At the age of three, Kash was diagnosed with epilepsy, so he’s had a lot of medical issues to work through. After four years of ABA therapy, he has a few words, some signing abilities, and an AAC to help him communicate his wants and needs.
Walking Emily through the 4 steps of the Turn Autism Around approach, I want to emphasize that this is not medical advice and should not be taken for that. My approach helps parents to identify the most pressing need for their child. I personally believe that for ages 6-10, especially when they don’t have language abilities, is one of the most dangerous time periods for children with autism. The number one leading cause of death in children with autism is drowning. If a child loves water, but can’t swim, then you can see how dangerous it can be.
Keeping track of Kash’s behavior will help Emily as she talks with doctors so that she can confidently remember how often and how long his tantrums last. Plus, the calendar tracking system can also help her see how medication might be affecting Kash’s diet, behavior, or sleeping patterns.
My book Turn Autism Around: An Action Guide for Parents of Young Children with Early Signs of Autism is in stores now. This is the guide I wish that I had had when Lucas was first diagnosed over 20 years ago, and I hope it will help any parent struggling with a new diagnosis chart a better path for their child.
Disclaimer: From time to time, BBC Materials may discuss topics related to health and medicine. This information is not advice and should not be treated as medical advice. The medical information provided in the BBC Materials is provided “as is” without any representations or warranties, express or implied. You must not rely on the information in the BBC Materials as an alternative to advice from your medical professional or healthcare provider. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment for yourself or an individual in your care as a result of any information provided in the BBC Materials. All medical information in the BBC Materials is for informational purposes only. See our full terms at www.marybarbera.com/terms-2
Emily R resides in Indiana with her husband, her son Kash, and daughter Briella. Her son Kash just turned six and has severe autism and is nonverbal. He also has epilepsy, GI Issues, and aggressive disorder. She has a Bachelor’s degree in Applied Behavior Analysis and will receive her Master’s in Special Education, with an emphasis in emotional and behavioral disorders in May 2021. She has a blog titled Mama to Kash’s Voice where she shares her journey through the ups and downs of autism, epilepsy, aggression, and cecostomy tube.
- Why I choose to count problem behaviors as an episode instead of as individual behaviors.
- Why safety and safe behaviors for children with autism should be one of the highest priorities for parents and providers.
- How taking a step back and using the one-page assessment can help you gain a more accurate view of the best plan to help a child.
Attend a FREE Workshop!
— Turn Autism Around
— MaryBarbera.com/workshop (Sign up for a free workshop online for parents and professionals)
— #090: Apraxia and Autism: What is Apraxia of Speech | Interview with Tamara Kasper
— #108: Autism Assessment: Step one of the Turn Autism Around Approach
— #112: Planning and Setting Goals for Autism
— #115: Autism Teaching Strategies: How to Teach a Child with Autism or Signs of Autism
— #118: Dually Certified SLP/BCBAs on Collaboration with Parents and Other Providers
— #120: ABA Data Collection: Step Four of the Turn Autism Around Approach
— #028: Autism & Medication with Dr. Michael Murray, Psychiatrist
— Mama to Kash’s Voice on Facebook
Transcript for Podcast Episode: 122
Putting It All Together — The Four Steps of the Turn Autism Around Approach
with Emily R
Hosted by: Dr. Mary Barbera
Mary: You're listening to another episode of the Turn Autism Around podcast. I'm your host, Dr. Mary Barbera. And today we have a very special session of the podcast. We are doing our first hot seat. And this is kind of like laser coaching, a case study. I am interviewing Emily Ransom, who is the mother of two children, and she has one son, Kash, with severe autism. He also has epilepsy issues and aggression. So what we do is I interview Emily, but then I walk Emily through the four steps of the autism around approach because Emily just started to read my new book and she has a history. She is actually finishing her master's degree in special education and she has an undergrad in applied behavior analysis. So in this session, I'm not only interviewing Emily about her wonderful work at Mama to Kash's Voice dot come and her writing, but I'm also walking her through the four steps of the Turn Autism Around approach so that we can help Kash do better in all areas. So I think it's a great episode. It's our first little hot seat and it is going to be helpful for both parents and professionals. So let's get to the special session with Emily Ransom.
Mary: Emily, thanks so much for joining us today. I'm really excited.
Emily: Thank you for having me.
Mary: So I know you have such a great background as a writer, as a blogger, as a mom, and you're pursuing your master's degree and you have a behavioral background. So I wanted to have you on for those reasons. And you also are going to try out a little hot seat or a little laser coaching, too. So we're going to get to all that. But before we do, I would love to hear about your fall into the autism world.
