[00:00:01] Speaker A: Welcome to Shining Through Inspired Voices of Autism with show host Jennifer Gensler. My name is Madilyn and I have autism. 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.
[00:00:25] Speaker B: Hey, 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 1 in 31 people, we need to get louder about this topic. 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.
[00:01:30] Speaker C: So let's get started.
[00:01:33] Speaker D: Hello, all.
[00:01:33] Speaker C: We are here today with a very special guest, Christine Biddle. And for all of your reference, the intro today's podcast was done by her very own daughter, Madilyn. And let me tell you, she was a natural on the mic. She got into the recording studio and just went to town, and we are so proud of her daughter, Madilyn. Madilyn is actually 13, and I've known Christine since 2019, when Maddie was part of our program a long time ago. So thank you for being here, Christine.
[00:02:01] Speaker D: Thank you for having me.
[00:02:02] Speaker B: Okay, so we invited Christine to be.
[00:02:04] Speaker C: Here today because not only is she a mom of a daughter with autism, but she's also a BCBA and practices as a BCBA at this point, she has definitely two points of reference and points of view to be able to bring to the table. So let's get started with some of our questions. So first, Christina, we're gonna talk to you as mom.
[00:02:22] Speaker B: Talk a little bit about when Maddie.
[00:02:24] Speaker C: Was diagnosed, how old she was, and what were some of the things you saw.
[00:02:27] Speaker D: She was born in 2012. She got her diagnosis in July of 2014.
I think something else that's unique to Madilyn is she has a twin brother who. First time mom, I don't really know what I'm doing. And as they kind of were developing, I didn't notice any real signs.
And I remember going to the doctor and them saying, well, you shouldn't compare. And I'm like, well, these two were actually in my stomach at the same time. You know, they say, never compare two kiddos together being siblings. You know, it was hard not to do that. And it was my mom who actually came to me and said, I think something might be going on. And I'm like, well, she responds to me. I'm her mom, and she loves me. And so I didn't really think anything of it, but that did prompt me to take her to the doctor. And they said, well, we can get her on the list to get assessed. And we immediately started and speech therapy. And that was kind of the beginning of how it started. And she got her official diagnosis. Like I said in July, the first thing that they told me was aba. And I said, I don't know what that is, but let's go find somewhere. And even back all those years ago, there's still a wait list. There was a lot out there, but it was. I wasn't sure which place to go to. When I called Spectacular Kids, someone answered the call and said, we can get her in immediately. And it turned out to be, like, the most perfect place for her to be at. And that was kind of the start of our journey.
[00:03:32] Speaker C: Her brother's neurotypical.
[00:03:33] Speaker D: He is.
[00:03:34] Speaker C: And so that's where you were able to sort of do the direct comparison.
[00:03:37] Speaker D: And it's funny because I actually say she's my easy kid kid, and he's my hard one because he's me as a child. And so it's just kind of funny.
[00:03:43] Speaker C: Back then. So that was around the age of two. So for. Back then, that was. That was pretty early. And that was really a testament to you all as parents and as grandma. Right, that. Because there wasn't that Automatic required assess MCHAD at age 2 and all of that. So you got her into ABA. Tell me about your first experiences with ABA.
[00:04:03] Speaker D: I learned a lot just through. Through Dana and through parent trainings. I think the thing I learned the most initially was communication and how important that is. And that's a lot of the reasons that she would engage in some of her behaviors was because she couldn't communicate with us what she wanted. So they really pushed that through. You know, even using A picture or pointing through gestures. And even though that was the thing as a mom that I thought of is like, I just want to know what's wrong. I just want to know what you want. I want to know what you need. And so Dana really pushed that with us initially. And, you know, she's still engaged in some pretty severe behaviors at times, but that was always in the forefront of my mind, is like, she. She can't communicate. That's the thing that we really pushed initially.
[00:04:37] Speaker C: Would she be considered a level one, two, or three autism?
[00:04:40] Speaker D: I would probably say she's a level two.
