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How Can ABA Providers Build Stronger Relationships with Parents? · ABA Business Leaders

• speaker-0: Every dream that you had of motherhood at that point is is shattered. You are so vulnerable. What we knew of autism was brain man. Then you learn it's a spectrum disorder and there's and there's ebbing and flowing and all this other stuff, but at the very beginning you are lost. speaker-1: I always heard kind of the description like they're in their own world. They're not social. They won't connect with you. And I was terrified that I would never connect with my child. I remember thinking they will never understand this. speaker-0: Welcome to ABA Business Leaders brought to you by 3Pie Square, where we discuss topics on how to create and grow an ethical and sustainable ABA practice. speaker-2: Whether you're starting, scaling, or thinking about selling your business, we're here to share insights, stories, and strategies to help you on the journey. speaker-0: We owned a successful ABA practice for over ten years. speaker-2: Now we help other ABA business owners do the same without all the chaos. speaker-0: Stick around, you're in the right place. speaker-2: Hello, everyone. Welcome to ABA Business Leaders Podcast brought to you by Three Pie Squares. I'm April, and there is no Stephen today. It is just us ladies here. ⁓ with me I have Amanda and Melanie. They are both moms who ⁓ have children on the spectrum who have received ABA at some point in their life. They'll be ⁓ they'll they'll have an opportunity to tell you more about their individual stories here in a minute. ⁓ but in ⁓ kind of going along with our Mother's Day theme for the month, ⁓ we thought it would be great to hear from we've heard from our CEO moms. And so now we want to hear from moms that kind of represent the families that we support. So so welcome guys. Thank you. speaker-0: Thank you. speaker-2: ⁓ I don't know. who wants to go first to kinda introduce yourself and like a little tell us a little bit about your story. speaker-0: ⁓ April, you've known me for a long time. I'm Melanie Thurston. My daughter, Caitlin, is twenty-four years old. She has severe regressive autism. ⁓ when she was first diagnosed, she was ⁓ between a level two and a s she was moderate to severe. ⁓ of course she's twenty-four and so she was diagnosed at three and a half. Now she would probably be consider I would say she would be considered level three. We haven't had her reclassified. That sounds terrible to say it that way, but she, you know, she'll never leave home. She'll always n she will she requires maximum assistance with, you know, being able to get anywhere. She can, she can do some of her own self-care. But when it comes to like putting together food and meds and stuff like that, she's she's very dependent on us. So she would be considered based on what the classifications are now, she would be considered a level three. our ABA therapy was obviously many years ago, but I still remember some of the experiences very vividly. ⁓ I actually did write a book about our journey. It's called Mom A Mater, My Life as an Autism Mom. And yes, I do have the book to hold up and show. speaker-2: Melanie, I'm so glad you brought that up because I I was I meant to tell you, make sure you have your book with you. So if you haven't already heard, ⁓ I wish I knew the episode number, but go back and look and look for Melanie Thurston in our ABA business leaders podcast. And she actually I did an interview with her ⁓ a while back and she told us all about like her book and and that experience. So I urge you to A, go and listen to that if you haven't already, and B like go get the book because it's amazing. speaker-0: ⁓ thank you. It is on Amazon, just a shout out for the link there. So to make life easier, it is on Amazon. So you can order it that one. speaker-2: We will have the the the link in the show notes as well. So it'll be easy just to scroll down there and click the link. All right. Amanda, tell us a little bit about your story. speaker-1: So I'm also an autism mom. I ⁓ have a 19-year-old son was diagnosed with autism at the age of three, who's not or considered nonverbal until four. What we started off with was we started off with the standard OT and speech before he was diagnosed, and then we worked into ⁓ there were no ABA services that you could get. So I found out about ABA through his developmental pediatrician and ⁓ was sent to a doctoral level, BCBA for for training, just to work with my son to start off with. He actually started receiving, so I was his first behavioral therapist. ⁓ and I used to work with him for like 30, 40 hours a week myself. We would run the ABLEDs, and then I would meet with this BCBAD. Once a week. So that's how we started ⁓ with ABA. And later in his life, we actually started getting ABA services for different things instead of early intervention. It was for learning math skills, reading, logic and reasoning, social skills, those sorts of things. I am also a BCBA, I became a BCBA because I love running the ABLE so much with him. It was so much fun that I went back to school. I was an artist, I was a painter. I went back to school, became a BCBA, and I've just recently opened my own clinic about a year ago. ⁓ wow. So ⁓ but I identify primarily as a parent in in all the things I do. my my son is a joy, he's hilarious. I was told when he started speech that he probably would never speak. ⁓ and not not to expect that because he was so He he he engaged in a lot of self stimulatory behaviors and all these things that ⁓ made it very difficult for ⁓ speech pathologist to work with him. But now he's conversational. He's going to go to college. He's starting the end of this month, he's gonna start in the summer. but that took a lot of hard work, but he's he's he's such a charming, lovely person. speaker-2: That's awesome. That intro. Yeah. Look at you. Both of you like women are just like accomplished and have done so much through like lots of hard work. Lots and lots and lots of hard work sitting here with us today. and I think that this is this is gonna be, I'm excited about this conversation. I think it's ⁓ those of you who are listening, right, are typ are, you know, typically business leaders and decision makers. ⁓ the business owners within the field and really hearing a parent's perspective is super important and helping us to shape and guide our our practice, right? ⁓ yes, we all get into this saying, ⁓ we want to provide quality ABA. We want to do we we get into this because we want to help people, we want to help families. ⁓ but I'll be honest, there's there's a little bit of ⁓ I don't know what to even call it, a little bit of negative negativity around a negative negative talk, maybe around parents sometimes, right? ⁓ frustration of ⁓ if mom would just follow through, or you know, ⁓ I wish ⁓ I wish the parents would do XYZ. And so in in my career over the decades, I that's been a big ⁓ focus of mine is like are are parents, right? Like parents are people too. Like and you imagine, you know, having your dreams and you know, welcoming this baby into your lives, and you have all these dreams for your child, and then that's different than what you expected. And there's a