Mary: Well, it started almost four years ago. My son was two. He started displaying the common signs of autism. He was non-verbal. He flapped his arms. He was very socially awkward. He would not interact with others, very independent. He wanted to be by himself, wouldn't interact with boys or people, no eye contact. But this all started when he was about 10 months old, like he did have a few words at seven months, but then stopped at ten months. So then we started noticing little signs and I started doing my research. And then I'm like, you know, I believe he has autism, but. Then I hear the doctor say, oh, he's a boy, he'll outgrow it, you know, and I'm like, no, something's going on with my son. So then I pushed and pushed and then finally got the diagnosis and then I immediately put him into early intervention. Actually, it started early intervention was one. We have a little program here in Indiana called First Steps, where they come in the home and speech, OT, physical therapy. Did their assessment. And we started speech notes right away before we even got the diagnosis because I just knew something was going on.
Mary: Yeah, you are a first-time mom at that point. And you didn't have any educational background at that point?
Emily: Well, my background, I was going to school for criminal justice, so I knew that side. I didn't have like any side of autism or behaviors or special education. So this was all new to me. So I had to personally do my own research to find the answers.
Mary: Yeah, and your son also has developed seizures. And when did you start worrying that maybe this was seizures? Were people telling you? Well, maybe it's seizures or not autism? Or did autism come first or where did the seizures come into play?
Emily: Autism came when he was two and then the seizures started when he was three. His seizures are more focal. So he kind of like stares off, dazed and confused, kind of slouches down a little bit. So we hurried up and got him into the neurologist and she did all the eggs, the twenty-four-hour eggs, and diagnosed him with it was called the infantile spasms or infantile seizures. And then she immediately put him on medicine to help him. And he's actually been seizure-free for over a year now.
Emily: Oh wow. That's great. So now your son, his name is Cash and he is six years of age. So how is he doing now?
Emily: He's actually doing really well. We've been in ABA now for almost four years and he's made huge gains from ABA. He's still no words, but he is making sounds. He's communicating through signs. He knows well over 70 signs, and then he has a communication device that he communicates his wants and needs. But and then he also is doing, he's very smart. It's just trying to communicate with him and get those words out or get like if you want something instead of like just pointing, we try to get him to like sign or like get his device and kind of like show us what he wants.
Mary: Yeah, I recently did an episode, a podcast episode with three speech pathologists who are also BCBAs. And we talked about AAC, augmentative alternative communication, including devices and signs. And I think there is a lot of confusion and a lot of lack of training, especially for parents. Like how did you get trained on this augmentative device?
Emily: Well, it first started when my son started at his new center, the first center he was at. They were more focused on the signs of communication instead of rushing to the device and he was picking up the signs. So that's what made them to continue with the signs. And then I got to a point where it was a standstill, where he wasn't picking up on anymore. He wasn't doing them as much anymore. So then that's when we transition to communication device. And we chose the protocol to go at it because it can be like specified for my son, like we can put his pictures and his favorite things there so he can tell us that way. We did have an assessment with a speech pathologist and she recommended a different app, but we felt that it wouldn't work for our son. So we decided to go another path. And we're happy we did that because he does communicate with this device now.
Mary: So you have really had a journey with the whole medical piece, much more so than. Most people that I heard, so what I thought we would do, because you also said that your son has pretty significant aggression and I had been following your work, what you what is your blog's name?
Emily: It's Mama to Kash's voice.
Mary: Mama to Kash's voice. Yes. OK, and that's MamatoKashsVoice.com. And we will link that in the show notes. But, you know, you do beautiful writing. And I mean, the journey that you've been on has been very different than many people's journeys. And you also made the decision to have another child and you have a little girl now who's eight months old, and she also is showing some concerning symptoms?
Emily: Yeah, yes, my son, he was diagnosed with abnormal muscle movement when he was a child of the neurologist. Like he when he gets excited, like his arms get all stiff, his legs it all stiff. And then she got diagnosed with that as well. And then just like little repetitive behavior, like she'll move her head back and forth. The same thing my son did when he was younger. So just like little things were kind of keeping an eye on him, which it's hard to think that I could possibly have another child with autism or special needs. But it's just more prepared now like I've accepted it. If it happens, there's nothing we can change. All I can do is give her the help that will make her better.
Mary: Yeah. Do you have early intervention for her now too?
Emily: Not yet. We have to get a referral from the pediatrician and she'll be going in the next week or two. So hopefully we can get that referral and see what's going on.
Mary: OK, well, let's talk about you ordered my book. You're on chapter two now. You joined my book launch team. So that's how we connected. And I thought it would be helpful to the listeners out there, both parents and professionals, to take your son as an example. And as you read the book and as people read the book or participate in my online courses to kind of do a mini hotseat or mini laser coaching. Not that I can really give. I can't legally, ethically give you any clinical advice on what to do exactly. But I do feel I remember way back when I worked with the Verbal Behavior Project, we had Dr. Mark Sandberg come in and we presented case studies in front of him. Now, we had the benefit of the like preparing the case studies, having videos, talking about the data collection. And then I remember specifically we presented this this boy, I forget how old he was, maybe eight or ten. We had his mom there and we presented videos. And it was just a really eye-opening experience for me as a as a newer BCBA. This is probably a couple of years into me being a BCBA.
