Imagine stepping into the world of a special education teacher who navigates the same trials and triumphs at home with her own autistic son as she does with her students. Meet Darcy Lippman, a remarkable mother and educator who joins me, Tony Mantor, to unravel the rich tapestry of her experiences with her son. Through Darcy's eyes, we traverse the early days of Jiren's life, confronting developmental delays with a cocktail of love, patience, and early interventions. Our heartfelt conversation pulls back the curtain on the daily resilience required in parenting and educating a child with autism, offering a treasure map of strategies and support systems for fellow travelers on this path.
Darcy doesn't just share her journey; she gifts us with the wisdom of her dual perspective, shedding light on how professional expertise in the classroom intersects with the emotional realities of home. Our discourse ventures into the intricate dance of "masking" and societal perceptions that often leave autistic children and their needs in the shadows. This episode is an invitation for you to grab a front-row seat as we navigate the landscape of autism education, from the disparities in services for verbal autistic children to the enlightening experiences of sitting on both sides of the special education table.
In the powerful narrative of Darcy's life, we also celebrate the extraordinary role of alternative therapies, like the magic of horse therapy, in fostering communication and emotional regulation for children like Jiren. As we wrap up our discussion, we touch upon the critical role of community support, the balance needed in parenting, and the confidence to embrace your own unique path. This episode isn't just a conversation; it's a beacon of hope and affirmation for anyone who loves a child with a disability, emphasizing that while the journey may be challenging, it's also replete with moments of profound joy and growth. Join us as we share stories, strategies, and the unspoken bond that connects us all in the realm of autism.
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)
Imagine stepping into the world of a special education teacher who navigates the same trials and triumphs at home with her own autistic son as she does with her students. Meet Darcy Lippman, a remarkable mother and educator who joins me, Tony Mantor, to unravel the rich tapestry of her experiences with her son. Through Darcy's eyes, we traverse the early days of Jiren's life, confronting developmental delays with a cocktail of love, patience, and early interventions. Our heartfelt conversation pulls back the curtain on the daily resilience required in parenting and educating a child with autism, offering a treasure map of strategies and support systems for fellow travelers on this path.
Darcy doesn't just share her journey; she gifts us with the wisdom of her dual perspective, shedding light on how professional expertise in the classroom intersects with the emotional realities of home. Our discourse ventures into the intricate dance of "masking" and societal perceptions that often leave autistic children and their needs in the shadows. This episode is an invitation for you to grab a front-row seat as we navigate the landscape of autism education, from the disparities in services for verbal autistic children to the enlightening experiences of sitting on both sides of the special education table.
In the powerful narrative of Darcy's life, we also celebrate the extraordinary role of alternative therapies, like the magic of horse therapy, in fostering communication and emotional regulation for children like Jiren. As we wrap up our discussion, we touch upon the critical role of community support, the balance needed in parenting, and the confidence to embrace your own unique path. This episode isn't just a conversation; it's a beacon of hope and affirmation for anyone who loves a child with a disability, emphasizing that while the journey may be challenging, it's also replete with moments of profound joy and growth. Join us as we share stories, strategies, and the unspoken bond that connects us all in the realm of autism.
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)
Speaker 1:
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 you laugh, some will make you cry. We're the 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 Music. Hi, I'm Tony Mantor. Welcome to why Not Me the World. Today's guest is Darcy Lipman. She's a special ed teacher, has four children, one which is autistic, and the stories that she has are just outstanding. Thanks for coming on. I really appreciate it.
Speaker 2:
Well, thank you for inviting me.
Speaker 1:
It's my pleasure. So let's start this off with how many kids you have.
Speaker 2:
I have four kids. Very interesting story.
Speaker 1:
Okay, and I think you said one is autistic, correct?
Speaker 2:
I have one who's autistic diagnosed. One is spectromy. We actually adopted three kids and had a surprise all within the same year. Like literally went from zero to four kids in about six months.
Speaker 1:
Wow.
Speaker 2:
All in diapers. So the story, you know it's a pretty cool story.
Speaker 1:
Okay.
