[00:00:01] Speaker A: Welcome to Shining Through Inspire Voices of Autism with show host Jennifer Dantzler. My name is Veronica and I have Williams syndrome. Thank you for taking the time to learn more about the world of autism. If you enjoy what you hear today, don't forget to subscribe to this podcast.
[00:00:20] Speaker B: Hey there, everyone. This is Jennifer Dantzler, and I'm the executive director and founder of Inspire nd, a nonprofit whose mission is to create truly inclusive communities through education and engagement. The goal of this podcast is to shine a light on real people and their stories in hopes of inspiring others who are on this journey of autism, either themselves, their child, their loved one, their coworker. I truly believe ignorance is not bliss and we cannot be inclusive communities if we do not understand the people in the community. With autism now affecting 1 in 36 people, we need to get louder about this topic, and that's our goal. During this podcast. We recognize that autism is a spectrum. There are a lot of people with a lot of different needs, a lot of resources available or none available. And we know that in every episode we can't meet everyone's needs for their specific interest. However, we hope that in each episode you do gleam some kind of insight as to how you can help your child or yourself be a better advocate. And as we go through our podcasts, our goal really is to address the entire spectrum, the various needs, the various environments that we're going to be in. And we hope that there's something in every episode for each one of you. So let's get started.
And I am here with my good friend L. Jean Muscat, who I have known for over 30 years. Welcome to the show, Elgine.
[00:01:47] Speaker C: Thank you. Glad to be here.
[00:01:48] Speaker B: It's so funny because we're both sitting here so nervous because we've known each other for so long. And part of our challenge is going to be how do we get 30 years of experience, knowledge, friendship and memories into a 20 minute episode? So hold onto your seats, people. Here we go. L. Jean, I've known you for 30 years because of your son Brennan, who is on the autism spectrum.
[00:02:08] Speaker C: Right?
[00:02:09] Speaker B: And Brennan is now how old?
[00:02:10] Speaker C: 32. Birthday a few days ago.
[00:02:12] Speaker B: Okay, so he just turned 32, which means that makes you and I pretty old. But that's okay.
[00:02:17] Speaker C: That's okay.
[00:02:18] Speaker B: As we're sitting here now on this thing called the podcast. So, L. Jean, tell me a little bit about how we first met, about our first visit.
[00:02:25] Speaker C: He was diagnosed in San Antonio right before we moved to Houston. Took me a month or two to take it all in. Got to Houston, got connected to a group here in Houston just to kind of figure out where I needed to start. I had read Let Me Be youe Voice and I knew that we needed to get some sort of a program going for him. Did not have a program in place. And one of the people in the group called me and told me you were in town for a consultation and that I should call you. She's not going to talk to me. I don't even have a program. I mean, I don't know what I'm doing. And I called you and you agreed to come. And this was pre cell phone. So you got very, very lost coming to my house. You almost turned around, went back to the hotel. You told me later. But when you finally did get there, Brennan was probably at his all time worst. He was hungry, he was cranky. You sat down on the floor and worked with him for just 10 or 15 minutes through what I thought was like some really bad behavior. And you just got up and hopped back up and you just said I see some really great things. And it kind of blew me away.
[00:03:29] Speaker B: I do remember that. I also remember coming down to Houston because I was from the Northeast and I didn't understand this whole islands and median in the center of an average neighborhood street. And so I didn't understand you look past that to make a left. And I remember that very vividly of almost turning around. And I can't imagine if I had turned around.
[00:03:47] Speaker C: I am so grateful you did not.
[00:03:49] Speaker B: How different our lives would be. I'd like to say that, you know, Brennan's life is better for it, but honestly I know that my life is better for it for sure. So I'm just gonna fast forward for a second to Brennan now. You said he's 32.
[00:04:03] Speaker C: Yes.
[00:04:04] Speaker B: And what is Brennan doing now?
[00:04:06] Speaker C: He is a registered behavioral technician, rbt. He works with young children and adolescents that have some that are somewhere on the spectrum. It is a little bit challenging for him, but he gets through it and he likes to do it because he likes to advocate, he likes to be a voice. He also does a lot of work with the high school sports teams. He did that when we integrated him into public school back in ninth grade. And we needed to switch our focus from academics to vocational. And the school was really, really good at giving me that option. And that was where he really liked to be with sports. So we got him into the sports management and sports training. And he still to this day goes to the baseball games, the football games, the basketball games. He keeps the books, he keeps the timer on the clock, videotapes. It's just amazing how involved he still is.