[00:04:41] Speaker C: Okay. Just as point of reference for the listeners listening to her intro, new parents out there, newly diagnosed, that are trying to figure out where their child fits in this as they hear about resources and things that people are doing. So I know you just mentioned about the parent training, so can you talk a little bit more about parent training, the impact it's had? Obviously it prompted you in some ways, right, because you became a bcba. But talk about your parent training early on, what that looked like and the importance of it. Sure.
[00:05:09] Speaker D: I think initially it was going just to the clinic to watch her do all of these amazing things. I remember seeing her, you know, like, cut a pretend piece of food, and I was like, oh, my gosh, that's so cool. Like, she couldn't do that before or just even something small like coming to a table. And even now, looking back, her following a receptive instruction of come here, turn around. I still use that today where I'm like, oh, my gosh. Like that tiny, itty bitty skill, that was the, you know, the very beginning, still serves her well today. So those little basic skills, that's something to celebrate and to remember. Like, you're gonna grow into that, and it's gonna continue to help you.
[00:05:40] Speaker C: What were probably some of your pain points early on, whether it was behaviors of her or you navigating therapies and systems or coming to terms with diagnosis.
[00:05:49] Speaker D: Getting her diagnosis was really hard because I think you have something planned out for your kids. Every parent does. And so hearing that, it's like, I don't know what that means, and what does this future look like for her? And is she ever gonna get married and is she gonna live with us forever? Was really hard. And I will say, you know, we started aba and about a year later, they said, well, let's do a re diagnosis, see how she's doing, making progress. Okay, great. Two years later, we went in after that initial diagnosis, literally the same day that I Got that diagnosis two years ago. And I'm like, oh, my gosh, I've seen this progress. We've been doing so great. Her transitioning, her behaviors are growing really well. And then we got an IDD diagnosis, too. And I was, like, devastated. Here I am thinking, like, we're doing great. She's killing it at aba. We're working really hard. And I was like, not again. Not something else. The same literal day, two days later for me. And something I would say to your listeners, too, is, like, when you go to aba, these. These people are taking care of your kid, and it's so hard to feel like you can't help. And that's how I felt initially. It was like, what am I going to do? And I'm trusting you with my baby. So when that second diagnosis came, of course I called my husband, called some family members, and I think probably the second or third person I called was Dana. And I said, can I talk to you? And I went to her office, and I'm like, what am I going to do? And she's like, it's okay. It's okay. That's not going to define who she is. That just means she's going to get more help. And so I would just really encourage the listeners and new parents and new diagnoses, like, it's going to be okay, and they're going to be hard days and good days and all that stuff, but you find your people and you find your tribe and just know, take it one day at a time.
[00:07:16] Speaker C: Excellent, excellent advice. And actually, that IDD diagnosis brings on a whole nother realm, probably for a whole different podcast. But 10 to 20 years ago, that was probably not preferable because there were ceilings and sort of plateaus and automatic assumptions, even, especially in public school.
But now, and especially as she comes into adolescence, having that ID DD diagnosis can actually help access more services. Right. But it doesn't have the same kind of, you know, obstacles and assumptions that it used to have. Right, right.
[00:07:48] Speaker D: I feel like I've said this before where you get a label, but for us, I just say you rise above the label. Like, that doesn't define anybody. And that's what my husband said to you. Just because she has autism. So what does that mean? Like, that's just. She's going to go above that and beyond it, and that's what she's done, and I'm really proud of her.
[00:08:04] Speaker C: Okay. I'm going to use that forever and forevermore as we rise above the label. I absolutely love that. Okay, so early on she was an aba and so she's been in ABA most of her. She's 13. Yeah. Right.
[00:08:16] Speaker D: Currently still receiving services we're doing in home right now.
[00:08:19] Speaker C: Okay.
[00:08:19] Speaker D: She did clinical for quite a long time. Transitioned in. Home was exciting and different and scary. I mean, it always is because it's your baby and you want to make sure you're doing the right thing. It has been really great because we've been able to work on things in the home, like, hey, guess what? You get to learn how to help do the laundry and the dishes and to clean your room and to work on leisure skills at home, which is just as important. So there has been a lot of really good things come out of that. Probably the one downside is she's by herself. And so the thing I loved about clinical is she's with her peers, she's able to do group activities and see some social interactions, all that good stuff that you can work on. And so we just really try to find other avenues for that. So, like she goes to a dance class, we do a cooking class. Like, she has a better social life than I do, which is great. I love that there's so many opportunities for her. The only downside for us is that.
