[00:00:02] Speaker A: Welcome to Shiny through Inspiring Voices of Autism with our show host, Jennifer Dantzler. My name is Cal, starts with a C, not K, and I'm on the autism spectrum and also TikTok Spectrum. Find my place called Calion Disney Head D. 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. Hey there, everyone. This is Jennifer Dantzler, and I'm the executive director and founder of inspirend, 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 co worker. 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 us. One 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.
I am with my good friend Lynn Kelly, who I have known her family now for over two decades. Thank you so much for being here, Lynn.
[00:01:56] Speaker B: So happy to join you, Jen. Thank you.
[00:01:58] Speaker A: So we're here to talk about her journey with her son. Bill is now 29. I met Bill when he was how old?
[00:02:07] Speaker B: He was 8 years old, and it took us a while to work through the public school system to where there was a placement for him in the program.
[00:02:18] Speaker A: Okay, so let's talk a little bit about when he was first newly diagnosed. Can you talk a little bit about that journey? How old was he? What were you seeing?
[00:02:26] Speaker B: Well, this was back in the 90s when they were still using diagnosis as PDD. No. Which was a pervasive development disorder. Not otherwise specified. Well, it was quickly specified that Bill was autistic. And we can drop everything else. Some parents and family members might have noticed differences sooner than I did or wanted to admit. And by the time we went to the pediatrician, when Bill was almost two, he wasn't verbal. He would like to play with toys in a very sensory way where with the pages of the book, he liked the way the air felt. He was a runner. He only wanted his mother and father to hold him and maybe one other person.
It was pretty crazy. And so the pediatrician said, let's get his hearing tested. And I was like, okay. Well, six months later, you know, we got the hearing tested, but we knew that wasn't the problem. He could hear a pin drop in the other room and start running. And so we went to the next level. If you suspect your child has differences, go ahead and make the appointment. You can always cancel. I was talking to a young mom. Takes months, maybe a year or two to some clinics, which actually adds a whole lot of pressure. If early intervention is the ticket and insurance won't pay unless you have a diagnosis, you are really struggling. So make that appointment. We did get the diagnosis. Started the journey with everything special. So you have special schools, special speech classes, special ot, special occupational therapy, special babysitters. It all costs a whole lot. And your world is driving to appointments. You know, you listen to books on tape, you eat more fast food. You know, it's just a big compromise. And, you know, we did this special program at the children's hospital. Robin Reamer had headed it up, and it was six months of playgroup. So we thought, great. Well, what it was was like, welcome to your new world. There was no cure. It was just showing how you're supposed to interact with your child. I think that was what was stunning. And I still, after 20 years on this journey, I'm shocked that more intervention hasn't been discovered. I thought Bill was going to be cured.
[00:05:18] Speaker A: Right? And that's very true. You know, almost 30 years ago, I mean, we knew a lot less than we do now for being 1 in 31. We still don't know as much as we should know. Right. And so I think. But what I'm hearing you say as a parent is. And this is a lot of what we talk about on this podcast is, but you've got to start somewhere, and time is of the essence, and it won't all be perfect, and you won't pick the right therapy every time. Right. And your life does change. You kind of don't have a choice. Right.
[00:06:13] Speaker A: Second after she finishes her thought, I'm going to clarify that aba, but keep on going.
No, I mean, when you have behaviors they're not responding to, appropriate responses like most children would like to play, pretend and emulate and try to please your parents or please. None of that. It was shocking. I remember grandparents on both sides had seen a lot of living. They were in their 80s and 90s, and they had never seen a child drop to the floor and hit his own head till it bled. Those are the kind of behaviors that we're talking about. So you need help. Once you kind of see where your child is on the spectrum, spectrum disorder, then you have to find the right match. So some schools are teaching the high functioning, and if my Bill, my child was high functioning, then I would definitely want him in that program. And then we toured some schools that were just more warehousing and the children were in cuffs and helmets, and maybe children need that. But we didn't feel like Bill, that was the right placement for Bill. So we discovered it's called including kids, and it was an ABA program. And by the time Bill started with Jen, he was nine years old. And so a lot of bad behaviors were really reinforced and were in place. So we took us many years to work through that. I think Jen saw a lot more with their documentation. I think it was off the chart.