[00:04:57] Speaker B: It really is. And so I want everyone to have our listeners to have a picture of where he is now because I do want to go back a little bit and talk about where he was when he was first three and how we got to where he is. Before we do that, I do just want to share a quick story before I forget. So as L. Jean mentioned, he was one of the managers on the basketball team at the high school. And when my son was on the basketball team, he was a junior coming into the high school and sat the bench quite a bit. And the very first time we went to watch a game, my son was benched the whole game. And Brennan was on the other side. So I was texting with Brennan and I said, brennan, what's happening here? What's going on here? And he said, jennifer, if you're about to be a level 5, I need you to use your coping strategies. Do you need me to come over and help you use your coping strategies? Because I need you to stay cool, calm and collected. And I just laughed through the whole rest of the game because he was literally using what we taught him on me. But it was actually very, very true. And it actually made that game where my son was benched the whole time a lot easier and a lot more enjoyable.
[00:05:59] Speaker C: You were in mom mode.
[00:06:01] Speaker B: I was in mom mode. And Brennan quickly reminded me I needed to use my tools. Whenever I think of him, I think of that story and I smile. Okay, so now let's go back to when he was three.
[00:06:11] Speaker C: Okay.
[00:06:12] Speaker B: And you had me come in first. We did initial consult in the home and then you had me go into the school.
[00:06:17] Speaker C: Yes.
[00:06:18] Speaker B: Talk a little bit about that.
[00:06:19] Speaker C: Oh.
He was eligible for public school when he was three, so we put him there. It was a long drive into the special clinic in Houston that he was doing. And it was only a three hour session, which meant I was gone from the house for almost six hours a day. I had a newborn daughter at the time. It just wasn't working. You told me he was ready to go, so we did it. And we just butted heads on a lot of things. I mean, they were using the TEACH method, which, Jennifer, you can explain what that is. It's more like a picture system where they follow directions on a hand drawn picture and then they move it on a Velcro strip to the other side once they've completed that task. And then they visually go back to the strip and pick the next task and do it. They're not supposed to have communication during all this. And he was very definitely trying to engage in communication, and he was being punished for that.
[00:07:14] Speaker B: Yes, I remember when I was observing. So for the listeners, the TEACH method is a really great method. It's to be used appropriately and it's to be used in the right way and in the right time. And unfortunately, sometimes, as with all of our strategies, they can get overused or misused. And so it is wonderful methodology for teaching independence with skill. But I remember he was doing his schedule, and then he completed one activity, and he stood up and shouted, I did it. I'm going to show this to Mom. And so, of course, that filled my heart with joy for his desire for joint attention, his desire for pleasing mom. And yes, that's where he had a token lost or a consequence for kind of shouting out. And that was the part that was probably not where Andy Bondi intended for that to go.
[00:08:02] Speaker C: Right.
[00:08:02] Speaker B: And so that's when you and I talked about what should we do next to create more of an engaging atmosphere for them. Just a little clarification for listeners. Within the public schools, some of the challenges are these poor teachers get 12 or 15 children in their class with maybe one para, and they have to create systems that help keep all the children safe and on task. But that doesn't always create for engagement, for social opportunities, for individualization. So if you're a teacher out there in the public school in the state of Texas, I commend you. You're doing everything you possibly can be doing. Again, a whole nother podcast. And Tangent is public school funding for special ed that we won't go down now. But there's a lot we have to do so that kids like Brennan can get the individual attention for the skills that they need off that soapbox now. So you pulled him out and then what did you do next?
[00:08:57] Speaker C: We put him in a private preschool. It took us a while to find one that would accept him. His behaviors were still bordering on disruptive in the classroom, which is where I drew the line. If he was going to be disruptive on a consistent basis, then that wasn't the right place for him. But with an aide, we found a school that was willing to take him. It was a Montessori school. Everything was just fabulous.
[00:09:18] Speaker B: And then shout out to Kathy Greenfield.
[00:09:20] Speaker C: Kathy Greenfield.
[00:09:21] Speaker B: Definitely one of my faves.
[00:09:23] Speaker C: One of my faves, too.
From there, he went into a Christian school because he aged out of the Montessori school. And an aide followed him pretty much every year until he was in fourth grade. And he needed less and less from the aide, but he fit in nicely with the class. I had open conversations with all the parents about his abilities and his challenges, and all the kids were really supportive of them, and that was awesome. And I take that mainly from the parents educating their kids how to treat somebody who's a little bit different than they are.
[00:09:58] Speaker B: So let's talk about that for a minute, because I know a lot of our parents are often hesitant to disclose about their child.
