SUCCESSful Pauly - An Autism Success Story
CONNECT WITH S.U.C.C.E.S.S.
Season 2, Podcast Episode 206
This blog post is based on podcast episode titled "Successful Pauly" which can be found on Spotify, Apple and other podcast platforms, or here: https://www.thesuccessapproach.org/autism-podcast
LYNETTE: Welcome to Connect with Success with Dr. Lynette Scotese-Wojtila, where we help connect you with knowledge. Our mission is to lead you to a new and exciting way of understanding, responding to, and helping all those with autism. We hope to expand your thinking about how to best serve these amazing people and to support you in your daily struggles and celebrations.
RICH: Welcome to the next episode of Connect with Success, a podcast built around The S.U.C.C.E.S.S. Approach (sm) and the person who coined it, Dr. Lynette Scotese-Wojtila. We have a very special guest with us today who is here to give another witness of just how The S.U.C.C.E.S.S. Approach (sm) has impacted their life with their son. So looking forward to taking this journey with you and of course we have the wonderful doctor Lynette here with us today who's going to help us digest some of The S.U.C.C.E.S.S. Approach (sm) in all these given situations. Dr. Lynette, what's our concept going to be for this episode? LYNETTE: Today we are going to talk about relief. And when I think of the concept of relief, I think of it as a remedy for you know, prolonged exposure to pain or, or suffering or oppression. You know, one of the words that comes up a lot when we think about helping individuals with special needs, not unlike a migraine prolongs suffering and makes people uneasy and it's challenging to endure something like medication can make the migraine go away, and there is the relief. RICH: With us today is Samantha Hejduk and she's got her son Pauly, who is nine years old, and she's going to tell us a little bit about herself. SAMANTHA: Hi. So, my name is Samantha. Most call me Sam. I was previously a therapeutic behavioral specialist / case manager. I have Pauly who is nine years old who attends ITC and we also have Miss Bella, his little sister, who is two and a half going on 25. Who also is Pauly's boss, but as we talk later on, has also brought out a lot of skills in Pauly. They were meant for each other. Like, I feel like Pauly is here for her and Isabella is definitely here for him. But yeah, that's us. And now I currently am back working in the pharmacy during this lovely pandemic. RICH: It was interesting how that works out right? Because it's the same dynamic at our house. We've got Maddie and it's like Jared was meant to keep Maddie going. And then we have Finn. And then we have Ollie who was meant to keep Finn going. That's kind of fun the way that works. LYNETTE: God's got a great plan. We just go to follow it. RICH: So tell us a little bit more about Pauly. What's his diagnosis? How does it work for you? SAM: So Pauly… it was a little complicated in the beginning. So at nine months, Pauly got a severe cold, and it caused his adenoids and tonsils to swell up and expand and never come back down. So we noticed like he had trouble breathing when he was sleeping, nose constantly running. I was going to the doctors with him like, “Hey, he's not breathing when he's sleeping.” like we're waking up, me and his dad, did not sleep for two and a half years. His primary did amazing trying to like get us answers. We went to the ENT fighting for surgeries to get them removed. Finally at two and a half years old, they removed it. Prior to that we were in Help Me Grow, so we noticed he wasn't meeting the milestones he was supposed to be meeting. So he was in speech. Then we got into speech at Cleveland Clinic. I asked for a referral for OT because he was technically, they said, not behind in walking, but like just grasping and other like gross motor skills and things like that. He was behind them. They didn't want to officially diagnose him with anything more at that time until after the surgery. At two and a half, he got his surgery and was completely different. He would finally sleep peacefully -- like it was relief. And they said basically from what they seen he had the largest adenoids ever removed from a child. From what I was told they had been floating around Case Western to be used. They asked if they could keep them on like, like to be shown in classes and stuff. So they removed them and they said basically from how large they were, and the amount of pressure that he had from them, it was probably like he was hearing underwater. So from age zero to then, that is the time your brain is like a sponge and you are picking up word sounds. So his was like hearing underwater. So also with the sleep apnea, it affects the front part of your brain. So that had time to recover. So they, at that time, also didn't want to diagnose. They wanted to see what happened with that. So we did multiple sleep studies. He was a trooper through all of it. He did well with them. That did recover. His sleep apnea technically went away. We continued speech and OT. He then started saying words and sounds, but again, wasn't at the milestones he was supposed to be at. So then we met with his neurologist and he agreed speech delay, developmental delay. He agreed autism, but we didn't like label him at that point because he was more on the ADHD. And that's what we're focusing on. The district going into preschool was more on getting that label, the autism label, which they tried labeling Pauly before we even saw a neurologist, which I thought was weird. Because, I didn't know school districts could label a child, like diagnose officially, and they can't, but… so we went back to the neurologist and he explained to me why the