn't know as much back then about it. So what was your first move and how did you approach it to, from that standpoint. It was, well, I'll tell you, here's something that's helpful. It may not have been known, maybe more known today than it was when I was looking for help for an understanding of what was happening was we did look to the doctors first. But unfortunately, there's a limited number of child neurologists, which is who would

normally diagnose child that age. What I didn't know, but I found out from a close family friend, was that I could also approach the school system. Wow, that's a great thought. I don't think I would have ever thought of the school system first. So when you did approach them, what was the response and how did they help you in what you was going through at the time? So my local school system is actually, at the time we were living in Norfolk, Virginia. I contacted the local superintendent's office and said I think that my child is having some developmental milestone issues and I'd like an assessment. And they put together the team because the Americans with Disabilities Act forces the schools to be on the front line of that.

And so while it would have taken me months to get him into a neurologist, they were able to see us relatively soon. Within two weeks, we were in school. And all of the same testing that needed to be done was done. It was just coordinated through the school district rather than through a doctor's office and one singular. visit. They at that point took him and had him evaluated by occupational therapists, speech therapists, psychologists, they just, they basically did whatever testing they needed to do during that time frame and developed what would ultimately be his first IEP, which is an educational, individualized educational programming. And you'll hear that a lot as you talk to parents.

that is the school's program that they lay out for advancement for your child and how the goals they want to work on based on those individual child's means and what they come to the table with. So with all this is going on, you're having to handle this as a parent and it's not the easiest thing to go through because you have to be concerned about your son and all the things the doctors are saying So how did you handle that? I would say that diagnosing him as a parent meant, I'm going to say something that maybe a little bit unusual, but it was hard to accept that maybe my child was different. And it was hard to accept that maybe I had, you know, as a baby, you are only, you're solely

responsible for everything with them. And so you can't but help but to take some personal responsibility, did something I do during pregnancy happen. You know, how did all of this happen? We're searching for that answer. And it was only when I gave up on searching for that answer for myself that I said, it doesn't matter. It's all gone. There's not, you know, there's scientists out there in the world that are trying to figure out what makes this happen. What I need to focus in on is Anthony and making sure that Anthony gets the best possible.

help as early as possible. And that was, so it was once I could get that, get past that point of selfishness almost in wanting my own answers, that I could redirect myself and focus on the fact that I was running, not running out of time, but I do feel a little like. It's always running against the clock of getting him the best possible help at the right developmental time and being able to support him in that. So, once you got through all that, and how long did it take you to get through that?

Was that like a year, six months? How long did it take you to fully, you know, grasp that, okay, this isn't my fault. I've got to take and now plan for my son's future. How long did it take you to get through those emotions? I would say it was a good six months to a year before I could get to that mental state of mind. And now I'll just remind you that pops up every once in a while, still pops up and I'll see something and, you know, there'll be an article of, oh, there's this connection with autism and I read the article and it's perhaps, you know, taking some sort of medication during pregnancy that we all thought was, was okay at the time to take, but maybe it has some effects. Those moments of seeing those types of things as a parent still makes me kind of reflect in and say, you know, I hope that I didn't do this or did something that I couldn't have helped. But at the same time now, I will tell you,

as he's 14 years old, he is such a unique person, and I've learned to appreciate all of his uniqueness, that it's, I don't, we don't see him as that different anymore. He's just as unique as a person as any individual will be. So he's 14 years old, and I was speaking with a friend of mine, and he's autistic, very highly functional, and he told me something that really resonated with me. and that was during his formative years. He got bullied a little bit, and he said that he felt really alone. Now, has your son ever had anything like that happen? I would have to say he's blessed to have not.

But I think maybe in school, but not that I'm aware of. And I will say that because kids tend to be kids, and it doesn't matter where they are, seven and eight-year-olds like to pick on each other. I'm a little more old school when it comes to the bullying thing and then I see that's a little bit more of a natural. I'll tell you, here's a story I got about that. And it might have been that my son was being the quote unquote bully, but he was 10. He was 10 years old and his teacher called me and said, Anthony's having a hard time respecting the boundaries of one of the other students that he's normally really engaging with and really likes to.

parallel play with. And I said, well, what do you mean? She said, well, he knows that the other student gets upset when somebody claps really loud next to him. So Anthony will go up to him and kind of giggle a little bit and clap next to him and then giggle. And I said, well, what do normal 10-year-olds do when they want to annoy each other? And normal being the operative word there, what do other 10-year-olds do? They go and they annoy each other. So in my eyes, he was not bullying a child by any means. He was playing with him as he's played with other neurotypical children because we did have the blessing of having, I have a big family. So there was lots of kids around for him to play with in his own way and get used to being around a lot of children. That is not the case for a lot of children on the spectrum.