But my experiences, as well as yours have been. It doesn't usually backfire. It usually helps so that the other kids can understand why a child might be doing something they're doing. And when not given the right answers, the other kids are left to then make their own judgments, tell their own stories in their head that are often inaccurate. So your experience was that disclosing his autism didn't set a barrier on top, it actually opened up doors for him.
[00:10:30] Speaker C: Yes, absolutely.
[00:10:31] Speaker B: And I remember back in. It was preschool or kindergarten, and I guess at the time we would say he had hyperlexia. And I remember he could read every Crayola color.
[00:10:41] Speaker C: Yes.
[00:10:41] Speaker B: And so he was brilliant. And so we worked with the teachers to where now all of a sudden, they taught other kids to go over and say, if you don't know the name of that color, go ask Brennan. And Brennan could read all these very complicated Crayola colors, and we turned that into a real asset. And the other kids just thought he was brilliant, just brilliant for reading those things.
[00:10:59] Speaker C: Just for the record, he didn't read the colors. He knew the colors. He read it the first time, but then he remembered all the colors.
[00:11:05] Speaker B: Right.
[00:11:06] Speaker C: So he didn't even see the label.
[00:11:07] Speaker B: So that's such a great example where teachers can then take something, a very specific splinter skill, if you will, and turn it into something really amazing where, like, again, the other kids just thought he was brilliant. Right, right. Okay. So then we fast forward to so then he did the Christian school. I would say one of the things I also always knew about you or respect about you is that you were always a big advocate for him and you never let them lower the bar for him.
[00:11:36] Speaker C: No.
[00:11:36] Speaker B: Can you talk a little bit about that?
[00:11:37] Speaker C: I always had to set the bar just a little bit higher than where he was comfortable. And when he started to feel challenged, that's when I had to kind of look at the bar and adjust it. We had it set up during his elementary years that if he was getting overstimulated they would take him out, get him a drink of water, or they take him back and let him swing for a few minutes. And it was just a very discreet thing. There wasn't a big deal made about it. He just would come and go with his aid as needed.
[00:12:03] Speaker B: Let's fast forward to high school and you mentioned earlier about how then you had to shift gears from academic to vocational. And I know for a lot of parents that's almost another grieving period. It was just like when he was first diagnosed.
[00:12:17] Speaker C: Right.
[00:12:17] Speaker B: And so talk a little bit about why you came to that decision and how you worked through it.
[00:12:23] Speaker C: In his middle school years, the academics were really getting pretty difficult for him. He's really, really good at math. He can work problems in his head, but if you ask him to show his work on paper, not going to happen. So that was a challenge with math and then science, history just wasn't interested. It was hard to get him interested in something that he just didn't have a passion for. English. He did great. He wasn't good at reading a book and writing a report on it or something like that, but he was really good with his words and his vocabulary and punctuation and that kind of stuff.
[00:12:54] Speaker B: But so then why did we switch to more vocational? Was he losing his joy? Was it just getting.
[00:13:00] Speaker C: No, what was happening is he'd come home with homework and I would do his homework for him so that I could reteach it to him. So the poor kid was in school all day, had a short break, sometimes a long break depending on how much homework he had. And then I nailed him again from 7 to 9, 9:30 until it was bedtime, trying to reteach these concepts that they were teaching in school. And right about the time that ninth grade rolled around, I just realized that college wasn't in the cards for him. And the high school had a great program that I was hearing more and more about. So I did re enter the public school with hesitation. Took me about six months to work. We did halftime at public school, halftime at private school. But during that time they really gained my trust. The programs fell into place and it just. It was always a huge relief to me to know that he was productive and it didn't have to be in an academic sense.
[00:13:56] Speaker B: Yeah, that's huge because I think for all of us as parents, we tend to have these from the moment that our children are born. These prescribed. Like, this is my vision for my child. And then when any child, neurotypical or neurodiverse, decides to change gears from that. It's a shift for you in general, but for a parent of someone with autism, it's even more exacerbated. Right.
But fast forward to now. It appears that that was the right decision. It was because Brennan is a lot happier. He has his own autonomy, his own identity.
[00:14:28] Speaker C: Y.
[00:14:28] Speaker B: He lives on his own.
[00:14:29] Speaker C: Yes.
[00:14:29] Speaker B: Right. That took time. So can you talk a little bit about his living situation and how. How and when he kind of moved out and how that's looked.