Speaker 2:
Our oldest three are adopted through foster care. In our sibling group. We have had Jiren since he was born. The other two we were doing respite for and then when they found out the mom was hiding the pregnancy because she knew that he would be taken. Okay, and when they found that out she was seven months along, so no prenatal care. She was, you know, 90 pounds.
Speaker 1:
Okay.
Speaker 2:
So when Jiren was born, it was decided that we would foster him full time, because the foster mom and my other, my oldest two, who was a saint and angel and everything we got them on the weekend. She was a single mom and she had another son and that was Jiren, and Jiren's my kid was autism. She was born in the like state hospital, like the one that basically if you go to, if you don't have any. They were like, yep, we had to have escorts take us in and I mean it was. But he came home absolutely like, and he's supposed to be full term, but six, barely six pounds.
Speaker 1:
Wow.
Speaker 2:
He might have been right under when we brought him home. There's no way he should have come home.
Speaker 1:
Right.
Speaker 2:
My surprise, my, my biological child, who actually was born six months later after we spent lots of money trying to have him. He came for free, so he's he's, then Jiren's like Irish twin for his whole life, but he was in the NICU for a month and Jiren came home smaller than he was when he came home from the NICU.
Speaker 1:
Wow.
Speaker 2:
And he was a borderline failure to thrive. I mean we had to do weigh-ins, like every week he had to be on. I mean he was, he was sensory wise, just he couldn't noises, sounds. But you don't know if some of that is it due to some of the birth things, because he, you know birth trauma and adoption is always trauma to be taken. You know from your mom that your body's you know conditioned to need and but also I mean she was smoking a little pack a day and we don't know how much drug use was happening because she had no monitoring up till then. But he wasn't born with any drugs in a system, but he was.
Speaker 2:
He didn't get to be over 10 pounds till about five months old and so he was delayed in all of his milestones. You know the daycare teachers tell you like it's okay. It's okay, some babies just develop. You know it's okay. Like don't panic if he's not eating. Like textures were weird, it took a long time to get him to eat anything, it was different. But so our pediatrician is who was like our, our saving grace, okay, because at the six month appointment he's like he's not doing any of the things and not rolling over he's, you know and we're like I know, but the daycare teacher said, just because you know he was borderline failure to thrive, and you know he, that it's okay. Some kids are just late bloomers. We were lucky because you have to have a kid seen within 72 hours when they're placed with you.
Speaker 1:
Okay.
Speaker 2:
Through foster care. You have to have him seen, and he was the only doctor that had an appointment anywhere.
Speaker 1:
So then what happened?
Speaker 2:
So he was like I'm not comfortable with this, but I'm going to go ahead and I'm going to let you go. He was we're going to chicken at nine months If I don't see significant changes. I think we need to do a referral to first steps and I'm like, okay, fine. And at the time I'm here, I am brand new mom of four kids.
Speaker 1:
Right.
Speaker 2:
I had just had my youngest, who was a preemie. It was so stressful and I just wanted to believe he'll be okay, it'll be fine.
Speaker 1:
Sure.
Speaker 2:
Nine months came and he's like this is not okay, I don't care what your daycare person says, he should be turning over, he should be doing all these milestones. He's like I'm referring to first steps, I want to have them in the value. So we ended up finding getting OT services and special therapy where he had to be taught how to crawl. I remember him learning how to jump was the most hilarious thing, because you don't think you have to teach a kid how to jump.
Speaker 2:
But it was funny because Jackson, who was six months younger than him, always thought the therapists were there for him too. So Jaren had a built-in peer model for everything. So Jackson would be showing Jaren, because he would be doing stuff in the cave and it was just learning to crawl and just people not realizing, you know, like that's a process, and so initially they were thinking he might have dyspraxia, because also there was no language coming out. So we did really good. We had therapists coming in our home through first steps, which is like here in Missouri, if kids are identified with heavy specialties it also. What sucks, though, is a lot of people don't have access to these services or they have to pay a certain amount of money. But because he was foster care, adoption, he had Medicaid.
Speaker 1:
Well, at least that was some help.
Speaker 2:
And this is a barrier for so many parents because we have been able to navigate the system. Then people think, oh, you make that much money, you should be able to afford them. Like you have no idea how much these therapies cost, Absolutely so.