[00:08:00] Speaker A: It was off the chart. So I do remember early on, I think one of the hardest parts for you and Ty and grandparents was the traditional parenting. And traditional teaching wasn't working for Bill. Right. But going back to sort of the early intervention and the aba, I think there are still many people out there who don't understand what ABA is. And just like every therapy or medical intervention, there's good psychiatry out there, there's bad psychiatry out there, there's good neurologists out there. There's bad neurologists out there. But it. I don't know that anyone believes that neurology should be gone or psychiatry should be gone. You just as a parent, have to one, trust your gut, but also, you know, ask the questions and be diligent for your child. But I do remember that was hard for you all because traditional parenting wasn't working for him. Right.
[00:08:54] Speaker B: Well, and I think any parent thinks like if you can love them or it didn't work. And we tried. I would say it, everything before we got to you.
[00:09:06] Speaker A: I always love to tell the story. So Bill came to me when he was nine, and I was actually about six months pregnant. And it was back when my clinic was very, very small and my mom was the secretary. And Bill came in and I worked with him for a little while, and I just, even in those like 30 minutes, saw improvement on him. And then before he was leaving, he got frustrated because I believe you and I were talking and he had to wait and was frustrated and he headbutted me in the stomach. And I remember my mother, of course grandmother to her first grandchild was horrified. And Bill left. And I said, that kid's mine. Like, I want him. I'm gonna help this kid. And sure enough, yes, he did come to us. I remember the data very specifically. He came to us with about 300 aggressions an hour. And I think the key is here, what I want the world to understand about ABA is what ABA is, is about shaping behavior. It's about reinforcing appropriate behavior. And it's really about teach communication skills so that he didn't feel like he had to be aggressive or self injurious. And there was one day, we were a few months into it, and one of his behaviors used to be hitting his head on his knee, if you remember. And I remember walking in because he was having one of his episodes and he looked up at me and he said, I'm mad, Jen. And I knew in that moment this was working, like this was going to help him because he finally knew he could use the words instead of his body to get his thought across. And so you know what? I want to encourage parents. We know autism spectrum, we know a quarter of the population is profound struggle with self injury and aggression. Communication is key. Teaching communication and teaching those replacement behaviors for when they're frustrated. We're not going to make their frustration go away. But even to this day, Bill is 29, and even when the weather's bad, right, he gets a little agitated. But we've taught him to use phrases and to say things. So we're going to go continue to talk about his past. But I do just want to let the listeners know at this point, talk to me about who Bill is now so that listeners can get a picture of how far he's come.
[00:11:13] Speaker B: There's been a tremendous amount of progress. He's no longer a runner. He no longer hits others. He's social. He plans his activities and he wants to know what's going to happen. And so we talk about what's coming up on the calendar and. And he thinks of all sorts of fun things that he would like to do, and whether that's to have lunch with a friend or to go swimming at his uncle's pool. And I think our challenge now is to dial that down a little bit. So some kids, they're afraid that their autistic kids aren't social. Well, Bill can make eye contact and look you right in the eye and tell you exactly what he wants to do. His frustration comes when you won't take him to California to see an aunt or Jen's in a meeting.
She can't talk right now. She's in a meeting. So we're giving him the words. And we still do the charts, which you make boxes and you know what you're earning. So if you're earning that phone call to Gran or. And it. To me, Bill doesn't. It's not really earning it. It just stops repetition. And you give him an X or two and we take a deep breath. And then at a certain point, he'll want to throw the chart away. But he's good at that point.
[00:12:41] Speaker A: So what you call that was the token system. And I know there are a lot of people also in the world who have talked about, you know, they have to be able to move to intrinsic motivation and not this external. But what I also tell people is, do you get a paycheck every two weeks? There's your reinforcer. Do we set up systems so that if we lose so much weight, we get to go buy a new outfit? We do that. That's our external, you know, extrinsic reinforcement. So people want to make more of that than it is. But we all have our schedules, our systems, our reinforcement systems, the things that motivate us. And I think we can't impress upon that enough as far as Bill goes, because, yes, like Lynn, what you're talking about is Bill is too social and too busy. And I don't know that, you know, when he was 6 or 7 or even 10, you imagined that part of the problem is he wants to be on the go in the community all the time. And he does an amazing job in the community.