A lot of times through self-preservation or for whatever reason, they're isolated. and we just we didn't we I was adamant that he was going to be part of everything as much as he wanted to be and so when he would go to my sister's house he would go out to the neighborhood and she lived there in an apartment complex that would always have children other children from the complex at the play yard and the children ironically were they are so easy to accept they would ask questions like when you speak to Anthony sometimes he doesn't answer you directly he'll answer you directly he'll answer you. answer you with a phrase that he's learned from somewhere because frankly that's how he taught himself at his talk. By listening to other phrases and he's echolic where he'll repeat things that he's heard in the same tenor and tone, which is hilarious sometimes. But I said, you know, that's how he engages with the kids at the apartment complex. They tease each other. That's what kids do. And so, see once we got into that part of the conversation the teacher fully agreed with the fact that

it was never done in a malicious manner it was but it was unfortunately we had to tell Anthony that it was we had to get him to understand that that particular type of joking or playing was actually hurtful and once he understood it was hurtful he stopped completely he's got such a kind soul he would never intentionally hurt somebody if he thinks he has he's very apologetic but um i would say that a lot of in these formative years, which goes along with what your other friend had said, was making their environment as natural as possible, as organic as possible, because that's the world they're going to live in when they grow up.

And they need to be just as comfortable with the world as the world with them. I would say the acceptance part, you know, when they're out in public, I have seen folks like in the grocery store that will, you know, they'll look at us a little bit differently, but he's so outgoing that if they were to say something to him, he would engage, and that would be, but happily. And so this is not the case for some parents, and I understand that, but this is his, his situation, and we're grateful for that. The one thing that you brought up was you've got a large family.

So I was talking with one couple, and they had, I think it was two or three children, and one of them was autistic. And they had to explain to all, to their other kids, you know, why their brother was different than they, they are. Did you run into some of those same issues with all your family having to explain and, or did they kind of just accept it and just go with the flow as some do? I would say my nieces and nephews were very easy to go with the flow on things. I do also have a daughter who is six years older than Anthony. She just turned 20. And I would say she had to, it was harder for her.

And as well, so there's four of us in our family with, like I said, lots of nieces and nephews. But I would say she had a lot to deal with herself. And we had to pay attention to the fact that we as parents and as family members were so surrounding Anthony and trying to support him. that she almost was being left out a little bit. That's understandable. So that is something that other parents need to be aware of, and other couples need to be aware. There is a high divorce rate in the community of caregivers

because we naturally focus on the weakest in our group as humans. Yeah, and that's perfectly normal. But we need to remember that there is still other people in our lives that need our attention. And so that is something to keep to be mindful. Yeah. And I mean, I fully, you know, that's the first time I've heard that, you know, kind of like that. So, so that's really good for other people to hear because because they may be going through similar situations and not knowing how to handle it. You know, and they're looking at their son or daughter that needs the help, needs more help than the other one.

And they're thinking that their other child should be supportive of that, but they're not really fully. grasping that that everybody needs, you know, as much equal attention as they can because they're their kids. Yes. And if you don't, I mean, it's like I said, it's, it's inevitable that extra attention will be given. Be cognizant of it. If you're aware of it from the beginning and you're, you can approach the topic as opposed to saying, you know, you should just be supportive, approach it together and say, I understand that a lot of my time is going to be focused on this. and I want you on board, but I'll also be conscious to make time for just you as well. As children, because, you know, children, we don't want, as parents, we never want our children

to think that we have a favorite. Right. Inevitably, if you're a parent raising a child on the spectrum, then you are having to give more of your time and effort to one child than the other. So does, so he's just turned 14. Does he have anything that stands out to you that, that he might wind? end up doing or might consume a lot of his time? Well, I will tell you, he is going to end up doing something along the lines of probably

your trade. Okay. And I tell you this because he, about two years ago, I was working on a project. He's always, always been attached to his tablet to his iPad for many years now. And I have worked with the schools to try and get them to understand that he early on, learn to use this device to teach himself. And that's the best way he learns. He would go and look up items by speaking.

He'd learned that if you press the microphone button, he could tell it something. But he also learned that if he couldn't understand something he was reading, that if he highlighted it, Siri would read it to him. And so this has been his connection to doing things. That's great. I love hearing things like that because this just shows people that are listening that, anything's possible and just not to give up to keep on moving towards what you'd like to do. Well, so this story that I'll tell you, it makes me think that he'll end up somewhere in your businesses. I had been working on a project and, you know, with all companies, they give you

an email address. When I stopped working with the company, I hadn't realized that Google was still logged into my email address in the old company. They contact me about seven months after the contract is over and they said, hey, listen, we're getting ready to take everything down. Please go on and get anything you might need from the platform. You know, okay, thank you. And then one of the tech support persons calls me about an hour later and says, I don't know how to give you the information from your YouTube channel, but I feel like there's so many thousands of views on here that I can't just disable it.