lot of grief there. There's ⁓ then we'll we'll dig into all of this here as we talk, but there's a lot there, but ultimately these are people's babies that we're working with, right? And and we need to include parents as part of our team for the best ⁓ outcomes for the individuals that we provide services for. But I also think it's really important here that we have a varia ⁓ wide ⁓ difference here on spectrum, right? With with both of your your children, right? ⁓ with with Melanie's ⁓ with sweet Caitlin who I had the opportunity to work with many years ago. ⁓ And you know, who will be living at home for the rest of her life, right? And then we have Amanda's son who's going to college this year. And so that really that is a that that just helps to paint that picture of the spectrum that we're working with, right? ⁓ and sometimes as providers, we're working with these children when they're little guys, when they're two, three, four, five years old. And sometimes we're working with them when they're teenagers and young adults, right? So it I think that also adds into the complexity of how we handle and handle ⁓ that's not the right word, how we work together with ⁓ with parents and and handle those situations that come up and how we communicate, how we ⁓ support them and and all of that that goes into it. So ⁓ I'm gonna just jump in with a big question here. I I wanna I wanna look at how we can help. How we can help paint this picture of what it's like to be grieving as a parent, you know, as you get a diagnosis. ⁓ because a lot of the the children that we work with, right, especially those of us who are in early intervention when we ⁓ are coming to, you know, we might be their first ABA experience or first provider. They may have just gotten ⁓ a diagnosis, or they're even maybe they're still in that process of trying to get a diagnosis. And ⁓ and there's a there's a lot there as we're meeting as we're sitting down and meeting with these parents for the first time as they're like their life has their everything shook for them, right? And they're not quite sure what to expect and there's some overwhelm and some grief. I don't know if you go I know this is deep. I know this is is is a really hard thing to talk about, but I didn't know if you got to be willing to share like what that feels like as a parent. speaker-1: Yeah. for me, I can remember not sleeping for about a week when I really realized that there was something very different about my child and that ⁓ probably because he'd started getting speech well before he got his diagnosis, that probably wasn't just a speech delay. And ⁓ and my hair started falling out. And then you you realize that you're not able to connect with other people very well because other people who have kids will be able to tell you what their kids are interested in. And I you know, I just realized that I couldn't really. ⁓ my son was interested in his fingers. He liked he liked his toes. And ⁓ I remember feeling so isolated and I felt sick because I did not know what to expect. I didn't know what his life would look like. I didn't know if I was up to the task of being able to raise someone with a disability. So I think it's not knowing what to expect. And back when Andrew was diagnosed, autism wasn't really discussed much. speaker-0: Yeah, I can definitely second that. ⁓ there was no one. We we knew not one person that had an aut had a a child with autism. And our story is a little bit different. ⁓ Caitlin was neurotypical, you know, we use the terms neurotypical, neurodivergent, but she met all of her milestones until she hit 12 months. And this is, you know, my story. I always kind of brace myself when I when I tell this story, but she got her vaccines that day. She got the MMR and she was vomiting and lethargic as soon as like within 30 minutes, once we got home from the doctor's office. ⁓ we called the doctor and ⁓ this is no big deal. This happens sometimes. We got brushed off. And then later that night she had a fever. It was 105 is the highest that our thermometer went to. I was not going to use a rectal thermometer to double check. Let's see if it's any higher. She was already projectile vomiting and, you know, we got again called the doctor and the doctor said, ⁓ you know, this happens sometimes, cooler down, tap and bath, blah, blah, blah. And it was within about two, three months after that. And my husband, Frankie is April, you know my husband, Frank, as well. ⁓ but so our story is a little different. We she was meeting Oliver Milestone. She was walking. She was she was chatting a little bit, you know, and then all of a sudden she wasn't. and I look back at a time now and number one, I kicked myself for not being more vigilant, for not for I guess not wanting to see what I was seeing. ⁓ you know, I'm a nurse, I'm a C V IC nurse, I'm not a pediatric nurse. But because of my background, I just didn't want to see what was right in front of me. And Frankie was the one who was saying there's something that's there's something wrong, there's something wrong. And yes, we did use the term wrong, but it wasn't until about 18 months. That I started really seeing it. And then by the time Erica, my second child, was born, they're 20 months apart. I look back at the pictures now and I think, how in the world did I gloss this over? But d I just didn't want to see it. I didn't want to see it. ⁓ that was the biggest thing with me, was just this huge state of denial. But then when I really sat down and looked at her symptoms in my nursing book, ⁓ I remember just sitting there and just weeping. speaker-2: Peace. speaker-0: weeping, heartbroken, knowing knowing what was going on, knowing a hundred percent for sure. And this and her that meeting with the doctor went a little after she turned three. And I put it in Caitlin's book, but that the doctor stay sitting there after I had repeated after we had repeatedly come to and said, There's something going wrong. There's something on. Can you can you just take a look at Caitlin? Can you take another look? And 'cause we kept bringing the concerns and she kept blowing us off and blowing us off. And I remember that doctor's vote appointment so vividly when she said, Well, she has a lot of signs of autism, but I'm sure you knew that. And I just it is only by the grace of Almighty God that I stayed in that chair. Because if I'd been able to get up, I'm sure it would have been a very different picture. I would still be in prison, orange jumpsuit, whole nine yards, all that. But the the sense of the sense of loss, the sense of loneliness. the sense of, you know, at like like you were saying, April, every every dream that you had of motherhood at that point is is shattered. And you are so you are so vulnerable. You know, and people would say things and, you know, Amanda, I know you can probably speak to the same experience. People would say things and, you know, they're trying to be kind. They are. They they're trying to be kind. And the but the things that they would say, you're like, ⁓ my sweet Rosa Sharon, did you did you really just say that? Did that come out your mouth trying to be trying to be comforting. But ⁓ we were just alone. We were alone. it is it is incredibly isolated. And it wasn't like we didn't have anyone I mean we were