[00:09:07] Speaker C: Well, and I know that's also a whole other topic as to when do you transition from clinic based aba? Because for a lot of our parents who did early intervention, it's scary to think of anything else. But we also need to help, when they're ready, move them on to whatever that next step is. Whether it's public school, whether it's private school, whether it's in home, whatever it is, it's hard and scary because you want to do right by her. Okay, so now as she's entering adolescence, what are some of the vital skills? I know earlier you mentioned things like even just those one step instructions, but as she's moving now into adolescence, what are some of those skills that you think are gonna be so vital for her in the world of independence, in the world of kind of moving into teenage and adulthood?
[00:09:48] Speaker D: Her independence, of her being able to advocate for herself. I mean, she does do that at home with us too. But if she's in an unfamiliar setting or a new setting or not with somebody who knows, is she gonna speak up for herself? Is she gonna advocate and say, I don't wanna do this? Because I do think in aba, especially when you're younger, it's like, okay, we gotta follow through and we have to do this. And so you get into that habit where you don't really know. Oh, I can say no. Oh, I can say, can I take a break? Can I take more time? And I think that's kind of one of the downsides. I know is a topic in ABA right now a lot. There's a fine line between both of, hey, we have to follow through versus that compliance piece. I don't want to be overly compliant. So just making sure she can advocate for herself and speak up.
[00:10:27] Speaker C: Autonomy and ABA do not need to be mutually exclusive. And I think there's misperceptions that they are. It's not. I mean, part of what we need to be teaching is that self advocacy, self self monitoring, independence, downtime. I mean, for our listeners. She's sitting here right now just hanging out, coloring and having a great old time. So programs like waiting, independent leisure activities, you know, all really important in life.
[00:10:51] Speaker D: She can color. Like, why is a leisure skill important? Because guess what? Mom needs to go make dinner and I can't entertain you. I need you to take a break. And so something invisible is that like, back in the day, we worked on her tolerating a five minute go play by yourself or play with blocks. And teaching. That is huge because guess what? Yeah, right, Exactly. Right now she's able to go and entertain herself for a very long time because she enjoys that activity.
[00:11:12] Speaker C: Absolutely. Okay, so I know this is a really hard question.
What do you think is next for your daughter? What do you want her to do next?
[00:11:20] Speaker D: Right now we're at a point in her life where I think school might be an option. Like, my job is to work myself out of a job. Like, ABA is not forever. And I have to remember that it's not. But it's a comfort, right? I trust people who have a good head on their shoulders, all that background. The next place we're looking is middle school because she'd be going into eighth grade and then high school. But I really feel like she's ready for that. I feel like she can communicate better if there was something going on, if.
[00:11:50] Speaker C: You knew that she consistently speak up for herself. Right. It makes her a little less vulnerable and that that's part of the issue. Okay, so now let's talk about you. Let's talk about why and when you chose to become a bcb.
[00:12:04] Speaker D: I remember going on the pickup line, picking up Madeline ABA and telling Dana, my current boss, actually, I said, I want to be you when I grow up.
You know, I'm like 35, and I'm like, can I be you when I grow? Because I've seen what Aba can do, and I've seen it change lives. It's changed ours. And so the opportunity to be able to do that for another family is. That's my why. That's why I want to do it, is because I've seen what it can do, and it works.
[00:12:27] Speaker C: How do you balance autism all day and autism all night?
[00:12:31] Speaker D: You know, I think as moms, just in general, you come home, and sometimes you're tired, and you go, am I gonna fight the fight today? But I'm also a firm believer of say what you mean and mean what you say. So if something's gonna happen, that goes for my son, too and goes for anybody. You have to be willing to stick to your guns. I don't know. I think as she's gotten older, and I do tell parents that sometimes is. Sometimes it's just a waiting game. Like, it's hard right now, and it's gonna get easier. And so even today, I was like, how was Madeline all those years? Like, feels like such a distant memory because we've made such progress.