Mary: And it was really helpful because he would point out things that I wasn't thinking of, like, for instance. And I think we talk about or maybe we talk about this on Dr. Sundberg's interview when he did the podcast last year. I think so. One of the examples of where he spotted something that really changed my whole way I was doing things is the video showed the teacher holding up two pictures, one of each hand, one was a banana, one was a shoe. And she'd say to this, this child who was also not talking, he had pica. He had a lot of problems. And the teacher held up both of these cards and said Touch Banana and his receptive abilities were terrible. A part of it. Why his receptive abilities were so bad was because it's impossible to help or prompt or to a point prompt if your hands are full as the teacher. The other big thing he pointed out was the child needs to get matching, scanning and matching down pat before you can really start really focusing on receptive ideas. So that example alone with something that. To me, doing. Case studies are hot seats or laser coaching, and I think with the with the book, we can really help a lot of people by really just talking really big view of things that you might want to consider.
Mary: You might not because like, I don't know all the situations, but let's go through the four step turn autism around approach and how that would relate to Kash. And these same the same four steps can also be used with your daughter, who may turn out to be typically developing and just to get some delays, it doesn't matter. It could be used for a 10-year-old that's still of talking or talking just a little bit. It could be used for anybody. But I think your son, because he has the complications of all the medical issues, might be a good example to really help you as you proceed through the book. So the first thing I would say, whether or not you have the book is to go to autism around dot com and to download a two page PDF that are the book resources. And my team put this together and it's really a handy resource. So as you are reading the book, or like I said, you don't even need the book to actually go through this, you could see if the book will be interesting to you. But just based on my podcasts and downloading this free download, we will put the link, it's Turn Autism Around.com. Go there, get the book resources. All you have to do is give us your name and your email address. It's free of charge and you'll be able to read the first chapter, listen to the second chapter and get all the forms that we're going to be talking about as we walk through how I would implement this with cash.
Mary: OK, so the first step of the Turn Autism Around approach is assessment that you might be thinking. Emily, like I've been at this for four years. He's got reams of assessments. He has a VB-Mapp, he has this assessment, he has his GI assessment. So even if you have tons of assessments, I still would start with a one page Turn Autism Around assessment, which is in Chapter four of my book. But it's also the assessment is in Chapter four of the PDF, and there's also a sample of it already completed and a blank form. So you would download this and you could fill it out right online and we would just go through the date of completion, the person completing all that's up date of birth and then all his diagnoses, which we talked about and then we talk about safety. We would also talk about medication and allergies. Is he on any kind of special diet? That's the first thing that we haven't talked about.
Emily: He actually has a milk allergy. So he's on like soy milk, but he's not like I'm gluten free or any of that.
Mary: OK, and then what about safety awareness concerns? Will he wander off? Will he go towards traffic or?
Emily: Yeah, he has no awareness to danger. He'll elope. If we're out in public, I always have to have my hands like holding his hand. Cause if he does get in the behavior, he'll just start running. He won't look for any sort of danger. We had to get here in Indiana. It's called safety net, which is like Project Lifesaver. It's like a little ankle or wrist. We have one for him in case he were to elope. Then we also have a specialized bed for him. I don't know if you've heard of Beds by George. It's like a specialized bed for kids with autism, with a history of elopement, wandering and then also epilepsy because it's like padded inside. And then you can like you can shut it down where he can get out. And we have one of those for him to kind of help them from like wandering and eloping.
Emily: And so scary. Have you ever had to call the police because he's gotten away?
Emily: No, thank goodness. But there's been times where, like at my in-laws, they have a big pond and he's drawn to the water. He is taken off and ran towards the water. And my in-laws, you know, they couldn't keep up with them. So he almost got into the water. So that was a really big scare. It's still keep your eyes on him.
Mary: And personally, I think like ages six to ten, six to eight, especially if they don't have language or our understanding is a really dangerous age. And so chapter three of my new book, Turn Autism Around, is all about safety. And in there, I tell the story of how one of my previous clients. I worked with them always little when he was I think he was six, he wandered off and drowned. So I mean, not to scare everybody scare you, but I mean, we're all aware of how dangerous we did have to when Lucas was little called the police. And we had very bad scares a few times. So all the free PDF that you can download, we have the whole bonus video on keeping kids safe and the chapter in the book. And so that is always safety is first. And it sounds like you've already put a lot of procedures in place, like the Project Lifesaver band, the specialized bed. You're on your toes.