Speaker 1:
what did that allow you to do for him?
Speaker 2:
So he did. He started OT. We had started having speech therapists started so he was getting like OT, pt speech and in about 18 months they had suggested like you know we want to it's earliest we can do an autism eval because they weren't seeing things progress in normal ways and kids like the patterns were different. So he was making progress but not in a pattern that was typical for how kids make make progress and he did get some language between about one and 18 months.
Speaker 1:
Did that help him a lot.
Speaker 2:
He was able to say like 10 or 12 words and then they all went away, just like suddenly.
Speaker 1:
Wow.
Speaker 2:
And again, we didn't know any difference. Sure, he was our first baby. We believed everyone else I and you know we were given like two days notice he was coming with us. I didn't have time to, you know, read all the books and do all that, wow. So I thought we were actually thinking he might get sensory processing disorder, might be what came out, because he just was so sensory sensitive. I mean, it would rotate really dramatic things, like he'd go from one day loving to be in the bath and playing with water and then, literally, like the next day, it became like water was poison and it was like you're scarring him, and that would go for six to eight months and then, just randomly, he'd go three or four months with thinking water was great and you would never know what's going to happen that next day. And that was constant with his sensory things.
Speaker 1:
So how did you handle it from there?
Speaker 2:
What was nice about he was able to be diagnosed early, which 18 months is usually the earliest, and people are like, wow, you're lucky to get it that young, because we were able to get a ton of early intervention, which is such a key thing when working with autism. And I will say too, like I'm a teacher, I'm a special education teacher. I have taught kids with autism, I teach kids with behavior disorders. A lot of my kids have autism and so, you know, going into this, I'm like I'm gonna be like totally great parents.
Speaker 1:
And how did that work out?
Speaker 2:
You know nothing what you know in the classroom, like I try to tell my parents now that get hard on themselves. And I was like, do you realize that I come here every day with your kids and I am celebrated for what I do and I am good at it and I do this? I go home and we have home therapists who tell me and suggest the things that I do naturally every day at school and I'm like, oh, I mean just the stuff that I'm. I said it's your mom brain is so different. It's like the DBT talks about wise mind and your feelings mind and you know once your own child there's that. So I always just try to stress you're not. I have a master's in behavior disorder and special ed and I struggle every night, every single night. You're gonna do it.
Speaker 1:
Well, people don't understand that. It's really easy to look at someone work with them for a couple of hours, whatever the timeframe may be, but with your job as a parent, it's a 24 hour, seven day a week job. Not that it's a job, but it's a continual thing where you have to be there for the highs and the lows and everything else in between. Some people just don't get that.
Speaker 2:
Autism is a particularly hard disability because, for the most parts, an invisible disability.
Speaker 1:
Yes.
Speaker 2:
There's not. You know, when you're looking at a Kinoic Down syndrome or if there's some you know significant handicaps, the empathy is there. I hate when there's like severe autism and mild autism. I'm like every level of autism has its own struggles and balances.
Speaker 1:
Right.
Speaker 2:
Jaren. We thought was going to be more severe. Now it's like level one, level two. I can't keep up with all of that. But he actually he is higher functioning. The hard part about him is he first off looks like. If you're like I can't see the autism, I'm like think that that's a compliment.
Speaker 1:
Unfortunately, there's a lot of people out there that do not understand that.
Speaker 2:
That's not. Please don't say that to your parents, because you know what. I don't care if he looks like he has autism.
Speaker 1:
Absolutely.
Speaker 2:
We've come a long way to having to really embrace that that that's part of who he is.
Speaker 1:
Sure.
Speaker 2:
That's part of his essence. I don't want him to not have autism or not show his autism or not, because part of the autism is, I mean, he's the most. He's hilarious and he is. And right now he's like Napoleon Dynamite, full out, wears moon boots. I mean he wore, he wore, he wore a tuxedo school for every way to Titanic. So he was wearing a captain's suit.
Speaker 2:
I mean he, he does the teenage things. He's got his brother, he's got a brother in the same grade. He's got two, two siblings. You know they're teenagers, they're all going to be in high school together next year, but he's a mess. He's got the curly hair and I mean it's just that I like his, I love when I'm with him by myself, because his brain, just when it's allowed to be, and I'm not having to like put on my I need I get over anxious about like no, I want you to be safe and I want you to just like.