[00:14:38] Speaker C: My daughter had an apartment. She's about two, almost three years younger than him. And she had an apartment here in Kingwood. And she got this wild hair that she wanted to move into Houston to be all classy and be with her friends and everything. And her lease wasn't up. That put him at what, about 24, 25 years old. And we thought, well, why not just put Brennan in the apartment? Be like a trial period for him, see how well he copes with not living at home. And he served out the rest of release. And he did great. He just really, really did great.
[00:15:11] Speaker B: So. But it's really been a. Like a shaping thing. And there are times that he'll come stay at home for periods of time. Very. For various reasons. Covid family issues, what have you. Right. And I think for a lot of parents, we also get in this natural. It's all or nothing. Right. For anything. And especially like living. And so I think another thing for parents to understand is it can be progressive, it can be in stages of comfort level.
But let's talk a little bit. So Brennan is now an RBT and he does a lot of the team support, but he also still gets coaching.
[00:15:45] Speaker C: Yes.
[00:15:46] Speaker B: Through Project Beacon and so. And talk a little bit about what they focus on during coaching.
[00:15:52] Speaker C: Be honest with you, he's so independent that I don't always know.
[00:15:55] Speaker B: That is a great answer because that means he's truly doing that his own. I know a little bit about it and I know a lot of what they focus on are things like healthy eating habits.
[00:16:04] Speaker C: He's working on that.
[00:16:05] Speaker B: Yes, he is working on that. Schedules. Right. Things like maintaining hygiene, maintaining health and fitness. I know there's been a few times he's had things like the noisy neighbors that he's had to learn how to cope with and have alternative solutions for. Right, Exactly. And so I think an important thing also for our listeners to hear is I don't want parents and listeners to think you do these things for four years and then it's done.
[00:16:30] Speaker C: No.
[00:16:31] Speaker B: In some form. It might be a lifelong support. It just might change what that support looks like over the years to be appropriate. Right.
[00:16:40] Speaker C: Yes.
[00:16:40] Speaker B: And I think sometimes, unfortunately, I see a lot of parents who, in elementary school, when the social skills and such might not be great, but they make it through, then they start getting to middle school, high school. And those social skills, those social nuances, those circles of friends aren't addressed. And then some of our guys kind of get themselves in trouble. Right. They get themselves into situations they're not familiar with or not really reading the situation. Right.
[00:17:06] Speaker C: Correct.
[00:17:07] Speaker B: And so I know to not go into too much. I know that Brendan is not. Does not have a major focus in the dating scene, but he does have a focus in the friend scene.
[00:17:15] Speaker C: He does.
[00:17:16] Speaker B: And I know that things like the teams that he's helping support, like those are his communities. Right. I commend you and Jay and Jenna all because I think you have been an incredible support system for him. And I think to what you said earlier, you've always tried to raise that bar just ever so slightly, but continuing to raise it right. While also respecting his desires and needs as an adult. Can you just briefly talk a little bit about the struggles you've had with vacations?
Because. Right. Some of the world of autism, and particularly Brennan, is life is black and white and you follow rules.
[00:17:53] Speaker C: Yes.
[00:17:54] Speaker B: And so this concept, if you think about it, of PTO is very subjective. It's very gray.
[00:17:58] Speaker C: Yes.
[00:17:59] Speaker B: And I know you like to travel as a family, and there's been some road bumps because Brendan doesn't want to take time off of work. So talk a little bit about that journey.
[00:18:08] Speaker C: We traveled a lot when he was little. We are Disney people. We are cruise people. We are Europe people. And he went with us, and he never uttered a peep. As he got into adulthood, the rules have become more rigid for him, and his routine has become quite rigid. He's just not comfortable being away from home. He's becoming a little bit more reclusive in wanting to stay at his apartment and follow his regular schedule. So it's a fine balance between realizing the quality time you can have with your family and what that means and us understanding his need to maybe cut our vacation short or he'll. He'll fly. He flies out by himself and everything. He'll fly out and maybe join us for three or four days and then fly back, usually for basketball or another sport or something. And it's just an adjustment we've had to make as we've had a lot of family vacations that partially involved him and then partially has not.
[00:19:05] Speaker B: And I think that's the important piece is initially, it was a really hard struggle because the family time is really important for you. But then he valued the work.
[00:19:13] Speaker C: We always assumed that he would want to go with us, anywhere we went. And that is still our assumption to the day, if we had it the way we wanted it. Right. And it took us a while, and sometimes we have to pinch ourselves and remind ourselves his angle, but I think we've gotten to a good medium place with that.