[00:13:34] Speaker B: He looks forward to all those activities, whether it's going to the Y to clean the toys or deliver packages at the assisted living. I think those are his two favorites.
[00:13:48] Speaker A: Well, and. But after programming, he. He goes horseback riding. And, you know, as your husband always says, Bill also seems to know who the boss is and who's in charge in any environment and picks them out and absolutely becomes best friends with them. And so he has this innate ability to know who to talk to about what. Which a lot of people in the world don't have that sense.
So let's go back a little bit and talk a little bit about. I know it's been a long journey. Was there ever a moment though, that you were able to stop worrying every minute of every day about him? And like, when did things like when did you start seeing. Could you even look at the future and like talk a little bit about that journey, how that's been for you from the, like the obsessive worry to now?
[00:14:39] Speaker B: There's all sorts of step programs, but I think life is a journey in steps. And one of my prayers was that he would be fully potty trained. And he was. That wasn't until he was six years old. And then there was another milestone where he finally learned to say I want. And once you can communicate, whether verbally or writing your needs, it would be like a stroke victim. You know, you're just at the mercy of who's ever around you. And we saw the behaviors go down from there.
Let me just interject. This whole gluten free diet, which works for some. We realized Bill was eating a lot of gluten chips and waffles and ice cream cones. Hold the ice cream. I mean, it was ridiculous. And so we did the reverse. We went to Whataburger and got the 100% meat patty and said hold the bun. So once Bill started eating more protein, like eat the flour tortillas after he ate the chicken, we saw some better behaviors because of the blood sugar, not because of the gluten. That's one thing. That's an aside.
[00:15:55] Speaker A: Yeah. The diet's really hard. Right. Because every time you want to avoid.
[00:15:59] Speaker B: Yeah.
[00:15:59] Speaker A: Problems and problem behavior. Right. So it will just be easier to give what they wanted. The problem is eventually that backs you into a quarter. It's not healthy for him. It. It then restricts his diet and then it becomes challenging.
[00:16:13] Speaker B: And one thing is like every day could be a teachable moment. And so, but one thing I learned from Jen is if you make it a teachable moment, you have to be willing to follow through. So whatever you know, you're going to have to eat four green beans before you can get up from the table. That could be a long time. And so don't do that when friends are over. And if friends are over, maybe you don't try to do the green bean test that night, you know?
[00:16:43] Speaker A: Yep. Pick and choose your battles.
[00:16:44] Speaker B: Choose your battles. But at some point, you have to, like, gut it up and you have.
[00:16:50] Speaker A: To work on it.
[00:16:51] Speaker B: Like, you just work on it.
[00:16:52] Speaker A: You just have to work on it at some point. But maybe it's not when you have the dinner party.
[00:16:56] Speaker B: And so life kept getting easier. And, you know, the one thing I want to say, if you can find patience, is it took Bill two years to learn to tie his shoes.
That would not have happened with me. It was the dedicated therapist that every day they worked on tying his shoes until that task was mastered. A certain point, probably when he was in junior high and we would have these art meetings and it's like, where do you see your son? And I would just break down and sob, you know, every time that question was asked because he looked just like my father and he wasn't going to be like my father. To see that mirror image realized we were.
It came and I feel we're talking about it now and you can't see me on the radio. I'm all smiles. You know, Bill's a wonderful kid. He's brought a lot of joy to people around him. And I feel lucky. Bill was given to us because he was a hard child. I fear he would have ended up in a place with the helmets and the restraining devices.
[00:18:09] Speaker A: Yeah.
[00:18:10] Speaker B: And so I'm glad that we were help him to reach his full potential. We wouldn't have done that alone.