district was pushing the label and he said it's up to you. You know, some people don't like labels, and I'm not big on labels. I believe everyone's who they are. I feel like if you have a label … do you have to identify by that? Or you know, it's up to you. Eventually, we did get the autism diagnosis because it would help with the scholarship when we would come to ITC. But prior to that, the district labeled him as educational autism. But officially he was diagnosed with ADHD, anxiety, sensory processing disorder, and autism; that’s what's on there now. But he's doing great since coming to ITC. Prior to that, I wasn't pushing labels because like I said, I am not big on just slapping a label on it and moving forward. Like his neurologist had said at the time, nothing was changing. The label would not change his therapy, would not change him. It was up to me. And he said sometimes like when you put a label on him, it can you know, for future, prevent things from you know him doing things. And he called Pauly a special case because of his sleep apnea and things previously. He said, if it's not autism at that time (he was younger at this time), he said, and it's more from, say, he wasn't getting enough oxygen to the brain; or say, it was you know, just a delay and as he gets older and hormones kick in or whatever the case may be, and this changes then we have to unlabel him as you would say, and then prove okay, what this was a misdiagnose; but then as Pauly got older and I was like you know, at home, I am seeing more of this diagnosis, and I'm fine with it. And he said as long as like it was me and I wasn't being pushed by the district, still at this point, I'm like, no, they knew to back off at this point. LYNETTE: Yeah, so one of the things you mentioned in terms of the value of a diagnosis. Here in Ohio, one of the values to having a name or a diagnosis for a child at least educationally within the Ohio Department of Education system is that it is turn-key for the Ohio Department of Education scholarships. And there are different kinds of scholarships. So those of you who are listening outside of the country, for sure, know that some places in the United States and Ohio is one of them, there is a scholarship program where parents can understand that their child has a special need, get that established through an evaluation team report, and therefore an IEP -- or an individualized education plan, and take that education plan and have it implemented by people outside of their local district, who are what they call special scholarship providers for the John Peterson scholarships. And there are two on the first, John Peterson, who was a wonderful state rep, who 17 years ago I think it is created the autism scholarship because he himself as a state rep had a child, a daughter with autism. And he wanted parents to have options and so when the scholarship came around, it was first the autism scholarship. And then later there was one that he established called the John Peterson Special Needs scholarship. So all it really means is that families can take their child out of the local district and forgo their access to FAPE - free and appropriate public education - and choose instead of district resources, to take them to a private provider of the autism scholarship or the John Peterson scholarship. And at that point, the people working at those agencies render the IEP. And they still work with the district occasionally and specifically to doing new IPs and such, but the family and the agency tend to work together there; or doesn't have to be an agency. It could be a special provider. Not just an agency, but a speech therapist in one area and a PT in another area as long as they are individually providers. The families can go through them. So I just want to make that clear because not everybody is in Ohio. RICH: Right. And if you're in another state listening, call your local Department of Education and see what is available in your particular area, if anything, and if not, advocate in your state for something. LYNETTE: …a great model for that. It has its flaws, but it is helping lots and lots of kids to at least access something along the lines of specialized services. RICH: So Sam, tell us what you guys like to do for fun. SAM: When Pauly… well during the week he comes to the center [Integrations Treatment Center]. When he comes home, I let Pauly do what Pauly does. He comes to the center he gets a sensory diet. He does his school. When he comes home, that's his relief. That is his, you know, “I did my daily routine”. Kind of coming home, it’s just like his free time, I should say. He looks forward to coming into school as well, whether it's to use his tablet, going outside, whatever. So for fun, we are outside people during the summer. My parents live a couple doors down, so they have a huge pool. Pauly is a fish. Literally. Since he was, I think three months old, we had him in the pool. At two years old, we took him to Mexico. We put like a puddle jumper on him. And it was just like something to help support me in the water. No. He literally jumped in that pool. It was a huge resort pool. And he swam around the entire pool in that thing. For a week. I literally chased -- like he was known in that resort -- like everyone knew him -- and I was exhausted. Because that is what we did for a week. So he is a water child now, but he's a Pisces also, so he loves being outside. We like being outside. In the wintertime we tried to find different events. He went to the circus a couple times. Absolutely loved that. Disney on Ice. He loves playing in the snow. Pauly loves getting his hands, dirty snow. Whatever the case may be. I let Pauly explore as much as they can. I recently