all just clueless. I mean when Caitlin was diagnosed, I've looked at back at the year, her the diagnosis rate of autism when she was diagnosed, she was three and a half, so it would have been two thousand five ish. ⁓ was w about one in two hundred. So You know, and what we knew of autism was Rain Man. I mean, honestly, that was that was what we thought of is and that's what we knew. That's what we that's w that that was our starting point. And she didn't, of course, act like Rain Man, you know. And then you learn it's a spectrum disorder and there's and there's ebbing and flowing and all this other stuff. But at the very beginning, you are you are lost. I mean, you are lost. speaker-1: Yeah. And for me, I always heard kind of the description like they're in their own world. They're not social. They won't connect with you. And I was terrified that I would never connect with my child. Like we had started this quarter connect collection for him for the states quarters, remember those? And my mother had started those for him. She started for every single grandchild she had. And I remember the feelings, the thoughts you have staring at the collection and thinking, he will never understand this. speaker-0: Mm-hmm. speaker-1: Look at my anyway. I was so upset over the queer collection. It's it's it's I thought he was going to live kind of parallel to me, parallel to the world and never be a part of it. And that was what was terrifying. speaker-0: We just didn't we just didn't know. And of course it was you know, we started ABA therapy. We started actually in home therapy. It wasn't formal ABA, but we had early interventionalists in before she was even diagnosed. Because when you know, when our doctor actually did start to pay attention, Halalia, we actually did start with some home therapy. We got in with our D DSN board. And we started with speech therapy, with some occupational therapy in the home. ⁓ you know, she was just classified as ⁓ a speech delay at that point while we were waiting to get the actual diagnosis. so we at least did start with some things before she was formally diagnosed at three and a half. and I'm very, very thankful for that. But it was it was in the home and I I can't say enough for the early interventionalists who came in. This this is not ⁓ you know, I'm a cardiac nurse. Give me all things complex, part, cardiac, all that other good stuff. I will, I will roll with that all day long. That's my comfort zone. ⁓ a child who was able to talk and suddenly couldn't talk is not at all my comfort zone. And, you know, and and it was also at a time, unfortunately, and this is another big thing too. Life doesn't stop just because autism is there. ⁓ you know, this is another thing I've that I've that I've told my patients at at work and their families is life doesn't stop just because someone's in the hospital. Life doesn't stop because you get a diagnosis. Everything else goes on. And whatever else is also going on in the background is is there too. I there were the only really bad experience we had with ABA was probably during one of the most tragic times that That I experienced was the death of my mom. And it was not a pretty death at all. It was she died in in a house fire. I had to deal with all that while I was going to work, while we were doing ABA therapy. And it just life doesn't stop. It's just kind of relentless that way. No matter what. You still have to do the laundry, you have to, you have to cook, you have to clean. If you have other children, you have to take care of the children. You have to, if you have pets, you have to take care of the pets. You have to deal with you know, any other emergencies that come up. Everything has to still be handled. It just all has to be, it all has to be dealt with. It's just, you know, so I don't know. It it's kind of hard to describe the the overwhelming feeling too. And even when we started therapy, even though now we're like, okay, we're working alongside this therapist to some degree, we have some help. We have someone to help guide us. Cause we were we just were absolutely clueless. I'm just thankful that we had services within a couple months of the doctor paying attention to us. that we at least had something to start with. We at least had some speech in it and we could at we could at least begin the process of seeing what we could do to help Caitlin. Hey April, you remember that time we forgot to do benefit checks and that client switched insurance companies? speaker-2: Yes. We lost like $20,000. That was brutal. I don't want to talk about it. speaker-0: Honestly, that was one of the most frustrating parts of running to practice. Just trying to keep up with benefit checks, copays, prior authorizations. It was a full-time job. speaker-2: And if you miss even one detail, it can cost you thousands. speaker-0: What if I told you that somebody can handle all of that for you? Run benefit checks, track eligibility, manage prior authorizations, so you could confidently bill and stop wasting your time in pay reportals. speaker-2: I would say please sign me up now and where were you ten years ago? Yes. speaker-0: That's exactly what Silma does. Their platform automates your entire upfront insurance workflow. A benefits check done in under 30 seconds. Tri care prior off under three minutes. That's hours of admin work saved every single week. speaker-2: Sona is already working in 48 states supporting over 50,000 patients and they're rated number one for prior OS on G2. If you're ready to stop chasing paperwork and get time back to focus on your staff and clients, go to Sonahealth.com or click the link in our show notes. speaker-0: Be sure to mention 3Pi to get an extended free pilot and special pricing just for our listeners. speaker-2: So I mean, you both are talking about, you know, feeling feeling isolated and that the whole situation of feeling isolated. and life still goes on and you have all of these things ⁓ going on. Even, you know, and and I hate that that all of that was going on for you, Melanie, but that does paint a picture of like that can that that life can be ⁓ what's happening alongside of ABA. And it could just be a normal day where you have to get your other kids off to sports and, you know, cook supper and and and do laundry and you know, so so they're again the whole spectrum, right? So what what would your advice be to ABA providers along the lines of communication? What would what would good communication look like? speaker-1: Used ABA a slightly different way. ⁓ so we we serve we received some sources in school. And one of the first things I think of is that our ABA sources that received through the school system were not great. And the first thing I would like for BCBAs to consider when you're working with a family is even if you feel like it's the parents' fault, that whatever's going on with the program is the parents' fault, do not put that in writing and don't tell the parent, even if you feel that that's the parent's fault. Because if there is a disconnect between the parent and the therapist and the child, that may be a big function of how the therapist is putting together the program. Also, it's depressing. I've seen this in a lot of treatment plans that I've seen other BCPAs write over time where there's