[00:18:17] Speaker A: Well, and I know we've discussed this on other episodes too, that not everyone has the financial wherewithal right to be able to do some of that. But there's still ways to advocate, you know, still trust your parent gut if something is not right in the public school, you can demand communicate wherever their child's at like you can. You can get communication. You have the right to ask for data. You have the right to observe. You have the right to ask questions. It doesn't matter how much money is in your bank account, you have the right to do that.
[00:18:45] Speaker B: We don't see a cure in the foreseeable future. So we are trying to. I'm looking more closely at other activities that are. And one of them I discovered on Rice campus last Sunday there was a mariachi group hosting a free concert. Movies with lots of dialogue or big conversations. That's hard to follow. But he sat through this concert for two hours not scripting quiet. He was trying to kind of do his autistic things with his hands. But he was a Very enthusiastic listener. So that's my goal this summer, is to find more live music opportunities, whether it's in the park or at Miller Outdoor Theater. I think that's something these kids can really relate to.
[00:19:37] Speaker A: Very much so. I think that's an excellent point, and I think it is exactly what you said. Kids like Bill, all of our kids on the spectrum, like, you gotta find that thing. Right. Peter Gerhardt, who's a guru, I think, in the field, one of my heroes and mentors, always tells the story about finding each child's green straw. And he has a whole long story about that. And my clinical team and I have used that for years because, like, what is each child's green straw? And, you know, I definitely. I've seen that for Bill, it's. It's music. Right. But I think for Bill also, he knows if you want to be around him and if you respect him and see him as a person, and then when he knows that and, you know, if you're in Bill's court, in Bill's posse, like, there's no more joy than that, than when you walk into the room and he does his, hey, Jed. And he has the biggest smile on his face. Like, if that doesn't keep you going, I don't know what does. Right. And I remember your husband talking about this on a video we did years ago where he said, you know, who doesn't want to be around people who want to be around you? And that's Bill. Right. I mean, he just brings such joy. Are there times that. Yes, we have to help him set his own boundaries so that his scripting, his racing thoughts, whatever you want to call it, don't get the best of them. Right. But there are strategies you can do for that. And I think one of the most incredible things is that Bill is Bill. Bill is still Bill. I don't think we've changed who Bill would be in life. Right. I think reducing some of the aggression has allowed access to the community, and I think that's Bill. Bill is, you know, on the go. Bill does love his schedule, so that is hard when it. When it changes. Right. But Bill is such an example of, with the right tools as an adult, how he can be successful. We don't need to name specific programs, but I know years ago, we tried to move him out of our center into one or two other places, and it just. They didn't have a lot of. Just the basic foundations, and it didn't go so well. Do you want to talk a little bit about that?
[00:21:39] Speaker B: When you're looking at a program, and that goes for neurotypical kids too. Is early on I got distracted by the new shiny building versus, you know, the teacher that had been doing it for so long. And we made the wrong choice. We opted for the building as opposed to the personnel that is critical. So the buildings can come, the activities can come. People don't go into special ed for the money, which, you know, and, and I'm just amazed at the dedication.
But a really rich program. Bill at first was more than one on one. I think it was two on one. I mean some of the other kids, you know, it was. It takes an expensive village out there. A metroplex Bill is actually at this.
[00:22:33] Speaker A: Point in a one to eight ratio.
[00:22:35] Speaker B: A one to eight. So it's like.
[00:22:37] Speaker A: So it can happen.
[00:22:38] Speaker B: It can happen.
[00:22:39] Speaker A: It can happen.
[00:22:40] Speaker B: And with the right people it will happen. It will happen. Some of the programs could cherry pick, especially in Texas. But I've worked through my forgiveness that you know, they were trying to really cherry pick the kids that were going to go on to college and drive and maybe needed some light support.
[00:23:03] Speaker A: Well, it's easier, it's better for outcome measures. Right. To do that. Unfortunately part of the reality. And that's where some of the funding comes from.
[00:23:11] Speaker B: But. And as the behaviors get more challenging, your options become less and less. And that is really scary. So Bill outgrew a lot of these scary, challenging behaviors.
