This blog post is based on podcast episode titled "Successful Joshua" which can be found on Spotify, Apple and other podcast platforms, or here: https://www.thesuccessapproach.org/autism-podcast
The Connect with Success Podcast with Dr. Lynette Scotese-Wojtila and Dr. Richard Smith helps 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. Today we’re going to hear how The S.U.C.C.E.S.S. Approach (sm) has impacted our first parent guest and her son’s life. And Dr. Lynette Scotese-Wojtila is here helping us digest all of The S.U.C.C.E.S.S. Approach (sm) concepts in any given situation. Our concept for this episode is Parent Perspective LYNETTE: We're going to focus today on parent perspective and seeing both autism and The S.U.C.C.E.S.S. Approach (sm) through the lens of the parent. RICH: All right, we have with us here Stacy Wilder. And your son who went through the center is Joshua. So tell us a little bit about you, Stacey. STACEY: Well, my name is Stacey. I have four kids all together. Josh is actually our oldest. My husband and I just celebrated our 25th wedding anniversary the other day. So Joshua is 22 He just turned 22 Which of course a big deal in the DD world. So we're figuring out a path for him and adult services, but he's my oldest and then I have a 20 year old son 15 year old daughter and a 13 year old son. LYNETTE: A big happy family. STACEY: So educationally and professionally, I'm a social worker, although for many, many years I was primarily a stay at home mom. Only recently have I been working as the social worker at Hannah's home, but very, very part time, but it kind of works perfectly in with her life. RICH: Amazing. So what are some things that you guys like to do together as a family? STACEY: Oh, let's see watch Marvel movies. Yeah, RICH: Okay, so Team Captain America or Team Iron Man? STACEY: I am not that passionate… LYNETTE: Honest answer! RICH: Well, that's wonderful. And I hope you guys will enjoy getting to know Stacy and Joshua and their attorney as we head into the message for today's episode. LYNETTE: So thanks, Stacey, for helping us to get to know a little bit about you. Tell us a little bit about Josh so we understand him as a person and then maybe you can go right into how it came to be that he was introduced to ITC [Integrations Treatment Center]. STACEY: Right. Oh gosh, there's so much to Josh. Trying to figure out what to focus on. So I mean, Joshua has to go way back, Josh was typically developing when he was younger. He developed words, he was interacting with us socially. I remember playing peekaboo and naming all the animals and the sounds they made and then something happened and he regressed. And it was kind of like he fell into a pit and we've been trying to dig out ever since. That’s the way I kind of think about it in my mind. So that started you know, the route to early intervention with a lot of different school placements, some more great summer, kind of nightmarish. And so like to fast forward to now just tell you a little about Joshua's personality. He is so smart, as you know that he's so smart and so funny. He's got so much personality, which is always a hard thing when you read about him on paper. He looks one way, but then you meet him and everybody that meets him loves him. LYNETTE: if you can think back to how it came to be that he was an ITC bringing all that good humor and that intellect that we do know and respect. Yeah, tell us about that… STACEY: Funny enough. He was at ITC when he was much younger. And I have to say there have been several times that I've thought,” I wonder what would have happened if he would have stayed at ITC.” But he didn't and we can't go back and so he was in ITC for a very brief period when he was much younger. And then like I said, all the different school placements and then he was at a school placement that I'd say we were pretty happy with. He was getting work experience, going to different places and that sort of thing. And then COVID hit and he was home and that was a nightmare. Like trips to the hospital because of out of control behavior -- nightmare, because just take away that structure that he thrives on, and all the things that he loved doing and it was just not good.