[00:19:32] Speaker B: Yeah, I think you really have created that balance to this vacation or these three days are required because we're doing something particular and whatever you want to do above and beyond that. Now, Brennan's fortunate enough that he can travel by himself, and you are able to create those compromises. And we recognize that not every listener maybe has a child or they are not someone themselves that can travel by themselves. I remember there's one time you called me because his flight was very delayed, and you're worried about him on the plane and all of that. And I think he was actually better than you and I as far as.
[00:20:00] Speaker C: The confidence, because I think he was alone, and he knew that he had to deal with the issue. There wasn't anybody there to complain to, to be frustrated with. He recognized the situation, and he knew that he just had to handle it.
[00:20:14] Speaker B: Yep. Yep. Okay. So now, looking back over the last 32 years, what is something you would like to tell a parent of a newly diagnosed child?
[00:20:25] Speaker C: Follow your gut. If something doesn't seem right to you, follow up on it. I remember when he was really little, he did parallel play with other kids in the neighborhood in the cul de sac. He imitated a lot of behaviors that he saw them do. And then I saw him go back into public school. He didn't know how to stand in line because none of the other kids knew how to stand in line. And he didn't know how to follow a routine because the other kids didn't follow a routine. And I just saw so much more potential in him that I just needed to get him out of that type of environment, into an environment where I could control the bar. Mm.
[00:21:00] Speaker B: Yeah. No, that's great insight. And I know not everyone can always afford to do that financially. And you've always said that you're very grateful that you've been blessed to be able to do that, but for those of us that are in public school. Right. The biggest piece of advice we can give is advocacy. And honestly. Right. The squeaky wheel gets the oil and so you have the right as a parent to be in the know. You have the right as a parent to expect data and expect communication, to be part of the ARD team, to really be collaborative, because you are the person who knows your child best. There might be different things that they do in school than they do at home, but it is very important to know that you do need to advocate. You can also hire advocates to help you if it's a little. Because arts, we all know, can be a little overwhelming. Can be a little overwhelming. And before we close, I actually just want to ask you, tell me about the story of the time that you lost your credit card. How old was Brennan? And just kind of.
[00:21:55] Speaker C: I wanted to be probably 25, 26 years old. And he had taken me on some errands, and we had been to a few places, and we ended up back at the grocery store, and he waited in the car for me. I went in, got my groceries, came back out, and I'm sitting in the car and doing my OCD thing. I'm checking to make sure I have my credit card. It's like, it's not there. And I'm like, oh, man. You know? And so I'm just kind of in a little bit of a panic, but I'm not really showing it because I've got to deal with this. But I told him, I don't want to leave this parking lot till we get this figured out. And I called all the places I had been. They didn't have my credit card. And then I finally just said, I'm going to go back inside the store. So I went back in the store, went to the aisle where I checked out, and there happened to be a manager walking by, and I asked him if anyone had turned in a credit card. And he said, yeah, he said, someone just turned it in. So I went in, got the credit card, they asked for my ID and gave me credit card, went back out to the car, and Brennan was just like, mom, how did you do that? How did you not panic? How did you not just freak out? And I said, because I didn't have a choice. And I realized at that moment that teachable moments never stop for neurodiverse kids. And for neurotypical kids, there's always lessons that they can learn and always situations that you can guide them through and to advise them through. Being a parent never stops. It just doesn't stop.
[00:23:21] Speaker B: That's right. That's right. And so I think, you know, hopefully what the listeners heard today was again, one child's journey through his autism. Definitely some highs, definitely some lows, Definitely some. I'm not sure what to do next, but at the end of the day, as L. Jean said, it's always about raising that bar a little bit and about following your gut. So I really appreciate having L. Jean on this podcast. I'm not going to look at her right now because I'm going to get all teary eyed because again, we have a long time, very special history and I am so grateful for her. I'm mostly grateful for Brennan because he just puts a smile in my heart every single day.
[00:23:58] Speaker C: He does that to a lot of people.
[00:24:00] Speaker B: So thank you all for listening and stay tuned for the next episode.
[00:24:04] Speaker D: Do you know the most important factor in your company's success? It's your people. They're the heart of your business. So how do you harness this potential? Insperity can help. From recruiting and onboarding to employee development and retention, we'll help you build a stronger, more resilient organization. See the difference the right approach to human resources can make? Because how UHR matters? Find out
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[00:24:32] Speaker A: Thanks for joining us on Shining Voices of Autism. If you enjoyed this episode, be sure to subscribe, leave a review and share it with others who want to celebrate neurodiversity. Until next time, keep shining.