Speaker 2:
Right now he's over at the neighbors, but he was over there at eight o'clock this morning too because he was wanting to see if they were ready to play and having him understand that boundary, you know, and that stuff. Like he goes to therapy. Every week he has community therapy twice a week still, I mean. So I almost think sometimes I, when a kid does have more severe autism, people are more likely to to have some empathy. But what's hard with a kid like Jiren who doesn't look like? I mean, he looks like Napoleon Dynamite, but that doesn't scream much.
Speaker 1:
Right.
Speaker 2:
But I mean they look at him like you should be normal, You're speaking normal.
Speaker 1:
Right.
Speaker 2:
You're, you are going to school on the button. You know you do all this stuff typically.
Speaker 1:
Right.
Speaker 2:
But when you see him, so I feel like I have to fight all the time. And when, even when our friends say, like you wouldn't know, I said just hang out a minute, the autism will be here soon, don't worry, it doesn't, it doesn't. Just. You know, I say kids mask, they, they, they mask, they mask. They've learned to mask.
Speaker 1:
Right, exactly.
Speaker 2:
It does bother me because I'm also like you don't know how hard this kid has worked.
Speaker 1:
Sure.
Speaker 2:
I mean he was started first of that 10 months, but I mean he has been an intensive therapy his whole life.
Speaker 1:
Right, how old is he now?
Speaker 2:
He's 14. He's turned 14. And he knows everything.
Speaker 1:
Everything that you just said has been told to me at one time or another. I had a friend that told me about two individuals. One was autistic, the other autistic with Down syndrome. It was easier for him to get the money for the one with the autistic with Down syndrome than the one with autism, because they couldn't see it.
Speaker 2:
Oh, and in schools, as a special ed teacher, I'll tell you that kids with obvious disabilities the kid, the teachers are, and I'm coming from both sides. I am a special education teacher. I've done this for over 20 years Criminality with kids without behavior disorders. I had done ABA before when I was first teaching, you know just to like I had done all this stuff, I thought I knew it all to see what the expectations are for a teacher. Right now we're having an issue with there's a kindergartner who's struggling in regular ed because he doesn't qualify for self-contained. But he's naughty. But part of the naughty is that we're trying to make him fit into like teaching behaviors in a way that we would teach kids whose brains work, you know, neurotypical, like you have to teach behavior expectations in a different way.
Speaker 1:
Right.
Speaker 2:
The kids in their classroom that you know are sweet and have a disability, or you know if they're. You know if a kid is crying, but he has, and I keep going back down to the room not meaning it's just one of the more in schools more obvious disabilities.
Speaker 1:
Sure.
Speaker 2:
That does not bother them. But you have a kid with autism who can't can't communicate the right words, so then they learn a lot of kids in schools learn to say you know, shut up, you have one thing. Stimming is hand flapping and stuff.
Speaker 1:
Yeah, everybody seems to have their own perception of what they think autism is, even though they're probably wrong.
Speaker 2:
They don't believe the autism because they want to see autism as no. Kids with autism are sweet and you know they're and they're kind and they're adorable. But it's such a spectrum and I'm like, by the time kids are school age, if they've been struggling this whole time and then you shove them into a kindergarten classroom where there's 400 million directions a day. You're supposed to sit still all day. You haven't adapted your teaching to how their brain is functioning and I feel like I've had to learn along the way. I know I've become a better teacher since I've become Jaren's mom.
Speaker 1:
That's what I was going to ask you. You've told the story of how your son has evolved. Now how have you evolved since you started learning from the other side of the fence?
Speaker 2:
Well, I constantly, as a teacher, want to like go back and punch myself, my early teacher, in this face. For that you need to sign those reading logs. I don't understand what I'm like. Someone in my 20s should have just been like lady, you don't know what you're talking about Like, I mean, just being a parent changed me.