So when it came time for summer programming, I remembered ITC, and I looked into I gave Lynette a call and his school district was willing to go that route. So he started and so he did so well for the summer program that once it was time to start his next school year, which would be his final one, wanted to make the most out of that; and really advocated for him to continue at ITC and they agreed and that’s how he ended up at ITC. LYNETTE: Yeah. I remember the history where he first came to the center. I don't remember more than a couple of sessions. I think we were focusing on music therapy at the time, if you remember, or trying to get him engaged through music because he was new to us. And I don't remember his age, but he now is 22, so this had to have been…
STACEY: Four or five years …before kindergarten. Okay, yeah… LYNETTE: I was thinking at the time he came back that, oh, that's more, that's what I remember. Oh, remember the early years? Yeah. Wow. So he's had a come-and-go, come-and-go, kind of sporadic, experience with the center and he came back kind of full throttle. And I'm glad we got on when we did. And I have to shout out to the districts who really understand that there is a place for these kids at the center, even temporarily. I mean, I always tell families, I love your kids, but I don't want to know them when they're 18. I want to help them early on. I want them to be where you want them to be; if that's at the district, and oftentimes it isn't, but if it is, great. We want to help you get there, get back there. And if it isn't at the district and is with us, we want to help him or her get the most out of our services that we possibly can with the support of the district who oftentimes writes the IEP and such so it's just a great relationship we have with your particular district and we so appreciate them. RICH: So what about your experience at ITC was most surprising? STACEY: I think one of the things was the just the level of collaboration. I mean, I don't want to… Josh has had great teachers in the past that were very accessible, but just the level of collaboration with one and the rest of the staffs, their availability and communication through Google Classroom, the pictures. Just being so… because, you know… what I didn't mention is that Josh doesn't live with us. So let's see, 2016 is when we made the change. We were looking for a larger home, we needed more space. I found a place around the corner and the next morning I woke up thinking, I wonder if there's something we could do with this home. That would be a future plan for Josh. And so, so all the doors open and everything worked out, and so he lives in that home still, he stayed in that home, and so he has around-the-clock support, obviously. So we were around the corner, and we're really obviously very involved with his care, but we do not live with him. And so to have that level of collaboration meant that much more to me because I don’t have that daily face to face with him. So I think that would be one of the big things is the level of collaboration, but also just, I think the confidence. I wrote here lack of definite nervousness in my notes, because Joshua's behaviors can be pretty extreme. But there was never…I never felt from the staff “oh, what are we going to do or you need to come get him?” or anything like that. There was such a confidence in their approaches that they would work well with Josh, that there was just a complete lack of that kind of nervousness that was so helpful to me to feel like I could feel comfortable with how he was doing while he was here. LYNETTE: I want to speak to something you said because it's such a great word, Stacy, and I appreciate you saying it. You talk about collaboration. And we have a very distinct understanding of what that is, but it really stems from one of our earlier episodes, Rich, where we talk about transdisciplinary excellence; and that total team approach of everyone working together, creating sort of a supportive web around the child. And you are in a unique situation because yes, Josh doesn't live with you; he lives in the original family home where he was raised, which is a blessing in and of itself. But that around-the-care staff you mentioned was another entity that we were very open to collaborating with, for the sake of having the carryover. So being on the end of the service where the plan was created, I can say that we put a lot of time and effort into trying to make provisions. We would go to the home and work with a staff that we would have the staff come to us as well. And that's how it started in the first summer but when it became an extension for the actual school year and it was the final year of his educational career, the bus would transport him. The school would transport him. And so we lost that direct connection. And even though we had provisions in place, it wasn't always easy for the staff to maintain contact with us but to speak to the point of collaboration means that immediate staff, the family, our center, and the district -- we all work together. RICH: And I think that's the beauty of Integrations Treatment Center in general, is that you guys are so open to work with the different entities because it's about forming that team as we've talked about in many episodes. LYNETTE: And one of the things that will be on my epitaph is this, “It takes a village” -- that is what I believe I always say -- it takes a village, and Josh is the mayor! RICH: Stacy, what has been helpful about placement at Integrations Treatment Center and how is it different than what else is out there that you've seen? LYNETTE: Well, I would say primarily like how individualized it is. Each aspect of his care, like how his day was broken up while he was at ITC. Everything was tailored to his needs. And in so doing. ITC staff was even able to go above and beyond what was on his IEP. So I will say that one frustration for me had been I knew that Josh could read, but just could not get the support for that from schools. So I remember being I an IEP meeting basically being asked, “Why do we want him to learn to read?” So that was really frustrating and heartbreaking. And ITC went above and beyond and worked with him on listening to books on tape, and he seemed to really love it. He would follow along, he would turn the pages, so that was… that was unique. The attention to his sensory needs, making sure those were met. That was definitely a positive component of it. And I think maybe even more than anything else is the high expectations. Knowing… knowing that Josh was in there, and Josh is capable; and he would rise to their expectations. LYNETTE: It's a gift to see him do that. There's nothing more life giving to an interventionist or clinician like myself than to see in a child's eye a light bulb go off that is commensurate with oh my gosh they get me -- that's a gift to see. I think it's rare that they get that opportunity sometimes and to see it is halting, you know that they know that we understand them and it's such a camaraderie moment. And that moment, they're equal. There's nothing different about us. We all have needs we need to be met. And we all have gifts and strengths and challenges. And all that comes through, and just the look in their eye like almost like, thank you for getting me, right? RICH: It's that spark you get as a parent too when you realize, there you are, like, I knew you were in there. Like, you know, you can…and I can respond LYNETTE: And someone else sees that you're in there. Yes. And so there's a community now building around you believing in you, you know, belief is very, very important. RICH: And I'll tell you the room is fun. I mean, you go in, and you see the big swings, and the putty, and you want…I want to jump in there and get in the rice pit! LYNETTE: We’re open. Anytime you need us, we’re there!