But the places that we looked at.
[00:23:31] Speaker A: Well, they weren't very enriched. I mean, so they were not. Right. They were warehoused personnel and then even some of the transitional ones for later just weren't very enriched. Right. And I think Bill's a great example where they might have a somewhat lower IQ or not be able to read above a second grade level. That does not mean that they should not be out in the community. It does not mean that they cannot hold down a job. It does not mean.
[00:23:55] Speaker B: And so Bill, you know, he would not be able to shred for eight hours a day, nor would I want him to, you know, like he can shred for a little while. But you know that that's the other challenge is where we are now is to come up with the activities in the community, like washing the toys. But it's a variety of tasks.
[00:24:23] Speaker A: I mean, and a lot of now, you know, what we experience with the young adults is that very rarely do we find a young adult on the spectrum that is up for a 40 hour week job. Right. It's more like four eight hour week jobs are probably or eight, four hour week jobs actually are probably even more the reality of life. And so and Texas funding though creates some challenges for that. I do want to also take this minute as you talked about some of the pivotal behaviors. Wherever I can, I try to also educate that really two of the most important things are toileting, like being truly independent in the bathroom. Because as you're that parent of a seven year old helping them wipe their bottom or standing at the door to make up, make sure they, you know, use the toilet correctly. But then you're doing that at 12 and then you're doing that at 15. Well now they become an adult and who's standing at that bathroom door and it just gets your options then get even more narrow as to where he can go and who he can be with. So I beg you parents out there, really work on the toileting. And when I say have it be independent, it means to be truly independent because you don't want that $12 an hour worker out there who didn't even have a background check in the bathroom with your child. Like that is just the reality. Right. And so things like toileting and independence, safety. Right. Knowing how to use their phone, we know how he knows how to use his phone in amazing ways.
Like those skills are crucial to your point. It's not even as crucial anymore about whether they can tie their shoes because they're slip ons. Right. It's about making sure you're working on the goals that will help them be independent, successful and happy in life. I mean, I think that's the other thing is for the most part Bill is a happy person.
[00:26:17] Speaker B: Very happy.
[00:26:18] Speaker A: Yes.
[00:26:18] Speaker B: And today we're going to meet a friend at the Fine Arts Museum which consists of meeting in one building and walking through the lit up tunnel to find our way to the ice cream shop.
[00:26:33] Speaker A: That's awesome. I love that. I love it. I'm sure I will hear all about it later.
[00:26:37] Speaker B: The museum is free on Thursdays.
[00:26:40] Speaker A: There you go, Z. Don't eat any money.
[00:26:42] Speaker B: No. And Bill now knows he cannot go to the Children's Museum to address what you're talking about, how it's not age appropriate. Even though he would probably still like some of the activities there. But how hard would that be for the young families to see a big kid?
[00:27:02] Speaker A: Yeah. It would cause some, some second glances. Right. But you've transferred that and substituted a very adult, age appropriate activity to go to the Fine Arts Museum. I've never even been to the Fine Arts Museum.
[00:27:13] Speaker B: Well, it's fun. You'll go with us. We invite you to go with.
[00:27:17] Speaker A: Is there anything looking back now, I, I don't believe in spending a lot of time in regrets and, and would have, could have should us. However, for our new parents out there, is there something you look back now and would have done differently?
[00:27:30] Speaker B: If you're just curious, go ahead and make those appointments at some of the hospitals. I think they have Texas Children's, but there's also a wait list to get services through the state, which is a very cruel list. It's about 15 years once you're on. And as I mentioned earlier, I was in denial until Bill was about 15 when we joined the list. And we're still on the list. But that means someone has to die before a place opens up. I just can't believe that's how it works. So I would. I've talked to other parents who, someone she didn't even know, shoved numbers in her hand at the hospital, said, whatever you do, call this number. And she did. And her child started receiving services when he was 20.