this clause that it puts everything on the shoulder to the parents and basically shames you a little bit in the treatment plan. Don't ever do that. Even if it may feel real, don't do it. It's not the parents' fault. What we need to do, if it seems like there is drift, if the parents aren't getting it, that means there's a communication issue. Maybe you're not aligning with their values. Maybe you didn't listen to what the parent actually wanted from the program. Maybe you're not aligning with the client themselves. Maybe you're not checking for assent and you're not and you don't know enough about the client because you haven't thoroughly gotten to know the parent. who knows the child better, but the parent's the expert. And sometimes when you ask things of the parent, and I love how you brought up earlier, ⁓ you know, the the it's the par when we look for ⁓ as BCVAs, you know, when we have hard feelings towards the parents because we think they haven't followed our instructions and those sorts things. Oftentimes we want to be really polite to our therapists and say, yes, of course, thank you. But you may be asking for something that's really outside of what we could possibly do. Because taking your child out in public more often sounds great but it can be terrifying. speaker-2: I only laugh because like I y you know, like I said, like I this was a big passion point of mine even before I was a parent was how to support parents as people too. Right. Yeah. ⁓ but then when I became a mom myself, I was like, ⁓ holy moly. Like and especially like my child's not hasn't always been an easy child either. And so it's like ⁓ I remember very particular like I think he was, I don't, I don't even know how old he was. It was one of many tantrums and and meltdowns and whatever that we've dealt with throughout his 11 years. But I was thinking to myself, huh, okay. Yeah, this is a little taste of what it has felt like for all of the, you know, cases that I've worked with over the years, right? And I one was did feel a little gratitude that I helped work with parents to meet them whether at the best that I could. ⁓ and then also was like, Okay, I'm gonna do everything I can to help clinicians to be able to meet parents where they're at better because Yes. Yeah. Okay, so just ignore that tantrum. Just ignore it. Just a child screaming. speaker-1: Yeah, well. speaker-0: Take him out in public anyway. speaker-1: In my house 'cause that's not gonna work. speaker-0: Yeah. I mean, just that and I don't think that was anything you know, Caitlin was so I'm trying to remember exactly how she was when when you were working with her, April, but you know, Caitlin was so profound ⁓ with her t tantrums and her meltdowns. And you know, we had to put her on meds and ⁓ I struggled with that decision of putting on meds, ⁓ 'cause of ⁓ my family history and my husband's family history and there's addiction and, you know, All that other stuff goes in there. So that all that all plays into it as well. But I think if someone had talked about let's take her out for a public outing, ⁓ which he was early in her ABA journey, I don't know if I would have laughed, cried I don't know what I would have done. I mean the tantrums, man, they were legendary. I remember literally firemen carrying that child out of Walmart more than one time. Cause it was just like it's just not it's just not worth it. It's not worth it sometimes. It's just not worth It's not worth being stared at. It's not worth, you know, hearing someone, you know, clock in the back and you make a little clocking noise in the background or ⁓ it it's just not it's not worth it's not worth the the fight. I mean, sometimes it's just not worth the fight. And especially in those early stages when you don't know how to help your child regulate themselves. Like you don't know. You don't even know what their triggers are, maybe. You don't know what's what's causing it. I mean, you know, ⁓ W our goals with when we were doing ABA therapy were very small, were very realistic for her. And ⁓ I mean, I would say overall, honestly, I'd say 95% of our ABA experience was good. really truly, it was good. And I know not everyone can say the same thing. We did have one we had a couple of bad experiences, but it's it's it was not It wasn't even I wouldn't even say it was directly related to the ABA. It was just secondary to some of the some of the things that were that were going on with life. But when it comes to that, what I will say is again, remember that we still have other stuff that's going on. We still are dealing with whatever whatever else is going on. I and I remember very vividly always trying on the front side early on in the ABA journey, going, Okay, we've got to clean the house. We've got to make sure the house is clean, because I didn't want to be judged. I didn't want someone to walk in and say, ⁓ my gosh, our house is dirty. ⁓ and honestly, that was actually what ended up happening later on. As we got further along in the ABA journey, we kind of relaxed a little bit. We're like, you know what, this is just life. This is where we are. And that was actually one of the things that we found out that happened was we were it was it was said that, ⁓ you know, their houses, they always have dishes in the sink and stuff like that. And that was yeah, that was one of the things that was that was mentioned. ⁓ you can't I I don't I don't know. I don't know how to like how do you how do you process that when you feel like it was someone that you trusted that's taking care of your child and you found out they've been ⁓ you know, making nasty comments about your house behind their back. ⁓ speaker-1: ⁓ they'd be out of there. speaker-0: Well, they w they were already on their way out and we didn't realize that that was happening until the next therapist came in and they and very innocently said, this isn't what I expected and you could tell it was really off the cuff when she said it and I said, Well, what do you what do you mean? And she said it was just commented that the that this house that the house is always you know, that the house is always kind of un not unclean, but cluttered or whatever, that you know, felt like there was always stuff going on. I am a night shift nurse. I've been a night shift nurse for almost 29 years. ⁓ I've done nights for ever since I started at the hospital on that. and when you're in a situation, I'm I'm I'm been the breadwinner for the past 29 years. And night shift was the schedule that actually worked out better for us because I felt like I was able to see my kids more before I got before I went to work. ⁓ that I had a little bit more time with the kids. But unfortunately, when you've got someone who's working night shift and you're trying to basically also now we're doing 40 hours of ABA therapy a week in the home. And then we're trying to keep up with a with another child and keeping up with everything else. ⁓ you know, how how do you manage to do it all? God bless my husband, really truly, God bless my husband that he did not I don't know how he didn't lose I don't I honestly don't know how he did not lose his mind over the over the years with all this mess. But speaker-2: Yeah. So I think Amanda, we we will add that to the list of things to not say. Do not