[00:13:01] Speaker C: I don't think we do celebrate the wins and the victories enough as bcbas or as parents.
[00:13:05] Speaker D: Right.
[00:13:05] Speaker C: Even in the world of autism. And sometimes the joy is in the very small victories, and I don't know that we stop and celebrate those victories.
[00:13:12] Speaker D: That's huge. I got a message from, like, a parent today who was like, guess what? My daughter was able to read her ABCs. We got our first eye test today. And I was like, yeah, that's huge. You know, so I'm totally of the mindset of even if Madeline did something today, that was huge, I'm like, oh, my gosh. Like, she independently went over to somebody and said, hi, how are you? I'm like, that's. To me, that is huge. It is important to celebrate those small victories.
[00:13:33] Speaker C: Well, even today, just coming to record the podcast, I mean, just listening to her say those sentences and take. Do a couple takes and not get frustrated. I mean, all of the things I mean. Yes.
[00:13:44] Speaker D: And not to say that that still doesn't happen, though. I mean, even last week, she was just having a really rough day, so it's not all sunshine. And sometimes I think that's hard because you go maybe to somebody's Facebook page, and it looks like it's all, you know, wow, how are they doing it? They're killing it. And I'm like, no. I mean, there are days where we have. We're on the floor and we're not happy, and we're screaming and I'm like, tell me what's wrong? And she still sometimes can't tell me that. And so take a deep breath. Try again tomorrow. Do the best we can.
[00:14:10] Speaker C: That's absolutely true. Do you think becoming a BCBA has helped Maddie?
[00:14:15] Speaker D: I think it has. I understand a lot better. More of behavior in general. Like, there's usually something. There's your antecedent, and then there's your consequence. So what's going on in that moment that may started that triggered that behavior? Essentially, what can I do to help prevent that behavior from happening in the. In the future?
[00:14:31] Speaker C: But you have to be a BCBA to be able to not at all learn that. Yeah.
[00:14:34] Speaker D: It's crazy because I do some parent trainings, and it's, you know, for freshly diagnosed babies, newer babies, and they're like, well, I do this.
[00:14:41] Speaker C: This.
[00:14:41] Speaker D: And I'm like, oh, my God, like, you're killing it. And you didn't even know you were doing aba? Of, like, well, if this kiddo flops to the floor, then I'm just gonna ignore. I'm like, that's called attention extinction.
[00:14:49] Speaker C: You're doing really good.
[00:14:49] Speaker D: Because that mom knows, like, he's doing it for this reason. And so there's. I feel like a lot of times where we. We do ABA and we don't even know that we're doing it because ABA.
[00:14:58] Speaker C: Is about human behavior. It's not about autistic behavior.
[00:15:01] Speaker D: Exactly.
[00:15:01] Speaker C: Right. And so, again, why do we get paychecks? That's our reinforcement. I mean, there's all aspects of life that it's about human behavior. And I think sometimes also, that's where ABA gets the bad rap.
[00:15:11] Speaker D: Right.
[00:15:11] Speaker C: What advice would you give to a parent of a newly diagnosed child?
[00:15:15] Speaker D: Not every kiddo is the same. Everybody's going to be different. Everybody's going to have different goals, different highs, different lows. To take it one day at a time, to celebrate those small victories and just know that you're doing the best that you can.
[00:15:27] Speaker C: It's a long journey, right. It's about the marathon, not the sprint.
And then I think, you know, back to when I asked you the question about autism all day and all night, and you said, you know, today, am I going to fight the fight? Right. And I think it's also okay for these parents to hear. You don't have to fight the fight every day. Right. Like, you can take a break from being the therapist, and you can just be mom or dad.
[00:15:49] Speaker B: Right.
[00:15:49] Speaker C: And it's about quality of life. And I'm sure I can only Imagine that now you, as a bcba, you have so much more compassion and understanding for the parents and what they need to do and what's realistic data to take and realistic interventions for home.
[00:16:06] Speaker D: Absolutely.