Speaker 2:
But being a parent of Jaren and I always Jaren has probably been he's been my passion because he was such a teeny, tiny little guy and he just now you wouldn't know he's like four inches taller than me. He's got a deep voice. It's funny. But he was always this itty, bitty, bitty guy and it was my job to fight for him, and so I had to learn so much, even though I was a special education teacher. There were so many things I didn't know about what I could ask for or what services could be available. And, again, because he was higher functioning and he wasn't, he was speaking. That's hard part. If an autistic kid is verbal, they are not given the same and there's no. Well, they don't seem autistic and like Jaren is verbal as heck. But his language, I'm telling you, he is not processing what you're saying or what, and you see it when you have conversations and he's like, you're like oh my gosh, that's right.
Speaker 2:
Well, well, well, let's go back and rethink that. But they see, you're verbal, you're fine, you're okay. But I had to learn. I had to finally sit on the other side of the table with all of the special ed people on the other side, you know, when they bring the big team, because you're a mom that knows data and I'm thinking I know all this stuff and I'm good at dad, I'm good at pulling his thing, I'm good at doing this.
Speaker 1:
Sure.
Speaker 2:
And it's hard. What about these parents that just got the diagnosis at four or five or six?
Speaker 1:
Absolutely. It's really tough when they first find out.
Speaker 2:
I remember his preschool one of his, the first going from first steps where we had all up until three.
Speaker 2:
You get first steps and now we had all the therapists come to our house and it was brilliant because when you having to take a kid to a center, like you learn this stuff there, but when they do it in your home and you're present and you're seeing how they do these things in your home, that was powerful. So I always I know people when I talk to new parents and they're like, ah, you know, our house is a mess sometimes and blah, blah, blah, and I'm like, oh please, I have four kids. Yeah, it's always a mess. Right, I learned so much by having the lessons taught. I was able to see how the therapist taught him and his environment and then I was able to mimic that and learn from that. I wouldn't have been able to do that sitting in a center. So I'm always like you have an option for home services. I would do that every time I do the same thing as a teacher. Now I ask if, like OT or PT, I'm like can you do it in the classroom? Can you come in my room? And I'm in a self-contained room so I only have seven kids. But I'm like if you came in then I could make sure as a teacher I'm mimicking you and I'm doing this so they're not just getting it the two half hours a week. You know, I could do stuff every day to mirror this and that directly, because before I'd be like, oh no, you know, take them, take them. But now it's like I see how important it is. Just see that.
Speaker 2:
But being like in his first preschool evaluation and after he'd had such intensive first step services for you know, over two and a half years, the whole team was there and they went from. I remember one of the things was they were going to give him 30 minutes of speech once a week. I had to have his first steps speech there and I was like, but he gets two hours of speech once a week, you know, twice. He gets an hour twice a week. Right now, and that was the only time we finally saw progress in his language was when it went from one hour to two hours. I said because of his anxiety and how like he was very much a scared of the world kid. So it's hit.
Speaker 2:
Every situation took him like he had to get his toe wet and he edited it so it and they're like, and I said, okay, so does that mean like you pick him up? And he has 30 minutes from time to pick him up? And they're like, yeah, you know, he walked out and I said, but he's, he's showing, he's in the less than one percentile for speech and language. Why wouldn't you put most emphasis on that? Right, because you're telling me that's his primary, like right now, that's what's holding him back, but you're going to give him half an hour once a week and this isn't a special education preschool. So we thought we fought for that and, thank goodness, my the speech therapists were there, because I wasn't smart enough to know all of the. You know, that's a whole other specialty, and so what schools do, unfortunately, is they talk down to the parents, they talk over the parents, they make sure that the parents feel like we know best, we're the smartest, we know everything.
Speaker 1:
Right.
Speaker 2:
I became. My biggest passion now is I make sure that parents when I, when I get a kiddo by the time I get a kiddo they have gone through the gamut because it's really hard to get into my program I'm always like I will be point blank, transparent with you every time and I said and I don't care if I get I'm always laughing like I have tenure, nobody wants my job, so but I do. I tell a parents. I'm like I can't ask for this, but you can.
Speaker 1:
Right.
Speaker 2:
Here's some things you are entitled to, but that, unless you go to this, I make sure that they always know. If you are wanting, thinking something, I will help you fight for it, because I'm not going to judge your want as something that is is needed and I I think for the first time, parents feel like okay, finally, someone is not talking to us like we're dumb, and I think that sometimes having a child with similar disabilities helps parents to also be like okay, I'm not going to get judged.