say that it's the parents' fault, right? Or allude to that in any way. Do not comment about the cleanliness or messiness of a home. so ⁓ you know, to build on that, like what what advice do you have, Amanda, as far as like ⁓ some some maybe even some more what not to do's or what to do instead, right? What how how can we show up and and show that ⁓ Show that the parents are safe and you know and can feel heard and respected and included because I really think those are the big pieces that that make a great theme for the child. ⁓ it is if if the parent is part of the team. speaker-1: They're the expert. I mean, just a really good interview and the interview process is ongoing because it's going to change over time. What the people need, what the learner needs, it changes over time, the environment in the house, what's going on with the family, it changes over time. Keep that open. but ask the parent if you notice that something's too cluttered in the home for a specific session or something like that, you could always. Or I would just ask the parent if they would be interested in just one designated therapy area and not mention anything else and tell them what you would like in the therapy area. I would like a table, two chairs, we'll have our stuff in a box right here and just so they don't get distracted. But I would never I I cannot imagine that ⁓ any RBT or any therapist or B C B A like making any negative comments about a a messy house. Everybody's house gets messy and it's cruel. Because you've got so much on your shoulder, your only job there is to provide a service for this child and for the family. That's it. So if we can't if we can't build everyone up so that they can stand to go forward, what's the point of us coming in? I like for parents to feel ⁓ that they're in control because they are, because when the therapist leaves their life, the parents are still with their child. If I can't fulfill what the parents need. Then we have to resolve that because it's not about me. It it will never be about me. It's not even about ABA therapy. And for the most part, most of my experiences with ABA has been amazing. It turned my life around. It gave me purpose. It allowed me to connect with my child, which is all that I wanted. And but I hand chose my BCBAs. And and I chose my B C BAs for specific things like teaching my child how to read. We went through a learning lab. for reading and did fluency and teaching my child logic and reasoning, these things and they would assess and and but they there was always a dialogue with me. And I don't know if it was because I was a BCBA, but I think these people really respected parents what we wanted to see. What were our goals and if something wasn't working, what we could do differently. But you do feel pressure as a parent, even with a really good therapist to agree to stuff sometimes when it's not going to work at all. So being able to read that figure out as a therapist, is this parent just going along with it because I'm bulldozing over them? And I I I do a lot of assent-based interventions. So I look for signs of withdrawal in my clients, but also with the parents. Like are they just, you know, have the have has their demeanor changed? Are they still comfortable? And do they feel free to contact me and tell me? Because if people don't feel free to talk to me about what their concerns are, that's on me. I didn't make them feel like they were ⁓ welcome to. So that's really important as a therapist, as a parent, I always hop in and and and whenever I can, I let people know what works, what couldn't work. But I've been very lucky in the the behavior analysts that I have chosen. And one of the first ones ⁓ I worked with when Andrew was in eighth grade, it was during COVID. It was the best opportunity for us because we homeschooled and I contacted ⁓ BCBA that was really well known for ⁓ tutoring. And she did a lot of precision teaching and she started training us on it. That was where the real concept of ascent came up. And I loved that. I absolutely it opened my world and and made my child much happier. Even as a BCBA, I didn't know how to make him as happy as when I could ⁓ gauge whether or not he was buying in. speaker-2: Okay, so if you're a B C B A and you're having that initial interview, but also the ongoing, the ongoing relationship as you're communicating back and forth, as you're listening, as you're asking questions, what are some questions to ask that would help understand a family's ⁓ a family's values, a family's culture? Because even if you have the even if you walk into a family's home and and you know, we're kind of really talking about in-home here, but it's it's same same with a clinic, right? Because it there's a different set of i issues and barriers and skill sets needed for a clinic too, because then it's like you how do you bridge that gap between home and s and and the clinic too? There's that part too, right? ⁓ well, this is what we do at the clinic, and then you're on your own at home, right? That there are some those barriers that we see sometimes. But but even if we come into a home thinking that we we have a good idea of what the culture is and the family values are and what we think ⁓ what we think the values should be of the family and what we think that the culture should be within the family. What are some questions that we can ask to help us to be curious and help keep us grounded and making sure that we are including that we are really focusing around the family's unit, the family unit itself. speaker-1: ⁓ so a behavior analyst that worked with ⁓ Andrew a few years ago gave me a really great resource, which was Israel Gold Diamond has ⁓ questionnaire for parents. Just it's all guided, it's it it guides you through the questions you need to ask parents. And one that really sticks out to me is ⁓ finding out what kind of things that the parents like to do as a family. What things does the family like to do, and how can we tie in goals for the child with what They are interested in. So the child can be part of the family. And then you'll have better buy-in with the parents, and the child gets to, you know, connect with the family and those sorts of things. But that that parent questionnaire is really helpful. It's a it's a guided interview. You get the parents to say, think about what ⁓ what would a really good outcome for this be for you. Can you think about it? And you can tell it's hard to say on the spot, so just really think about it. Think about it, come back to me. I wanna know. And it's gonna change over time. Also getting the parents to write down when things are going well and what's going on, kind of journal. ⁓ that's also helpful if the parents wanna do it. But my biggest thing is I like to come in and find out what they're interested in, not just for their child, but in life in general. What is what is what are their interests, what what are their goals as a family. speaker-0: And my perspective my perspective on this is now again our therapy, our ABA therapy was twenty ish years ago. And we we were never asked questions like that. Well, like what do we want what do we want to do as a family? And I don't think that that's anything against the the therapists we had. ⁓ I mean, you the people that we had by and