RICH: I might be in the rice pit before you know it! So what are some of the greatest challenges The SUCCESS Approach has helped your child overcome? STACEY: I would say that one real obstacle, or real challenge for Josh, is waiting. So if he knows, Joshua does really well with schedules, so ever since he was, I don't know how old, we've done weekly schedule, a daily schedule, and a monthly schedule. And he's actually getting a bit beyond that, which I'm taking as a positive that he used to carry them around like a security blanket to accept that if you can’t find his schedules, that was a problem. But waiting; if he would see that something was on his schedule for the day that he really wanted to get to, he might just start you know, repeating that over and over and over and over. And that can result in some pretty major behaviors. And so one thing that was implemented at ITC was a temporal awareness program where they took a clock -- and that's the thing -- just always thinking outside of the box and just trying to figure out what's going to work well, and this worked really well for Josh. They write with dry erase on the outside of the clock, and so that he could see visually this is when you're doing, you know, when you're going swimming, or this is when you're working with his carrier, and he would follow along with that and that helped. So now we're working on carrying that over, but that was definitely a huge gain for him. LYNETTE: And I kind of want to jump in here it reminds me of the episode that we recently shared, where there are life hacks or you know, getting kids into the community, and the hacks to do that -- autism hacks, we called it; but this is sort of like a life hack too. It isn't to compensate for Josh having difficulty with temporal awareness, meaning waiting. It's teaching him an understanding of the passage of time. And that's what Stacy means by the term temporal awareness. And I remember being in a meeting with you and your team, where I talked about some of the top three things that we were going to need to address and tackle that I didn't think people prior to his life had attempted to tackle, or he wouldn't have these issues if they did or if they did so successfully anyway, and one of them was temporal awareness. So we need to… we needed to really concretize the passage of time because if I say to you “Soon, the podcast will be over.” Everyone listening has a sense that that doesn't mean at Christmas; it is much, much sooner. It's also not the next four seconds. So we have a sense of these abstract terms like “soon” and “not now” and “never” or “later.” I mean, think of the English language alone or any language and the temporal awareness terms that we use every day that everyone else seems to understand. And when what you're waiting for is the van that's supposed to come at two, and it's 12. You get two hours of managing behavior if you don't know how to help that child. So that was the first thing I prescribed as the case manager and lead clinician in his care was a tempo awareness program. RICH: Yeah, reminds me when my daughter was younger, we used to tell ask her all the time, we always had very strict regimen in terms of bath, books, bed, and if it was running a little late, or she knew that the magic number was eight o'clock was to start this regimen. And we would say, “Mattie, what time is it?” She would instead of saying, “eight o'clock” she would say, “It's well past my bedtime.” And she would see the clock and see the eight but not understand like the passage of time because we used to tell her all the time, you know, we have to get moving it’s well past your bedtime, we realized we were putting that into place instead of actually talking about the time and what it was going to take to do that. But I remember very vividly What time is it …it is well past my bedtime. LYNETTE: Because that's what she heard! Very literal. RICH: So Stacy, is there anything that you learned about your child since being at Integrations Treatment Center that no one else knew or explain to you? STACEY: Right? Well, as I looked at this question, I realized Joshua was either 20 or 21 when he started, so I knew a lot about Josh by that point. So I feel like it was more a matter of giving me words to things I already knew. So things like schema. I knew that if Josh went somewhere and something happened the first time, that's how he was going to think of it every time but I didn't know that that was called schema and what that meant. So another one is, a word Lynette was just using, was concretizing. So, we I've been doing that – “Is this concretizing?” Social stories and that sort of thing, of just making them very visual and concrete for him to see what was going to be happening, which has been a huge tool for Josh. So I think it was more that helping me know how to think about things and to put words to and observations and things that I'd already kind of knew, but once you have the concept more solid, than you know how to work with it. RICH: Absolutely. And you bring up a good point because it's about being able to put a label for ourselves, I think on it being able to describe it because we sometimes don't have the words what we're feeling right when we're as parents helping our children trying to explain the world to them, you need to have a basis of it. And I think that's why that online training course is so key for parents who are strapped for time and can't be there in person. So if you've not checked out the Integration Treatment Center on our website, we'll put the link in the show notes, show notes, so that you have the opportunity to be part of that training as well. LYNETTE: It really provides an opportunity to talk on terms that everyone understands to really get to the meat of the matter. Sometimes parents spend so much time explaining the challenge. And once they know, well, let's call that schema. It's like, “How are his schemas coming along?” “Well, I think he's got a new schema