Speaker 1:
Sure, that's a big deal. No one wants to feel inadequate, especially when they're trying to learn and help their children.
Speaker 2:
Hey, in Lippinland we were whatever you want, you just show up. You know it's like they don't. They don't have to worry about all those little things. They had nothing to do with the child learning and you know being safe and feeling, because if kids don't feel safe, they can't learn. In kids with autism, I think it's even more because we don't know how to communicate safe.
Speaker 1:
Right.
Speaker 2:
It doesn't matter how amazing we are, we have to. Every kid is so different and it's not the same way you communicate safe to neurotypical kids.
Speaker 1:
Sure.
Speaker 2:
You have to take the time, and that's where I love my job as self-contained, because I get the kids all day and I can get them over multiple years.
Speaker 1:
I think that's great. Now you had mentioned something else that just came up that helped him a lot. Can you expand on that?
Speaker 2:
Um, something that's been really cool it's come up in the last year is Jared had started out having a home therapy, like through his autism funding again luckily because he is Medicaid Um, so we were able to qualify for like the maximum amount of, you know, state autism funding. So he's got to do horse therapy, started with horse therapy in first grade. He does that once a week. We drive about 45 minutes away. He does it for an hour and we drive 45 minutes back.
Speaker 1:
So what does horse therapy entail? Can you give a little bit more information about that?
Speaker 2:
Well it's it started off. It was really unique for each child that participates and there's usually class about three, four, five kids.
Speaker 1:
Okay.
Speaker 2:
Jiren's what the initial thing that was so great is. First, jiren loves animals, has always loved animals, that's been his thing. But at the time when Jiren started he was so his body was not in control, he was not perceiving how his impact was on others. And that's a hard cut. We don't think of that as being hard, but if she's with autism like that's a struggle thing to do, right, they can't identify with what you're feeling, because Jiren has a hard time understanding how he impacts others or his actions impact others. Um, he's always done good with the animals. We had a grayhound that Jiren was attached to Jiren from the time we brought him home and Jiren, for speech for a year sat and stared at the speech therapist who had come every week and they worked through music. Jiren's very into music, so she would start, she would do songs with him that's how she would start and so he would not say a word, would not make a sound, and then as soon as she left, he would go and sing all the songs to the dog.
Speaker 1:
Oh, that's so great.
Speaker 2:
Yeah, it was, and she was such a saint it was. It's hard because we have a new dog now and our new dog has his own issues and Jiren just can't understand, you know, because Danica was so loving, Right. But the great thing about the horse is it's such a big being and Cooper was the. They set him up with the littlest horse because he was this teeny, tiny, tiny little guy and he got up there and Jiren was scared of the world, like scared of everything, but not scared to be on a horse. It was weird.
Speaker 1:
Wow.
Speaker 2:
Because they have to go to a test thing. They, the therapist, the horse therapist, leader, whatever was able to talk to me, because Cooper would be naughty on the horse and we've been honoring him, kind of like trying to bite the leader or just.
Speaker 1:
Oh yeah, that can be a horse yeah.
Speaker 2:
And but he understood. This is why I'm like we have to have people in our lives that are experts that aren't us, because as a parent, I can know all these things but I don't. There are other people who are better teachers of my child. I actually didn't have my 13 year old help, jiren, with a, my virtual homework the other day because I was losing my mind and as a 13 year old he was able to be like, and part of it is they're virtual twins. I mean, they hate each other enough the time, but I mean.
Speaker 2:
But she was able to explain to him like Cooper's anxious, cooper's worried, his tummy feels weird because he feels your body is not strong and is not calm. And so do you want Cooper? Cooper's getting in trouble? Right now he's being told no, no, no, no, and that you know and and do you want Cooper to be told no? And Jiren was like no, oh, my gosh, they don't want Cooper to be in trouble and that was just. She was so good at getting him in tune with just if my body is okay, cooper's body is okay and we work together. That was incredible. There was no amount of therapy, I mean when, and that happened so quickly in and he, just he could articulate that.