What do you want to do? And I said, I don't have a YouTube channel. I don't know what you're talking about. Well, it comes to find out. Anthony had made him. himself a YouTube channel through that email address and had been posting videos of now for him the videos are other things he sees on YouTube that are the cartoon characters a lot of the credits the curriculum boards for a lot of the children's shows he would record those and

repost them and I had no idea he literally had on one on one video and I have no idea why But he had 43,000 hits. That's a lot of, that's a lot of hits for a kid. It sure is. So after we found it out, I went and took his tablet away from it. I took his tablet and was looking through some of the things. And he has taught himself to use two different editing programs, software editing or video editing programs with the Record It Now.

And then there's another one that's a K-I-N-E-T-C, I think, is what it's called. It's a different type of editing. So he downloads videos or records videos and edits them all himself. And again, he taught himself how to do all of this right under my nose, and I had no idea. That's great. So when I told him, I talked to his teaching staff, a support staff, as we came time to redo his educational goals. And now he's going into high school and they're looking to formulate what he'll do. do for a living and try to prepare him for that. And they had, they had mentioned that he said he

wanted to be a farmer one day. Wow. Which is kind of an off item. And I was like, well, so here he may not be actually giving you an accurate description of what he can do. So let's be a little more realistic and let's try to gear him towards actually exploring how to make a living off of a talent that he actually, that he's taught himself and that he apparently loves to do. So we're working towards that as a goal for him. That's awesome. So over the years, how have you seen his changes develop? I mean, you've got a daughter that you saw grow up and changes that happen that way.

But now you're dealing with Anthony's autism and the 10 or 12 years that you've had to deal with that and understand it and grow and learn the changes. Have you seen anything that you can? tell our listeners that you've used or that he can use that can develop him for his future? I think that the changes that come along with with children on the spectrum as they're going through their formative years, you almost have to act as a very off-hand guide for what I had to and to let them express what it is that's going to be important to them. Like everyone else, we choose our careers based on what we're, what we like, what we're good at, and what we enjoy.

At least as teenagers, we were all told that. And then we hopefully made that our reality. With the child on the spectrum, there's so much angst to try to get them into the right spot or back into the right lane as we see it, that we forget that they're the ones that are driving the car. We're just trying to make sure they don't run off the road. Sure. And we have to let them, we have to be willing to let them try different things

and let them be free to express failures as much as joys. And what I've seen in him is definitely his willingness to be more open with people, to be more interactive as he's built more confidence in himself. Because when he's doing that, when he's doing the things that he likes like if he's recording he likes the idea that it's how he's interacting with people and it's given him

the confidence as he's grown to just try different things some things didn't work out some things that's good because so many so many that I've heard tend to you know if things don't go right they kind of take and go into their shell

you know and and that's their comfort zone so it sounds to me like he's willing to go outside that comfort zone a little bit to learn things and grow. He is, although I will say you just, as every parent, you know when your child is getting

to the point of frustration and just like every other child and every other person, he has he just hasn't always, he's still learning to withhold some of the outbursts that would come naturally. He does have,

he will have a triggering item that'll if he gets upset with something, he'll start repeating a mantra to himself that is comfortable for him but fits nothing into the context. Or he has a pointer stick that he likes to manipulate with his hands. And that'll give him a little bit of this, you know, the focus on something to regain himself and to re-control himself as he's in a tantrum. Those are much less common. But again, what they call stemming for some of our children, there's a lot of advice out there to break them of that habit.

I say you teach them how to use that in an appropriate way, like his stemming being the flicking and the pen, because it is actually their way of collecting themselves and calming down. Okay, that makes sense. Exactly. We all need to be able to do that. And you're just teaching them what's an acceptable way to do that as they're out in the real world and around others.

The beauty of this is everyone is different in this world. I mean, it's like, like the one thing that I, that I tell people when I'm, when I'm being interviewed about, about my podcast is that, is that I'm hoping to show the differences within people, you know, within the autistic spectrum. But, but, but they have to realize that that just because they're different doesn't mean that that they're, they're not able to, you know, fit into society because there are different people in society that sometimes you scratch your head and wonder how they got there, you know, but, but, so the one thing that, you're, you know, so the one thing that. that I'm curious of is I've heard so many people tell me that their autistic child has a focus that's unlike any other that they've met because because they can ask them a given date on a given time, you know, even if they weren't alive, they know what happened that date. Is your son similar to that way or is that doesn't interest him? So his talent, as I would say, or selective savantness, which is actually,

something that they've done studies on. It used to be believed that the savant figures like we saw in rain men or there's actually a young man out of DC who is blind and has been on the spectrum. I want to say maybe in his 30s now, absolutely phenomenal classical pianist, but can't make himself a peanut butter and jelly sandwich. So those are, they call them selective savant skills. And that was kind of what I was. I was alluding to earlier when I was saying, you have to let your child's inner talent come out. You have to be willing to let that happen. I would say Anthony, his talent is with things that he has seen videos. If I asked him to take me to any select scene in any video that he's ever watched, he can get right there within a moment's notice.