large were were wonderful. But I think that was something new that came along as is that inclusiveness and asking the parents what their goals were. ⁓ I mean, I think if you had asked us at that moment, what are your goals, we would have been like, ⁓ well, we don't want her to hurt herself. I mean, that would have been probably the biggest goal we had. Yeah. That would that would have been our goal. But we, you know, but that was again, it wasn't it wasn't a question that was asked at that time. So I think that evolution of now we're starting to talk to the parents more. But one thing that we actually Specifically asked our therapists because my first two kids are 20 months apart. They're very close together in age. We were starting to see behavioral issues with Erica. And we were starting to see kind of jealousy issues because Erica, as you know, a toddler is thinking, well, she's got someone coming to play with her 40 hours a week who's playing with me. And it wasn't that we weren't trying to include Erica in at all, but what we ended up talking to the therapists about was. Hey, can you pull Erica in on a couple of these things and include her and make her and show her a little bit of special attention at along with it? And we didn't do that probably, it was probably over six months in before we saw what was happening with with her. And that was a huge thing for us and for her that, you know, here she is, this toddler going, okay, she's got You know, Caitlin has somebody coming and playing with her forty hours a week and you know, they're all I bring in a big bag of toys and you know, and and you know, and more time was spent in there was a lot of functional stuff. There was, you know, teaching Caitlin hot and cold and and then working with speaker-2: Bringing a big bag of toys, right? speaker-0: working with you know, trying to do fine motor skills, trying to do some of that. W ours was ended up being very, very we had to start really, really basic and build our way up in a in a big way. ⁓ but we we asked them, can you please include Erica? And they and they very happily did so once we once we were able to see what was happening. So I think that's a huge thing too is You know, yeah, we have to work with the you guys have to work with the parents and we have to work with our goals. And sometimes, honestly, I'll be honest with you, sometimes we don't have any kind of set goal. Is just maybe you know, I don't know where to begin. I mean, I I was that parent who was like, I have no idea where to start with this. This is a totally brand new world. I was out in left field, and even though I was trying to do some research, ⁓ it was still really out in left field with it. And honestly, I still feel like I'm some kind of out in left field with it. But ⁓ But that was a big thing was including was including our other was including our other child. And that was for for her that was that was huge. We started to see changes in Erica's behavior when she began to be included. we were not seeing as many of the temp the tantrums that she was she was starting to because unfortunately she was learning. She was actually learning some of these behaviors from Caitlin because she saw that we she that Caitlin got a response from those behaviors. And so she started to pick up on some of those, on some of those negative, what we would consider negative behaviors. I mean, nobody wants to have their child throw tantrums to get their way. I mean, nobody wants that. ⁓ so and Eric Caitlin was not doing that. Her tantrums were stemming from not being able to handle her environment, from not being able to not being able to ⁓ what wasn't processing white noise, what was what was the source. As she got older, yeah, she had some legitimate I want my way kind of stuff. But when she was younger, it was not that. It was she was just in full neurologic overload, you know. But being able to include Erica was was an enormous was an enormous thing. speaker-2: Yeah, I'm glad you brought that up because in being, I mean, because the siblings are very much part of the family too. what what would you say? are there any specific relationship building activities? I I'm not suggesting like ⁓ you know, trust falls with the family or anything like that, but like are there any kind of relationship building activities or how to include the parent? as part of the process as much as they have the capacity for. Cause here we also have two very different stories, right? Amanda, you're like, all right, I'm gonna learn how to be a behavioral therapist and I'm gonna get down and do the work with him 30, 40 hours a week. And Melanie, you're like, man, I'm a nurse working night shifts. I'm just I'm I'm making the money for our family. And my husband's keeping things together. And they're, you know, I'm ⁓ from this so many decades ago, gosh, like forever ago. ⁓ but but like I I think I remember you like ⁓ needing to sleep during sessions, right? You know, like sleep during the day when sessions were going on, right? And so yeah. So how do you how so first of all, no judgment. Like we as clinicians to come in and look at this as just different stories and different families cultures and no judgment of one mom is better than the other mom or which we tend to kind of Kind get in that spot sometimes, right? ⁓ but but what kind of relationship building can we do alongside of the family and the child and the the parents and the siblings and to be able to help people feel included? Is there anything beyond just conversation? ⁓ I guess is what I'm what I'm kind of going for here. speaker-1: So yeah, I wanna you run into it like ⁓ because it is it's it's difficult because you become kind of like a pseudotherapist for the parents because they're going through a lot of trauma. It's really difficult. It's really important to listen. Because if if someone cuts you off and says, Well that's not my that's not my role, it's hurtful. Yeah. Because these people are already isolated. So you listen and then you can ask questions like have you ⁓ like ⁓ say if a child ⁓ won't put on their clothes. Put on their clothes, say it's nude the entire day at home. They can't have people come over. Then I'll listen to that. And it's gotta be really tough. And then I say, Well, do you ever do do you ever, because I know you're a single parent, do ever take your child to the store? And they say, Yes. And like, do they put their clothes on then? Yes. I said, Okay, we know, we know what they'll put their clothes on for. There must be something about this that they enjoy. And we break things down and then we come up with ⁓ you know if they want to take in the store how we can create those sorts of opportunities ⁓ if they work looking nonlinearly like what are all the different variables in the home in the family that can really work for the child so kind of pulling out those times when things work out then then that's how I can focus it back being kind of behavior analytic but also ⁓ another thing that I liked And I I I pull from my experiences that I enjoyed ⁓ with with my my child. Is whenever in a program, if we could work on motor skills, and I learned this from a behavior analyst that was working with ⁓ my son, and I had no idea he was so delayed in his motor skills until the ⁓ another