watched this video and someone had said let your kid live dangerously safely. And I'm like that makes sense. Pauly is literally my wild child to the point where sometimes he does give me a heart attack. But I let him do that to a sense, like I let him push those boundaries outside, like safely. In the sense where like he's exploring different textures or whatever the case may be, but he makes me nervous. I feel like when he's older, he's going to own like a skydiving company. I literally think this is going to happen and mom's going to have a heart attack. He went to the air show for the first time this year, in person. He and his dad went. It was like a thing that they had been planning. And they stayed for about an hour, but they had to leave because Pauly thought that it was his turn to skydive after he watched the skydivers. And he was really upset. His dad said he kept trying to get to them to get their parachute like it's my turn. And he’s like Pauly. No, it's, you can't do this. And trust and believe, if you gave Pauly a parachute, and he could go out there and skydive, that boy would have no fear and he would do it. So as when he turns 16, I told his dad that he can take him and start the process of like tandem jumping and things like that, because I really think Pauly will enjoy that. Lynette: A fun goal. Sam: Yeah, but his body, I think his sensory system responds well to that right? Because he does, when he gets that activity, and when he gets that sensory, he is calm afterwards when he comes home. LYNETTE: There's no mistake or there's no accident there as we learned in our sensory integration episode. One of the first ones we recorded. Such good content. RICH: Sensory is always one of my favorites to talk about. And just so you know, there's a place, I think it's in Hiram that does, like these low key skydiving adventures. Our friend Don Kendrick had talked about it with us. She actually did a whole thing. We'll have to get the name of it for you. But it's nice. It's an open field. So it's like it's considered safe because it's nice and open. Yeah, so we'll get that information and put it in the show notes. LYNETTE: Yes, we’ll put in our show notes and share with people who have that adventurous kind of spirit in their own child. RICH: That's not me. I'll watch. Yeah. We’ll come out and do a little play by play taping. I am not jumping from the plane. I’d be the one that defies gravity. SAM: I would probably do it for Pauly. Once I do that first time, I'd probably be okay. But I know his dad would volunteer before me so I let them do a father son thing. LYNETTE: Yes, yes. RICH: And what a great model as we get ready to jump into the message of the show, kind of a good metaphor, right, making sure that parachute is packed before we jump right. LYNETTE: Right! Love it, love it! SAM: Oh, he knows because for a swingset he has like a little parachute we bought him. So he practices jumping off that, and he makes sure it's on his back.
LYNETTE: Yeah, what a visual. So Sam, starting with our line of questions now. Is there anything about your child, being at ITC, that no one else knew or explained to you? SAM: Yeah, that he actually enjoys coming to school now. I will say in the beginning he loved preschool. Like when he first started, I would say school. He enjoyed it. He had amazing preschool teachers. They were, it was an older generation, who cared. But then right before we started looking and found ITC, I knew it was time to find something else because you would ask Pauly how your day was and it would be “Bad.” How was school? That you're coming out saying “It's bad” and you could see it on his face. It wasn't just like he was just saying things. I also figured like since him being at ITC. This is where we learned about the whole sensory diet. We heard of it in therapy, when we had them, and outside therapy. But it wasn't like fully explained. They would just say, “Oh sensory diet, sensory diet.” And when I first heard it, I'm like sensory diet? Like is this something he's supposed to eat? Right, because I can barely get him to eat whatever he's willing to eat. I let him eat. So if you want me to feed him sensory foods, it's not going to happen. But they didn't explain that with his sensory diet. It was going to be certain activities or things that need to be done throughout the day for his sensory system. And that we found out when we came to ITC, which I think overall has changed Pauly's entire life. Like jumping… where a lot of people would yell at kids for doing… Pauly needs that; that is part of his sensory diet. He has a trampoline in his bedroom. He has a swing that is on a playground at a park in our doorway of his bedroom -- like that is part of his sensory diet. So that is something we learned about Pauly because of ITC. Another thing I learned too is Pauly allows certain things to happen at ITC and not at home, such as mom is not allowed to brush Pauly. Till this day, we've tried over and over again. If mom brings the brush out, “No Mom, no brushing.” But he loves it here. Yeah. So that, even as Pauly gets older, like there are things, like and I respect that. Whoever brushes him here, they know what they're doing better than they do it a lot more than mom, but also maybe he's separating it like I showed that at school. Like, leave me alone while I'm home now. But he can't explain that to me. But he can't explain, “No brushing mom.” So that sensory diet brushing as part of it, but to him that is here. It's at ITC. So at home, you don't want brushing done fine. But he does have me roll his back with one of those rollers. He likes mom to do pressure, and since coming to ITC he's been here a few years, but he can communicate his needs