for…” so we all know what we're talking about. It's efficient, is efficiency. And here's the beauty thing, beautiful thing about how we help parents learn. Everyone has schemas. So by introducing that vocabulary, you know that his schemas are formed a certain way because of how his autism operates or how it drives his neurological processes. But you have schemas too. If you remember back to [our episode on] information processing, you have a schema for changing a diaper for changing a tire for going for going to laundromat for going shopping, and they do too. The difference is -- the first way that they learn it, it's like a steel trap memory. I always say and ours is much more flexible and generalizable. RICH: But it's also empowering because I mean, I've sat through, you know, IEP meetings and trying to figure out the alphabet soup, that is: IEP, PRO1, CR and you're like, “Can I have a vowel?” And you know, you're trying to figure out your way around the rope to help best suit your child. So it's nice to have that empowering language to understand what's going on. And I think that's the beauty of Integration Treatment Center too is they really do empower you to help take control and understand that. STACEY: Now that you mention it, that's a huge one because really in a lot of other settings, you are that parent and it's tiring and it's really deflating, but I never, ever felt that way interacting with staff at ITC. Definitely just a partner and really, I could tell my input was valued. And that was huge. LYNETTE: So valuable, with or without knowing the terminology, but when you do know it, it's like, “Yay, this mom retained it!” This is an important thing to her. She's latched on to it. Let's build on it. You know, no one's better or worse than anyone else at ITC. And we put families in that domain. So we're equals and the faster we get on the page of that quality, the faster we can be that web of support to the kid. It's really about the kid. So Stacy, this is actually excellent insight and information. So thanks again for sharing it. I have a question that I think it might be important to you to answer. And the question is: why do you feel Josh was so receptive to interventions or the methods we used at the center? STACEY: I think that part of that goes back to what we were talking about, the high expectations and that look in his eye knowing that you got him I feel like one thing that I'm really passionate about I feel strongly about was treating Josh and everybody with dignity. And I think that when you do that, they just they rise to the occasion. So I think a big part of that was the dignity, the connection, the staff that worked one on one with him to set amazing connections with him. Yeah, because they got him because they valued him, and he felt understood as a person. And I think all of that is what made him so receptive to the services. LYNETTE: Beautiful. RICH: But again, it goes back to that building of the team, you know, and knowing just the right supports and really getting to the heart of who that person is, and I think that's the beauty of Integrations Treatment Center right there -- is that each person is unique in achieving their own individual potential. And it's life giving. It really is life giving, and you really feel like you can unlock who your child is, you know, they truly see that spark in their eyes light up and you realize you've made that connection. You never want to let it go at that point in time because you know, you have it . And to know too, that there are going to be sometimes, there are going to be setbacks, it’s to be expected. And you know, when you just have to kind of pull back and start over again, kind of work your way into it. Working through the steps of the beauty of the approach. So, let's talk about…what do you see is the best way for a family to advocate for their child’s needs? STACEY: I think the first thing that comes to my mind is to be the squeaky wheel. Get connected with your local board of DD [Developmental Disabilities]. Make sure you know who your SSA [Social Security Administration] is. In our area it is called your SSA. Know who your SSA is; make sure they're aware of everything that's happening. Get on any wait list that you can and just feel confident in knowing that you know your child the best and just be tireless in exploring avenues. If something's not working, well look for something different. Don't just accept what's handed to you, and get a tough skin. RICH: Well, Stacey, thank you so much for taking the time to talk with us today and for giving our listeners an idea of what that glimmer of hope looks like. I commend you; it's a lifelong journey. Right? But just the fact that as a parent to a parent, thank you for sharing your perspective with us today. STACEY: Sure. Glad to be here. RICH: Maybe our challenge is to take some time to reflect on your team and take some time to be grateful; and just think about the supports that you have. And maybe assess some of the supports that you still need. Because it is an ongoing process. [Music] RICH: As a wrap up to this episode, I think the thing that really sticks out to me is being an advocate, you know being an advocate for your child and sticking by to look for those glimmers of hope when it seems it's darkest. What would you say? Your takeaway from this episode, Lynette? LYNETTE: I think my takeaway is the longevity of support. You know, I think parents struggle with wondering about the future. It's very unsettling for some families. But I think Stacey and her amazing husband and children really have brought to Josh in this example, everything they can and everything that was available to them. I think we have to use that support and extend it so that children and young adults like Josh can live out their greatest potential, no matter what that looks like, the supports don't go away. 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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