If you pull up the video, he knows exactly on the trail will it is, exactly where to go. And so he does have that memorization ability. And that's what I think it is. It's a little bit of being able to memorize very quickly. It's not that he sees it and then he never forgets. It's that he's able to memorize it quickly. And he's okay with the repetitive action that would take for you to memorize something. Okay.

So moving forward, I can just imagine that you're pretty excited to see how he's going to develop and how he's going to use his skills and how. and how he'll be able to use that to transition into the workforce and society. I am excited to see this. I'm excited to see how he will interact as he's getting older, how he'll interact more with his peers, and how much he'll learn to develop relationships with his peers versus just the support figures.

Okay, so he's 14 years old, and he's been developing, and he's learning and you're learning and you're interested to see how he's going to work with his peers moving forward. So I guess my question is, up until now, how has he worked with his peers and how has that camarader been?

I think that that is the one part that he still struggles with as most do is the socialization aspect of it. They can socialize with those. It's hard for them to initiate, for him to initiate socialization. So he's not exactly sure how to play along, you know, how to play along with somebody or how to interact with somebody on an age-appropriate level.

And that's where, that's where these next few years of high school are going to be focused in his puberty years or his teenage years, will be focused on turning to learn to interact with his peers appropriately as he's going to be out. Hopefully one day he'll be out on his own and learning, and interacting regularly without any support. And so gearing him towards that is the end goal and then just filling in support where he needs it.

We are blessed to have a few organizations here in Virginia that do minimal service oversight where the person is actually living in their own apartment and basically functions as their own person. And they have a staff member that will stop by once every several hours, maybe 10 hours, make sure that the person is safe, make sure that they have, you know, bought their groceries for the week or that they've, you know, taken medications that need to be taken. It's somebody that stops in and just kind of make sure that happens, but they are essentially

living their own lives. And I look forward to that being his end result, that, you know, there is no supportive service and a daily care taker needed. And I will say one of the other things that I'd like to make sure that your listeners know is there is a lot of services out there available to help you. But it's all very overwhelmed. Please be prepared to be overwhelmed in the beginning because there's so much now that you have to go through that you have to you have to just look for what niche fits what you're looking to do and where your child is. There's other services out there that are dependent, you know, that will give you full dependent care. Some of this stuff that you're entitled to.

It takes a long time to get through the minutia of working with state governments. But Anthony is allotted a 35-hour-a-week personal attendant. And states all see that as an alternative to institutionalizing. So they would much rather pay somebody to come to the house and help me out for 30 hours a week than worry about the possibility of needing to have him institutionalized. That's a good thing. that allows hopefully to to take and build towards the future rather than restrict because when you when you put someone in an institution i mean i'm not saying anything bad about all the institutions but but the thing is is not knowing what they are

whereas you know what what you can do at home if you have that help then hopefully that that help will will develop into something that can be a safe zone and they can build from that and then transition so that they can be productive and and and just feel good about their life. Absolutely. There's a there's a purpose for everyone in this world and we just you know even we just we're more focused on it when we know that the child needs a little extra help and that's what this is. All people develop you know it's you don't get to be 20 without having a life story behind you already. Absolutely.

Yeah. It's our daily actions and habits and surrounding that form us as people, just as much in neurodivergent versus neurotypical society. Sure. Yeah, that's exactly it. Everyone is unique, whether we, in one way or another, and it's just a matter of seeing how we all can fit into society together. Well, I really want to thank you for coming on and sharing your story with us today. I think we covered a lot of topics that hopefully will help a lot of people that are listening to this. And the bottom line is that we are all in this together worldwide.

The more we understand, the more that we have an opportunity of helping and making this a better world for everybody to live in. Thank you, Tony. I appreciate you letting me tell Anthony's story and good luck with the rest of the podcast. I'm sure you'll find lots of interesting stories. Thanks so much, and it was truly a pleasure to have you here. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to tonymentor.com.

Contact, then they can give us their information so one day they may be a guest on our show. One more thing we ask, tell everyone everywhere about why not me the world, the conversations we're having and the inspiration our guests give to everyone, everywhere that you are not alone in this world.