behavior analyst had noticed his handwriting. She was working with him for math. And she's like, well, his handwriting theory off. So we went to another behavior analyst that understood motor skills. Well, let me tell you, it opens up the world. Anybody you can build a relationship with someone if you work on motor skills systematically. And that I loved it. So what I've done is we'll whenever we can, we'll incorporate this thing called the big six plus six motor skills kind of things and just little things you you can be that that the child enjoys. the the parents could work just for a few minutes a day with their child if they want to. Little things like ⁓ this this is from the behavior analysts that that work with Andrew and then I started using it with ⁓ other clients have two boxes working on reach, grab placing releasing and doing that with the child, reaching for something, grabbing it, placing it, releasing it, and then you're working on these different goals that are gonna work with handwriting, dressing, all these things. But while you're doing it, the child starts to pay attention to the parent. And you and also another thing that I would do, and this is probably too wordy, is make sure we have our signals are really clear. So when we're working together with our kid, we have a specific signal where we're about to start and when it's over. And it's brief kind of loops where we play, the work, we play, the work. But always ever since this one behavior analysis work with my son, I like to start with motor skills. is super fun and usually even a very challenging child gets into it and they enjoy it. But that's a good way to build connections with your child and then you can move from there to do more complex things. speaker-2: Yeah, thank you. Thank you for sharing that. And do you have anything to add on on that note, Melanie? speaker-0: I don't know. It was it was like I said, it was a really, really hard time. And there was in our situation, in our situation, because the complexities with my family and all that was going on at the time, there was a lot that I didn't say that ⁓ I didn't talk about what was going on with my mom. I didn't talk about ⁓ I was pretty much gone the entire month of July in 2007. I was in a in many ways, I was I was kind of gone. ⁓ you know, that was when she was at her and of course that was when we were having 40 hours of ABA a week during the summer. And I just remember so much trying to not make just hold that in and deal with it myself and not put that as part of the therapy as because it wasn't Caitlin's it wasn't Caitlin's problem. ⁓ I don't know if that makes sense. speaker-2: Yeah, you are kind of compartmentalizing, right? And maybe in some ways you were like she's taken care of. Yeah. speaker-0: Yeah. And and so I know, I know that month I I I really did I completely disconnect. It was really the whole month of July because we I ended up having to fly up to Pennsylvania. I knew that something was really wrong with my mom. And ⁓ and then I got back and the Friday I got back Thursday night, never forget this, and then Friday morning the next day, and this is when probably the most hurtful thing happened with our ABA journey. ⁓ I remember it was nine o'clock in the morning. I was trying to fold some laundry, just trying to help Frankie get caught up because I'd been gone for the week and he was dealing with everything by himself. One of my a couple of my coworkers had come and dropped off some food. That was before we realized that Caitlin had all the food sensitivities that she has. But ⁓ you know, they were like, What can we do to help? And I said, you know, if somebody wants to drop food off and ⁓ you know, Frankie is very reticent about stuff. He's not gonna tell you he needs anything. He's just gonna try to handle it. And, you know, and he and he has really done the best he he he could over the years, but he is not gonna open up and say, I need whatever. He's just not gonna do that. so but I I distinctly remember my brother calling me and telling me, house is gone, mom's gone, we don't know where Pops is. And I remember just dropping the phone and screaming right there next to the dryer. realizing that and I said, What happened? And he said there was a fire. And and I remember hearing the therapist behind me going, Well, what is wrong with her? And that was why I did not open up and say what was going on, because it was just it was where had how do you how do you bring that into a conversation? I guess the point I'm trying to make is if your parent seems disconnected, it could be that they're processing something else that they can't process. ⁓ and it's okay as a therapist to say, hey, is there anything else going on? You don't have to tell me a lot of details, but you seem really disconnected. Is there something going on? And if someone had asked me, I could have given them a cleaned up version. ⁓ and I'm not it's it's I'm not blaming, I'm not blaming anyone. It's not that. It's just a learning thing of if you happen to notice your parent really checked out. or you know, we see survival mode written on I see survival mode written on my patients' families' faces a lot. And being able to tell them, listen, it's it's okay for you not to be at the hospital 247. If you gotta go home and feed your dogs and do that. Or, you know what, if you just wanna go for a walk and do nothing. Or whatever for a little bit. But if you happen to see your your parent comp who had at least been somewhat involved and s and asking questions, whatever. And if you see them completely check out, just ask them, is there something else going on? Maybe they don't have to give you all the details, but maybe them just saying there's something huge that's going on with my family. But I was completely checked out the entire month. And looking back, I was able to see how checked out I was. And it wasn't that I didn't care about my daughter. wasn't that I didn't love my daughter. I just couldn't you can you you can only handle so much. You can only handle so much. You know, you have to you have to get to know a family for a little bit before you're able to read the room. And you really have to pay attention. And for you guys, you guys coming into into people's homes and helping us, you're amazing. You're amazing. You're lifesavers. We, you know, we rely so heavily on on you guys to help us and to teach us. And to help us teach our kids and that ability to be able to read the room, it's a big one and it's hard. And ⁓ I don't envy you having to come in and do that sometimes. Because some people are just I some people are shut off to begin with because for whatever reason. And so trying to eke anything out of ⁓ is like cracking open a a turtle shell, you know? That's hard. speaker-2: Yeah, yeah, for sure. For sure. ⁓ well, we are we're heading towards the end of our time, but I did want to give you both ⁓ a chance. If there is anything that we did not cover, there's so much we didn't cover. We just barely scratched the surface. ⁓ and like I like to say, for a lot of our podcasts, we're just getting the conversation going, right? So I would like to challenge those of you business owners, business leaders, decision makers out there. to take a step back and think about your policies, think