right before; and that's one of the reasons I wanted the switches. He couldn't communicate his needs to me. And that scared me. And when we talked about relief, when he came to ITC, I had relief as soon as I walked in the door knew that he would be coming here. I felt secure and safe. Because even if at that point he still couldn't communicate, I knew that it was safe. But now he can communicate his needs and all that came about being here at ITC. But that's the main thing. We'll all of it at ITC is communication. The separation of some things mom I want here ITC some things I want at home. Respecting those boundaries. Have his understanding, like his needs and wants and the fact that he loves school, like he enjoys coming. He has his routine. When he leaves school, you ask, “Pauly How was school?” “Good.” “How was your day?” “Good.” He has not told me had a bad day. So that alone makes a huge difference for me and his dad. RICH: And so Lynette, how would you start to build that schema for Pauly then to have some of those skills transferred from ITC? Over the course of his day here? LYNETTE: One of the things I actually was thinking about is what a beautiful and advanced application of that transdisciplinary spirit where the OTs and the speech therapists and the parents and whoever else is on the team, they're all working together. So in Sam's witness of Pauly preferring certain things at home, and certain things at the center, and maybe not mixing them up, she's still found a way and Pauly still found a way of doing much of actually almost all of the sensory diet, except for that deep pressure touch brushing that she referred to as the brushing. And that's a beautiful thing. You don't have to do 100% of it. Doing some of it, and enough of it, is exactly right. So I actually wouldn't work to change that. I think if there's a skill that he's let's say reading here and not at home, which is not the case, or using a fork here and not at home, which is not the case. You know, those things we can look at expanding their schemas what they call that what we call that so that they have the understanding that a fork is a fork, it goes with food. So it's going to be at ITC and at home so one of the things mom did share is this whole idea of or what you didn't show you said the word brushing, but I thought you were going to say tooth brushing, because we weren't on that here. And that was a generalized so we had a little technique where you know, we worked on it we desensitized and we got to go in here at the center. We do a lot of ADLs, activities of daily living with the kids, and Pauly was up for toothbrushing and so as mom, but he kind of was falling into that I'm not going to do it at home because it's a dicey thing or a school thing. And so we talked about it, identified it, and we created a special program -- a reminder program -- for Pauly, where we would say to him when we did his teeth. This is number one, we brush teeth. Number one, this is first number two will be home with mom. And we said that in the moment at 9:30 or 10. Whenever his first ADL cell was, and then when he left, I put a sign on the door, and I told my staff because mom and I agree that was the last thing they were going to tell him before he opened that door to leave to go home with his nanny was “number two tooth brushing will happen at home with mom.” So it's like you set the stage early in the day, then you remind them in writing at the door as he leaves. So you could then at least hear the words and hopefully have it rendered then and be like yep, I was warned this is going to happen. It's time for number two. Okay, ma'am. Let's do the brushing of the teeth. So that's the kind of thing we would do, Rich, to expand care. RICH: That's right, sure that they're able to transfer that skill outside of the realm of EITC. LYNETTE: Yeah, and that's unique to each family. Some families are very comfortable with all of it and want more of it. Some want to do just part of it. So are uncomfortable doing the techniques because their bodily techniques, it feels strange to squeeze their kid or roll them in a mat or doing things like that. And then there's some parents are like, you know, I'm not gonna roll my map but my husband's really good at piggyback. So let's do that jumping around. And roughhousing is like great, that'll be his dose at home. RICH: Yeah. So Sam, what advice do you have for moms and dads of older kids that is different from the advice that you would give moms to younger kids? SAM: The first thing I would say is don't ever stop advocating. Always, always, always advocate for your child. Unfortunately, the world that we live in, was not built, or as of right now, is not made for our children and that's why I always preach acceptance and awareness. A lot of people that talk to me, I don't look at or speak on autism as so much as a negative thing. I look at as autism is saved for an example, a personality, and for an example, and there are symptoms that come with autism. And I look at is we need to treat those symptoms. And if we treat those symptoms, it's okay. A lot of people I feel like look at the autism as a negative thing. And it's not, and especially with the older adults. A lot of information on autism wasn’t out, right? So I feel like they have a disadvantage. Especially because they didn't get the early intervention. There are still programs, there are still therapies available. Unfortunately, after 21, a lot of places aren't paying insurance. School, you know, times out after 21 because, you know, you should be done with school by 21 because we say so. I don't know why “21” is the age, but you know, according to data or whatever they say 21 is the age needs to be done.