[00:16:06] Speaker C: Is there anything else that you feel like we haven't talked about that you'd like to share with the listeners?
[00:16:12] Speaker D: We talked about kind of what's next for Madeline and that is because I think that that's an important component. There's so much that she's going to learn there and thrive. She is only 13, but even as a BCBA, you know, we start with those skills of like turn around, come here. It says receptive instructions of the little baby steps that are going to serve her in the future. But as a BCBA now having a 13 year old, I go, you know, we always need to be planning for their future, where it is that little thing that's going to continue on with their lives. I'm thinking of her future and what I want her to do next. After that, we started a nonprofit. It's called the Rise.
It's been around about a year. It's still kind of in its baby infancy stage, but it's a place where individuals with various disabilities get together and we create high quality products and we give them some social opportunities with their peers and also with the community. So all of these products that they make, we go and we do like a pop up and they get to go and they talk to the community and they go, wow. And I think something that blew my mind, which I think you'll laugh about too, is, you know, we create these products and we give them the spiel. Like everything you see here was created by individuals with disabilities and they did this, this and they go, well, what did they make? And again, it goes back to that, that label part, right? So just because I have a label that I'm autistic doesn't mean that I can't do right and I can't do high quality things. And so that's kind of our mission with the nonprofit is to say these kids are quite capable and can do beautiful things and to show like, hey, we're part of this community and we want you to see us and we want to see you and we want to create those connections for them.
[00:17:42] Speaker C: And that Rise community is here in the Kingwood humble area.
[00:17:44] Speaker D: It is. So we're working out of a church at the moment. So we meet one to two times a week to create those products and then we have some pop ups. I would love to have a coffee shop and A bakery and an artisan studio where we could have a day program that Madeline can go to. And it's like, it would be really exciting, right?
[00:18:03] Speaker C: Where can people find this community?
[00:18:05] Speaker D: The Rise communitytx.org is our website and if you just search for the Rise community on all the other things, that's where you'll find us.
[00:18:12] Speaker C: And are they accepting students right now or.
[00:18:16] Speaker D: We are in the process, yes. So right now we have eight artisans and we're working on our volunteer base because that's another part of, you know, we want to make sure the parents love to come because they get to see their kid. And they go, oh my gosh, like they could do that. And it's like, exactly. If you don't present the opportunity, then you won't know. And makes me think of cooking class. I had no idea Madeline liked to cook. But we went to Creativity show and went to a class and she's like, go away. Like, I got this. I'm like, oh. So until you present the opportunity, you're never gonna know what people can do.
[00:18:43] Speaker C: And so that's a great point about exposure. And I think sometimes we overthink and they're like, well, certainly they wouldn't like. And then all of a sudden they do. And it's incredible, right? And I think in the summer, a lot of these VBS's and one week long camps are great ways to expose our children to some of those things. Because you never know.
You know, there's a guru in the field, Peter Gerhardt, and he has wonderful stories about your green straws and finding your child. Their green straw. Can't emphasize that enough that you won't know until you expose them. And a certain camp might not go well, right? A one week camp might be a train wreck, but it doesn't mean you keep trying. You stop trying simple.
[00:19:20] Speaker D: Grandin, we just saw her recently and she said, high expectations with accommodations. And I said, that's what we're doing. I mean, that's exactly my thought is you have to have the high expectations and know they can do it and support them as they need it. They can do a lot of things.
[00:19:34] Speaker C: Great place to end. Christine and Madeline, thank you so much for being here. We love you being here and everything that you are giving back to the community. Christine, we totally appreciate. Thank you. If you need help or resources, whether you're a parent, someone on the spectrum.
[00:19:49] Speaker B: A business or a community organization who.
[00:19:51] Speaker C: Want to know more or need help.
[00:19:53] Speaker B: Or want to share resources, please reach.
[00:19:56] Speaker C: Out to
[email protected] thanks for joining us.
[00:20:01] Speaker A: On Shining through inspired Forces of Autism. If you joined this episode, be sure to subscribe, leave a review and share with others who want to celebrate new diversity. Until next time, keep shining.
[00:20:21] Speaker C: Sam.