Speaker 1:
Now Cooper's the horse right.
Speaker 2:
Yeah, cooper's the horse.
Speaker 1:
Okay, now how big a horse is he?
Speaker 2:
Cooper was a normal size horse, but on the very small side. Now he rides one of the biggest horses.
Speaker 1:
That's great. How long has he been riding for?
Speaker 2:
He has been riding since first grade. When he came in Initially it was just they have horse leaders, they have sidewalkers, and so Jiren loved that because he was like whoa, this is awesome. And by that time he had started talking like a fiend.
Speaker 1:
Okay.
Speaker 2:
And I wanted to talk to anybody about everything and he had an audience there that just would let. So it was that was therapeutic for him to just be like I can. No one's telling me to be quiet, I can. I can tell everyone about every Titanic thing that they need to know.
Speaker 1:
Well, that's good that he can be around people that don't judge him and he can just say pretty much anything that he wants to say.
Speaker 2:
Jiren, just Because we do a big talk in our family. We have a daughter that has severe mental illness from her trauma and one thing we always are is we're very transparent. I always I tell the kids we don't lie, okay, we don't tell, we don't keep secrets. And I think, especially for somewhat like Jaren has such high anxiety and OCD things about if he doesn't do certain things a family will die and stuff. So he doesn't understand that he shouldn't tell all the horse leaders about his puberty, he shouldn't tell them all about it and and.
Speaker 2:
But he does and I, I love that there are places where he's not that I cannot have to overthink like oh my God, what is he saying? Oh my gosh, what are they interpreting it right? But no, as he got older he became, he's so connected. Now he rides off lead, he trots, he's in horse shows. People ask like gosh, that's a hour and a half long trip every week and I said it is literally one of the most, because Jaren's body becomes different when he sits on that horse.
Speaker 1:
Well, that's the great thing about all those programs out there.
Speaker 2:
I have to inform a lot of these parents about the autism funding out there and I was lucky that we had connections at first steps. We had amazing therapists and they're the ones like, oh yeah, go apply for this, go do that. But I'm still finding out stuff. So I tell them I'm like these are the options, like there's. Like he goes to Camp Barnabas now, which is this great camp in Missouri. It's a sleepaway camp that you go for like a week and they have all different kinds of disabilities and there's different weeks, different. You know they have different disabilities. He's gone on weeks with chronic illness. He's gone on weeks where you know it was kids who were blind and her, and he goes every year, at least once a year. And he became a different child when he spent a week in his element.
Speaker 1:
That's so good.
Speaker 2:
He had. They have like what's called a your missionary. You have a one-on-one like college kid who's with you, you're with just. Everybody is unique and everybody is doing things differently, and I he came back a different child after that week.
Speaker 1:
That's really good to hear. It's always great to be able to take them to a place that they can just forget about everything and focus on having a good time. Now you did mention something that's pretty big in the autistic world and that's puberty. It affects so many different teens in so many different ways. Can you expand on that just a little bit?
Speaker 2:
When, when Jarvis Vachengre had gone to some panels about puberty and autism and that could be its own podcast, you got parents because no one could have prepared us for what comes with puberty and autism, because you put all those hormones, so you got all the emotional things and all. And then you're trying to like, thank God he has an amazing therapist that he's had, you know, since he was little and he's, you know, we've had, we've brought services back into our home because we are at the point of exhaustion with when I'm able to step away and I'm able to like not be in the mix of all of it. I I have so much. I'm just like, how the hell does Jarvis deal with the fact that he has to interpret every freaking situation?
Speaker 1:
Yeah, it's a tough thing because kids just are so overwhelmed in the neurotypical world and then you add autism to it and it just adds that much more to it. So by your ability to take him to that horse therapy, it seems like it helped out tremendously.
Speaker 2:
That that's. That's been a huge part of like I'm telling you. Horse therapy was the start where all the moms and I would just like you can say things you wouldn't say to normal people and you can admit that you're really frustrated about something which you wouldn't want to make, and we all had different levels of things we were dealing with, but we had one common string. I remember once Jarvis fell off a horse and I felt horrible because I didn't see it happen, because I was like we were doing our, our mom, we were just checking in. Sometimes it's talking about plans.