So my thing is is don't stop advocating. Autism is not a bad thing to me, but it is part of my child; it is not who my child is, but it will be with my child and carry through with him. But if we can help eliminate those symptoms, and you could do the same thing with your adult child, it can help them deal with this world we live in and maneuver it and you could do that same as an adult. So that is what I've told a couple of people who have adult children with autism who, unfortunately, they didn't get the speech. They didn't get OT. They didn't get the specialized schooling. Their child was thrown into a system that put them in a special ed program that had a special ed teacher, but they weren't specialized in autism. They didn't really know anything about autism. But they did the best they could, right. It was no one's fault. Like they just didn't have, you know, the training or the knowledge about it. But there are still programs out there that can help. The other thing is -- no matter who it is, we all continue to learn. Me, you your child, your mother, you can teach whoever's around your child, whether they're 15 or 25 different things like The S.U.C.C.E.S.S. Approach (sm). Not everyone may be able to take the course right now. But what you learned, you could say, you know, when you're trying to get Pauly to do this, try to say it this way to him, because this is the way we're doing it. And this is the way the Center does it. You can still do that as an adult. A lot of the things like I learned in that course, when I was working as a therapeutic behavioral specialist, I took over and realized I was doing in my interventions with my adult clients. Especially like the ready phase. And one of the big things is meeting a person where they're at, and especially the clientele I worked with was chronic homeless. They were chronically homeless and severe mentally ill. You have to meet them where they’re at. And to get them to do anything, they have to be ready. And one of the things in the model that is my favorite thing that is part of model is the ready phase. Even as an adult, you can still work on getting that person ready. So that would be the same advice that I have for adults -- is if you have a child with an adult who has autism or an older child, take the class. You can use it with them too. There's not an age gap. Take learning or take education, do research. You can still help them at this age. RICH: And if you don't if you can't make the class in person, remember that if you go to thesuccessapproach.org/online-course, you can take the online course for The S.U.C.C.E.S.S. Approach (sm). It's available to you. And the beautiful part of that is that it's a self-paced module style course, that you can take to learn everything about The S.U.C.C.E.S.S. Approach (sm). LYNETTE: So say in that witness of you taking the concepts of readiness, which were one of the early episodes on our podcast, and using them with your clients. It reminds me of these last couple moms that we've worked with, you guys all have a background in social work, you know, and that's putting yourself in that position to help people access services and help and even the direct counseling and support that you're trained to offer people. To give you a new trick at your veteran status as a person involved with mental health is it's life getting to me that you're able to apply it. And just like in SUCCESSful Josh episode with Stacey and SUCCESful Nathan episode with Darla humans, who are social workers, have such wonderful skill sets to be able to add to that with your population and to see gains because of something you learned through your family's need for service, through Pauly's need for service. It's just a sort of a exponentially wonderful opportunity to, you know, be the village. It takes a village for everybody who needs special needs or mental health help. And you found a new tool as a fellow villager. You know, that's great to hear. SAM: Yeah, I currently, I stepped away from that position. But now that I'm back in the pharmacy, like I also see myself using it with the clientele that comes in. Because from being in that field and coming back to pharmacy, I carry those skills over so I feel like any skills you gain, you're going to carry over into your next journey. And with this class that I took with the model that you learn through Lynette. You're not just going to use it with your child. You will literally use it with everyone you will use it with your husband. RICH: That keeps coming up… SAM: And it works. You get more done and you know things that you need done around the house teaches you to get them ready and prepare them for things on the inside. LYNETTE: Let me just say quickly that while that is, what The S.U.C.C.E.S.S. Approach (sm) does in the online class that now supports people to know this, it helps you understand yourself and others which naturally allows for better communication. That's what it's all about. SAM: And to trick your husband and… LYNETTE: Shh…that's the extra part of the course you took! RICH: Right. I'm here to tell all husbands I'm here for you. SAM: I don't know, it might trick your wife too! LYNETTE: Sam just kind of talked about advocacy, starting with awareness and education. So either we can build on that and maybe just reiterate it but what's the best way for a family to advocate for their child's needs? SAM: I'm just very passionate about autism and just people getting the resources and getting the help they need because I'm sorry, I don't think people should have to fight this hard, right? And the world we live in, like I said was built for. And I hate using this word like the “typical” situations, the “typical person” and it's unfair; but the main thing I would say is research, do all your research. Talk to other parents. Get their experiences. Get their views. See what they're saying. If it's not ITC, look at other schools that may be more in depth with autism, or if it's not autism, like a special needs program that may fit your child. The more knowledge you have is the more power you have when advocating for your child. Another thing that will help you in the end is: know the laws of your state, especially when it comes to advocating for your child when it comes to needing therapy. Your district, especially if you're in a public district, what services they have to provide because not everyone has, unfortunately, access to go outside of their district. I know like some areas like there's one school for a hundred miles, you know, and not every parent has the support to travel to another school. Like we have amazing support. Thank God for my parents and Eric's mom and our babysitter and things like that, because we're able to send Pauly to ITC with their support, but I know every parent doesn't have that.