about your day to day, ⁓ think about your staff training, ⁓ our B C B A's too, right? Sometimes we just think of staff training for RBTs, but B C B A's too. And how can we support our staff? ⁓ how can we show up within the values and the missions with the mission of our companies? But to make sure that we're including that, that ⁓ the education of how to show up for parents and how to support and all the things that we're talking about today. So for sure. But is there anything that you wanted to make sure we were a that we cover today? Any specific points? Any anything? now now's now's your chance. speaker-1: Think that the most important thing for me is to know that ⁓ I think almost all parents of children with autism are coming from a place of trauma and their lives are very, very different than they had planned on them being. Their lives much more complicated. And they don't want to not run a program. They want to see success. And for me, all I wanted to see was my child build skills. I wasn't even concerned with reducing problem behavior because I knew. what was most important was that my child was learning and growing. ⁓ and if and if parents seem dissatisfied, there's a good reason. ⁓ people if people are complaining, there's a good reason. And it's it's it's a very hard, it's very different sort of life. And everybody's coming from a place where every moment in their day is much more complex than they had intended or or imagined. speaker-0: Very much so. ⁓ looking I would say those beginning sessions, if you try to ask anybody like what what are your goals, we're not gonna have a goal. I think just ⁓ initially coming in and the first few months saying you know, doing an evaluation saying, Hey, this is what we're seeing and this is what I feel like we can help might be enough. and of course every parent's gonna be different. Maybe maybe other parents have have researched through, have ⁓ had a chance to talk to some other people about it. Maybe, you know, maybe they're maybe they're not quite as isolated. You know, every every case is different, like you were saying. So but even just coming in initially and just saying, this is what we're seeing. This is where we think that we can help before You know, they s start working on these are the this is asking the parents, this is where we want. I mean, I'll be honest with you. I wanted Caitlin to be safe. ⁓ I did want her to learn things. So we just didn't know. It was we were there was just so much we didn't know because it was such a new thing. ⁓ we didn't know anybody again. we I knew what was in a textbook and what's in a textbook is not the same as what you're living that life. in ⁓ and it is a it's a spectrum disorder we know that do you know it that's why it's called the spectrum disorder is because you're gonna see all everything from from the most mild to the most severe. We were we were very we were very blessed. We were so thankful that we had the ABA therapy that she had. ⁓ It was incredibly helpful. And I again the therapist that we had taught us along the way when we didn't know what to ask. They taught us along the way when we didn't know where, we didn't really know where to, we didn't know where to begin. so you're gonna have parents who have researched and might have specific things that they want to address. And then you're gonna have some parents like like us who are like, what what in the world is going on? You know? And j just being able to walk in and and start and say This is what we're seeing. This is what we think we can help with. ⁓ might be the might be the first, it might be just what you have to do for the first few months. It's just so fluid. Like I said, I I my hat's off to all of you guys. You're we couldn't have done it without you. We couldn't have, we wouldn't be where we were if we didn't have our ABA therapists, we wouldn't be where we were. we learned to teach Caitlin skills because you taught us how to teach, how to teach her these skills. I I can't say enough good. For the all the for the couple of bad experiences, I I I can't say I can't say enough good. speaker-2: ⁓ I I'm glad I'm glad to hear that. because ABA can be very helpful. and at the same time, you know, we've grown as a field a lot ⁓ over the last couple of decades, and we still have a lot of growing to do. ⁓ we still have a lot of learning ⁓ to do and ⁓ changing our own behavior and in a big piece of that. ⁓ Is is kind of being able to self evaluate. And we've had many podcasts here more recently where it really has come down to parts of the conversation. I mean, yes, there's this there's a whole system and yes, we can improve the system, but we also have that responsibility for our own individual behavior. And part of that is to be able to self reflect and self assess and understand who we are. So one of the big takeaways I'm hearing from from both of you is. it is to it if you, you know, ask yourself as a clinician, kind of sit and maybe journal or sit and spend some time thinking about your own self-reflection and your own own understanding of yourself. And and it maybe get a little curious and and wonder, hmm, can I read a room? How good am I at reading a room? How good am I at meeting parents where they're at? How good am I at egg striking up those conversations and helping them to feel heard and safe and you know, and and providing that environment for for safety for for for everybody involved and and being able to know, you know, do you have goals? Or, hey, I hear well, I mean, you did have a goal, Melanie, it sounds like, was to keep my child safe. And so some families, their goal is to ha keep my child safe. Other families it's, you know, something maybe more more specific as far as like I want my child to be able to Playboard games with the family every Friday night. You know, it it could anywhere in between anywhere. And we already know. We know their spectrum. We know the variety. But and to be able to to know how to to read the room and how to show up and compassionately and and all of that. So that that would be my one of my other one of my other big asks for you guys that are listening is just to kind of sit and be curious about your own where you're at, your own behavior. ⁓ so Ladies, thank you so very much. I I think this is a great conversation to ⁓ to bring some awareness and of what it's like. Just a little tiny, little tiny peek into what it may be like to be a parent of a child with autism and and and and all the complexities that are there within that. So I really appreciate both of you so much for taking the time to to have this conversation. ⁓ publicly for others to hear. Thanks for being so vulnerable and for sharing. And and for those of you who are listening, ⁓ thank you for showing up and we can't wait to see you next week. Thanks for joining us on ABA Business Leaders. speaker-0: We provide mentorship, courses, handbooks, billing support, credentialing, HIPAA support, web design, and more. Everything you need to build an ethical and sustainable ABA practice. speaker-2: You can find all of our resources at threepiesquared.com. speaker-0: Don't forget to subscribe and share this podcast with other ABA business owners. speaker-2: We'll see you next time and remember you don't have to build your practice alone.