[00:28:25] Speaker A: Yeah. So what she's talking about is the Medicaid waiver services in the state of Texas. And once your child turns 18, they qualify based on their own income, not based on parents income. So at 18, presumably your child does not have a lot of income. And if they do, you work with an attorney to get that money out of their name. And you do special needs trust and planning and all of that. But the Medicaid waiver services, it is truly 15 years plus. But once they get access to those services, they get access to everything from day programming to living when they're ready, to nursing to dental, to. To behavior support hours, whatever they need. And it is a lifelong service. So even if you didn't know this and you're listening to this and Your child is 20, I don't care. Get on the list. Because it is a lifelong service. So it's. And so you go to your county dad's office, D A, D S. And so like that's the Harris center in Harris County. It's called Tri county in Montgomery County. And you just call and say, my child's autistic. I need to get on the Medicaid waiver waiting list. What do I need to do? And you take the time and you do it because to your point, Lynn, you'll come up at some point.
[00:29:37] Speaker B: Yeah, just do it.
[00:29:39] Speaker A: Yeah.
[00:29:39] Speaker B: And that is the number one, the biggest takeaway of all. I would say be patient. You know, you'll be surrounded by, you know, my mother still today asked you Know, when is Bill going to start riding a horse with reins? And the answer is never.
It's therapeutic. And he also takes piano lessons once a week, and she's still waiting for him to be on the Today show as the savant.
So we all need to have realistic goals.
[00:30:13] Speaker A: We do. It becomes your new norm, your new normal. Right. But I think to that point, I hope what listeners take away from today is Bill had a pretty rough start. But Bill at this point is thriving and shining. His parents were able to continue to fight for him and still do right for finding the right people in his life. And I know them well, and I know some of the people in his life are not educated, credentialed people who take about and do things. It's people who just care about him. And so it doesn't always have to be this very important person. It just needs to be people in your life. You know, one of the things I always talk about is autism can be pretty isolating, and it is very important, you said it earlier, to create that village. And so also for you listeners, don't slowly close out those people's work. Yes, Grandma might not fully understand, but that doesn't mean Grandma shouldn't be there. Right? Yes. Lynn needs to adjust the thought concept. Right. Like. Like grandma's expectations. But over time, I think slowly, you stop going to that block party. You stop going to that family Thanksgiving. And you haven't really done that.
[00:31:22] Speaker B: Oh, gosh, no. There are communities. Many churches have special needs outreach programs. And you'll never see a more loving group of volunteers that will play basketball, will order pizzas.
Do not just what Jen said, cut yourself off.
I have always been rewarded by the friends I've met. When I've taken other moms, you can laugh. These kids are really. They're unique in the way autism manifests itself. And in Bill's class, there's a golfer and a greeter and there's karaoke singer.
[00:32:07] Speaker A: A karaoke singer, a dancer, you name it.
[00:32:12] Speaker B: So it's a lot of fun. And you need that support.
[00:32:15] Speaker A: You do. You do. So hopefully today, I think the message is you just, you keep on going because. And you know, you just have to. But also because there is hopefully light at the end of the tunnel. But it's about finding those people in your life that will support you, that will support your child the right way. If you need support or resources to try to help find those people, you can reach out to infoinspirend.org and we can help connect you to some possible resources that you may need. Well, Lynn, it has been an honor having you on the podcast. Is there anything else that you'd like to share with the listeners that we haven't already said?
[00:32:53] Speaker B: Jen is from New Jersey and it was great.
[00:32:57] Speaker A: Where are we going with this?
[00:32:58] Speaker B: It was a great day when she moved to the Houston Metroplex area, and we drive over 100 miles a day back and forth taking Bill to her program. We are just still so grateful each and every day that we have you here.
[00:33:16] Speaker A: Well, I thank you, Lynn. And just from a semantics perspective, is not technically my program, so Bill is not a client of mine. So this is not considered a testimony as far as our ethics board. But that's. But that's okay. Just need my professional colleagues. Yes, I did start the program that Bill is in now. Absolutely. He's my guy. He's my guy. So. But we really appreciate having you here. And as always, to all our listeners, please reach out if you have any needs that we can help you with. If you need help or resources, whether you're a parent, someone on the spectrum, a business or a community organization who want to know more or need help or want to share resources, please reach out to
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