So if you are going to stay within a district, make sure you know what laws and what they have to provide for your child with their IEP. There are different advocating, parent advocating groups on like Facebook -- join them. There are parents that will come to your IEP meetings with you. Make sure your child is getting all the services that they need. A lot of people don't know that, if you're in the district, or whatever, you can bring outside resources in to the school, if your school isn't providing what your child needs, and letting them know that you're there for your kid. And that you want to be involved in. You need to be involved. And make sure that they're involving you. And at the end of the day, go to bed knowing that you tried your best and even though, on our hardest days, we'll get through it… and then call Lynette. LYNETTE: Oh geez! [Laughter] I was just going to say mic drop on that mic. We're gonna get through it. That's exactly the notion. We're gonna get through it.
SAM: We will. RICH: What are some of the greatest challenges The S.U.C.C.E.S.S. Approach (sm) has helped your child overcome? I know you talked about a couple of things earlier, but like if we can just kind of hone in on the mainstays that have just given you your child back. SAM: The main thing, I think, is getting Pauly ready, which back again to the ready phase, getting Pauly ready for anything is key. And what the ready phase taught me was getting Pauly ready for something was the biggest challenge. Well, no, not getting Paul ready; getting Pauly to do something because Pauly is stubborn like his father. More like his mom. Well, maybe it’s kind of both.
But he will. He will do something when he is ready. If he is not ready, he probably will not do it. He is like a bull, he will not move. No. So I think coming to ITC and learning the model, and then them also having Lynette’s model, and you know, teaching us to get Pauly to that ready phase has became a big factor in his life because he has accomplished a lot more. So some things may take him a few weeks to get ready, for example, with his haircuts before, initially haircuts were not the best thing for Pauly. He hated them. But my mom would do them and at the house and she did great with it, but it got to a point where I said okay, Pauly, you're ready to go to a salon or a barber. So the girl who does my hair, I was like, I think you will be best. She's very calm. She worked with kids with special needs in the past. Carrie, an OT here, printed out pictures of the inside of the place. We talked at home. We prepared him for weeks. You're going for a haircut this day. So every day it was talked about. We got him ready. So when that time came he did great to this day. He does great. Janelle is his hair stylist… is his friend… he will say Janelle is my friend. Pauly two years ago, if someone was cutting his hair, that is not his friend. That was his enemy. No. Like you would ask, “Pauly Do you want a haircut?” No way. No, and he would flip out. But I think preparing him for that is what got him that. Now sometimes it takes him minutes to get ready. But it's all about getting him to that ready phase. Also, if he's not in that ready phase and you get him to do something, is he really taking it in? Is he is he absorbing whatever it is that you need him to do and actually learning from it? So like again, I know I talked about the ready phase a lot but I think that is the biggest challenge that has helped us overcome what Pauly is, because when we get him to that point now, he's actually accomplishing more in the long run. And it's a permanent accomplishment. LYNETTE: Yes, that's the word. SAM: Because the haircuts, he continues to go. Like with his sister, we prepared him: she was coming. And at school, they talked about a baby sister coming, and they read stories, and they had a baby doll here at home. We had a baby doll, and he would help feed her and then when she came in, he came up to the hospital. He was so happy like he jumped right in the bed with me and wanted to grab her. Pauly prior to that he would have been like okay, so baby who cares? But you saw the emotion and the excitement in him. And like now there's some days he probably wants to send her back to the house. But he actually is really good with her, like Pauly is very gentle with her. Pauly will go in another room. He shares his stuff. So all that, that entire time, got him ready for, I think, moments like this. LYNETTE: You keep saying that you're saying readiness so much, but we really can't emphasize it enough, Sam. And here's why. It is probably the thing most overlooked because it's the most easy to misunderstand. Most of us who live life day to day without the challenges that individuals on the spectrum face can become ready, and are ready more naturally, more often, and for longer times. So it's accessible to us -- our nervous system and our thinking centers, our brain -- are accessible to us. So we never want to underestimate the importance of readiness for them because we take it for granted. And so when you stop to say that somebody isn't ready, and you baby-step, like we did with some of the people you talked about in some of the resources, we strategically engineered him to understand, predict, and therefore be ready for that expectation; to get those sheers out and have a haircut; or to have a new baby come into his life; or to have the toothbrush enter his mouth at home versus just here. So it's about doing what's almost unusual or subconscious for us and really honoring that readiness. So it's a really good topic to review a lot. SAM: I think I also benefit from it a lot too. And I think that's why I like it so much because I also have ADHD. So I understand Pauly more on that level. And without knowing it I probably incorporate a lot into my life like planning and you know getting myself ready, like