Speaker 1:
That was great, that you got to connect with other moms and just go over things when you first moved there. How was it? How did you adapt? How did you grow? Did things fall in place fairly easily?
Speaker 2:
At the time we were new to Kansas City. We were very isolated. We joined a church. We didn't join them, we just started going. We're Christian, they're Methodist, but they were really great. That was a huge thing because they just embraced every kid for who they were, they had. It was an amazing church. That probably saved us in those early, early years. It didn't matter what was going on People. They met Jiren or was that and part of the reason elementary was so good, as Jiren grew up with those kids through church in there and, you know, got with elementary together and they were at church stuff together and then they went to middle school together and so elementary was pretty good for him because he had a group of and he had his group of odd duck friends where the moms and I all became. They were all in social group together and literally the oddest. Like I loved them. The moms and I all became friends. We did play dates with each other, finding those parents. That was huge.
Speaker 1:
That's great. So it sounds like you've got things pretty much under control now. How does that compare to when you first started?
Speaker 2:
I was paralyzed with parenting for a while because I was like I'm going to mess him up, I'm going to do something wrong, I'm going to make something worse, and I had to look at like, what can I do? What, what is important in our lives? But again, that is because I've had good therapists and good people.
Speaker 1:
So now that you've got pretty much everything under control and the people have helped you and you've learned, is there anything else that's on your mind for the future?
Speaker 2:
What parents like me need who now have like kids. So I know all about the beginning stuff, like the starting out, but I'm desperate for information from parents of teenagers, the transition piece. I'm trying to seek out every parent I know who has like a high schooler, because Jared don't be going to high school next year. I want, please, please, tell me what I'm in for.
Speaker 1:
Well, hopefully there's going to be some parents that's gone through what you're about to go through and can reach out and give you a lot of information. That's the great thing about this community they help each other out and it's just just an awesome thing to do With. That said, this has been a great conversation. Do you have anything that you'd like to leave us with?
Speaker 2:
It's hard because I want to say go find another parent. I would caution them to not jump on every autism Facebook page or group. Some of them are very judgmental. Do your own research a little bit too. If you feel a group is attacking, you're not the bad guy, you are the parent. You still know your child best. Your child is still everything that you thought they were. It's just they're cooler now. Like now you get to change how you think and like your brain is opened up.
Speaker 2:
There are parents I see that are beaten up. They get a later diagnosis. Don't put your kid in a. You're torturing them. You're you know, don't do this. Or you're telling them, or if you want them to do anything, that's typical, then that's and I'm just like it is hard enough to be a parent first that gets the diagnosis because you go. It's okay to mourn it. I tell parents like it's okay if you're not happy about this. It's okay if you are sad and depressed and you feel like something has ended. It's okay that that's a normal process that all autism parents go through and don't let anybody think you should be like oh, you know, you'll get there. You'll get there when you find other parents.
Speaker 2:
I would say not try to do too much at one time. A lot of like. That's something that some parents will be given, like here's, here's a hundred percent, here's all these things you can do and here's all this. Contact these people and they're still trying to cope with the fact that I just got my kid identified. I would recommend parents get their own counselors and therapists, because this is a journey and your paradigms have to switch so much. And if you aren't taking care of your own struggles and your own stress and it's not because something's wrong or you have a mental illness, it's just raising a child with a disability in a world that is not made for them. You are always on. You don't ever get to not be off. So that's the number one thing I would.
Speaker 2:
I mean that would be right up there. It's like go get support for you and your spouse. It's okay if you don't do everything. It's okay One thing and decide like okay, we're going to do this one thing, you can decide. People don't have to like the decisions you make. You're still the parent and you can do this and you are capable and you just sometimes your brain has to open up in different ways that maybe it hasn't been challenged before, but I've never met a notchism parent who hasn't taken on that challenge. I mean, that hasn't gotten to that place. You'll get there, but don't try to do 700 things at once.
Speaker 1:
That's really great information. I've really enjoyed this conversation and again, thanks for coming on.
Speaker 2:
Yeah, it was fun talking about it.
Speaker 1:
Yes, for sure I had a great time. Thanks again, it's been a great time. 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 TonyMantorcom 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.