I have my own routine that I do every morning, and Pauly's involved in that routine and you know we come to school drop off, I go to work and get ourselves ready for you know, all that every day. So that's probably also why like, I'm like, This is my favorite part because it made my life easier. LYNETTE: Again, that exponential benefit. SAM: Yeah. So not only does it help with husbands… RICH: Well, I tell teachers all the time too, it helps with your class, you know if you have a strategy that helps them all focus, and then you can kind of look around and see if they're ready to receive. It makes that reception of the information that much easier. LYNETTE: Right. So, Sam, you've shared a lot about your experience on the receiving end of the class and some of your favorite theories and ideas; and we know that readiness phase and readiness idea is critical. But what other S.U.C.C.E.S.S. Approach methods or theories do you wish your child's preschool, kindergarten or elementary teachers would have known at the time they were serving your child SAM: Once again, their ready phase. Because I think, this is the thing, I think when kids are in school, and this is for all kids, not just kids with autism, that kids with just disabilities, and just all kids in general, they compare every child to either the, you know, standardized testing or you know, well they're supposed to be here, they're supposed to be there. Where, that's not how reality is. And each kid needs to be ready to go on to the next level of learning. And I think if they got each child to a ready phase, more children in general, would do better. And granted, there's 1000s of children so they can, you know, sit down with every kid, [and say] are you ready and you know, prepare. But if they took the approach, and especially with the children that are in the classes that may have three or six children, and they did that and focus on that from preschool and up and prepare them for these classes that they're in, I feel like in the long term, the ready phase would help them throughout their educational career, I should say. Also, when learning The S.U.C.C.E.S.S. [Approach] model, I never heard the words your child will not do this or cannot do this. It was when your child does this. When we get to this point. That is something that I never really heard. Well, no, I take that back. I heard it, but the last year before we came to ITC, I heard a lot of well, we don't know if Pauly will do this. Pauly can't do this. Pauly won't do this. And as a mom, and my dad raised me, don't use the word “can't,” especially with yourself. And when you're saying my child can't, make child won't, you're not psychic first of all, so you don't know what he's gonna do in the future. But it just bothers me. So you're already setting him up for failure in my mind, and you know, so what are you doing when I'm not here? If you're willingly saying he can't or will not do this in the future and it was over reading. And I had said Pauly has been reading probably since he was three, let me tell you because YouTube list on the left hand side all of his shows and they are not in order and he goes to the exact one he wants to channel like and read. No one could tell me different, like he is incredibly smart. He does not bring it out if he's not ready. Hello, “ready phase” but also if he is not comfortable, he wasn't comfortable. He didn't want to be there. So he's not ready and he's not comfortable. And also like children feel that energy. And if it's a negative, Pauly literally would bang his head. Like I know sometimes he would still do it here and there throughout the years, but this was constant to the point where they asked me like, do you think we should get him a helmet? No, I think it's time I take him elsewhere. He would cry. He would be upset, like I was constantly worried. But that’s all that energy. And I think things like this model should be incorporated into at least special education programs or similar models, I think should be, you know, incorporated into special ed programs because they need them, like they need to be… It can't just be, here's your basic education for special ed. LYNETTE: I think it provides so many tools that aren’t naturally provided in the toolkit of the average district. I was just on the phone with a mom from California, actually a grandma who has custody of their five year old, and these grandparents are advocating the best they can but actually kind of like when I first met you in Pauly. They're saying things like, well, the district keeps calling me and saying come get him; like he can't be here. This isn't working. You know, he's not cooperating. He's, he's blank. And they would put an adjective in there. Disruptive or belligerent or some a true adjective. And that I understand. I hope everyone out there listening can picture their own initial understanding where maybe it was before they really understood the why of why kids perform. Because even in our early understanding of kids we to put a label on that they're aloof or not the word one of the words I hate the most or they are despondent, or whatever it is. They're really not anything. They're coping, and they're in their experience. What we have to ask is, what is that experience and why. So in working with these folks in California, like you know, I'm in Ohio, you're in California. What I'd love to do is help you find a neurodevelopmental model that is going to help them ask the question and answer the question, “why is he appearing to be ____?” And once we understand that, we have more opportunity. So calling a parent like I know they did with you, Sam, understandably because they didn't know what to do either. And so come get your kid you know, how can you make a living? How can you get yourself -- talk about your own routine – and getting yourself okay? That's really hard to be interrupted as an adult when you think your kids okay in the hands of capable people who are trying to help them, only to find out that they don't feel so capable. So they're asked me to come and get him. And that's a cry for help from the districts. Or the agencies where these kids are, and really don't have all the tools that they might if they understood The S.U.C.C.E.S.S. Approach (sm), and that's what we're trying to do with this podcast. And the class is, provide those tools. RICH: Well, you know, in this immediate society that we have today, right, you know, we can get anything at the YouTube… we can get through Google… the fast food culture. This whole idea of getting things and getting it fast, that we forget that it's not about the what; that we get our hands on, but asking that “why. If we just stopped for a second and took that pause…take a pause and think about why things happen, we probably would lessen that to about 85% of the problems that we have. LYNETTE: Right, and I encourage that to happen fast because to Sam's point, Pauly who was not only unready, but was also not comfortable. And that's a hard place for kids to be who's already stressed by their existence and the situation of sensory processing or information processing challenges. And that's for them to be uncomfortable. RICH: Well, Sam, thank you so much for your testimony and witness to The S.U.C.C.E.S.S. Approach (sm) today as it relates to your family and to Pauly, and really to share that with all of our listeners in the several countries that were being heard in now. And hoping to give a little light and relief to what they might be going through. So thank you for sharing your story with us today. SAM: Thank you guys for having me. I enjoyed it. LYNETTE: So today, listeners, I would like to challenge you all to think about relief. Identify concretely, identify things that bring you relief or lessen that strain. And when you have some identified, carve out time to use them, carve out time to access them. So for Sam, she put herself into knowledge and research and awareness -- that brought her a sense of relief. Of course, the obvious relief when your kid gets what he needs, you feel that visceral as a mom, that visceral Thank God, I've got some relief. But even if it doesn't come, you have to find things for yourself. So research or get some respite if that's what you need, or get into a hobby or sometimes even volunteering, you know, sometimes seeing something bigger than yourself, brings you this sense of distracted relief that you're not just in this alone or struggling. You're not the only person struggling. So find those things, identify ,them and carve out time to do them. RICH: Our episode with Sam about successful Pauly started out with a beautiful story about the adventurous Pauly and that he was always willing to want to go skydiving and immediately I saw the metaphor of how, before we can jump from this plane that we call autism. We have ITC as a resource and our proverbial parachute to ensure the safety and care and a team that is there for you in all facets. She also shared with us some useful tips about knowing your state or your country's resources or lack thereof, for your loved one with autism. You know being an advocate as strong is strongly encouraged as part of The S.U.C.C.E.S.S. Approach (sm) model as a way to build you're just right team as Lynette likes to say. What do you think is our that our listeners should take away? LYNETTE: Well, one of the things that really stuck with me that Sam was talking about is that we all -- and our kids included -- can continue to learn. And so we are sometimes the learner; we have to be open to continuing to learn new things. But we can also be the teacher and educate others whether that's a parent or a teacher. It's a it's a continuum of learning and teaching so we’ve got to really be good at both of those things and stay open to doing both of those things. And then another thing that came out and Sam's witness that she's actually using professionally is working hard to meet not just Pauly, but working hard to meet her clients where they're at. And I know her well enough to know it also means meeting your husband where he's at and meeting Isabella, her two year old where she's at and on a day that I'm crazy and running around, meeting me where I'm at, like you have to understand everybody's readiness, that readiness phase -- we all have it. Sometimes we don't when we're not ready, recognizing that meeting each other where they're where when we're at a state of readiness that needs to be optimized, and then proceeding with whatever it is that we need to make contact about. RICH: We would love for you to connect with us. Leave us feedback, a story or a question you're thinking about through our Speakpipe page. You can leave us an audio recording and ask away. Who knows, you may even be featured on one of our episodes, you can reach firstname.lastname@example.org/connectwithsuccess and use your phone or computer to leave us a voice recording. We'll put the link in the show notes as well, but that's www.speakpipe.com forward slash connect with success. LYNETTE: We hope that you learned something today to help you on your journey with autism. We'll share more on our next connect with success podcast. Until then, expect success. RICH: The S.U.C.C.E.S.S. Approach (sm) is a registered service mark protected under intellectual property law. Unless otherwise specified, all music, audiovisual and proprietary content shared in this podcast is property of AWEtism Productions LLC and its sister agency Integrations Treatment Center. Use of this content is unlawful without the expressed written consent of aforementioned agency. For more information about The S.U.C.C.E.S.S. Approach (sm), Please go to our website at www.thesuccessapproach.org.
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