Mary: And like you illustrated Emily, like when you're away, when he's at the in-laws, when you're in unfamiliar territory. So that's right on here. And that's not the kind of thing that's on a behavioral assessment or my link. And this is a real concern of there's a very high percentage. I don't have the stats on me, but it's in my in my book, I talk about, like, the it's the number one leading cause of death in children with autism is drowning. And it's just a really scary thought. So it is moving on to so we're just going down the left hand column of the one page assessment form. For those of you that are listening, you can't see we're going to put all of this in the show notes so you'll be set. So the next column, the next section is self-care. We talked about potty, that he's not toilet trained. He's got a special tube, which complicates the matter. And then how about eating and drinking? Like, can he feed himself, is he fussy? Does he do only certain textures?
Emily: He eats only certain foods. He has this particular food that he'll eat all the time and he'll only drink out of like a straw cup. You can't do it on a regular cup because he just spills it all down on him and then he can't handle like food or his drink gets on him like that sets him off where he has to be changed or needs the napkin right away. He'll start screaming. He just doesn't like the feeling when it hits the skin.
Mary: And how about bottles, pacifiers, utensils?
Emily: He does use utensils when he wants to. Sometimes he gets frustrated because he has a lot of fine motor skills and gross motor skills issues where it makes it a challenge for him. So sometimes he gives up and then just eats with his hands.
Mary: Yeah, but no bottles or pacifiers. OK, and then grooming and dressing like brushing teeth, washing hands as they need assistance with all that.
Mary: Yes, yeah. So in addition to the one page assessment as we're going through it under self-care, we also as part of the book thanking Mark Sundberg for letting me recreate some of this health care checklist. The self-care checklist is on the free PDF because I think a big mistake parents and professionals make is focusing too much on language and behavior and not enough on those self-caretasks, the sleeping, the eating, washing hands, potty training, things that are really functional are going to make the family's life better, the child's life better. And my goal for each child, whether it's my two adult sons, one who's completely typical and one who has severe autism, and for your son and your daughter and everybody listening, my goal is for each child to be as safe as possible, as independent as possible and as happy as possible and reach their fullest potential. So we are I mean, you have already told us all of the actions you've taken and the some of the actions you've taken that have been really good. So focusing on self-care, I think is an area that I'm hoping that with my new book and this four step approach where we're good with.
Mary: So in addition and I'm not going to go over everything in this form because that will take forever, but basically the one page assessment, then we go into, how does he request? How does he label? Can he imitate echoic? Can he imitate gross motor? All of those things that you have really a snapshot of. And then the final question on and you talked about his language. A little bit, you didn't really tell us much about the problem behaviors, so can in the last very last section of the one-page assessment is please list any problem behaviors, crying in attention, hitting, biting, lining up toys, stemming scripting and estimate the frequency like a hundred times a day, 10 times a week, 80 percent of the day and just jot that down. So just in a nutshell, what are the big and small problem behaviors that cash demonstrates?
Emily: Well, he when he gets frustrated, he can walk to the ground, roll around, we'll hit the kick. You'll hear this new one starting to pinch and scratch you.
Mary: He'll run out of out of those major problems like aggression, pinching, bopping to the ground. Does he do those daily few times a day? Every day, every day and a few times a day?
Mary: Usually it's usually at night when he's in, like, ABA all day long. I don't know if it's just he's tired or frustrated. It happens probably over 20 times a night.
Mary: Twenty episodes, yeah, wow. And what about all day in ABA, is he demonstrating major problems?
Emily: He has noncompliance where he doesn't want to do something that they're asking him to do or he wants to go do what he wants to do. It's just the demands. ABA is a big thing for him. He does not like to be told what to do.
Mary: Right. And do you get like somebody to come to your home and go to school and look at the whole picture? Or is it pretty now? It's pretty much just a school and then home. You're just kind of winging it.
Mary: Yeah, like at our other center that we were going to be was I was able to get parent training where I could go in the center and work with them. And I really wish that his new center provided that they didn't do it at home at the time, but now they do as others enter. So I kind of wish that his new center did that, like where they came in the home to see the behavior and see how he acts and everything
Mary: You're pursuing almost finished a master's degree in special education. And then you have a bachelor's in the applied behavior analysis and he's still having twenty episodes of aggression?
Emily: And it's not the twenty episodes. They're not like every single night. It's just it's like every few days I would say twenty times but it's not every single day.
Mary: Yeah. And I'm totally not blaming you. I'm just like wow. You know, like that's a lot for you to handle and a lot for you to try to navigate. So I would say your safety and your problem behaviors, I mean they go hand in hand. And I think that us kind of talking about all the struggles, maybe helping somebody out there listening to maybe not feel so quite alone, but also because I am going to kind of walk you through how I would get things better, because, I mean, like I shared with you, like when Lucas was little, we did have to call the police. He did a loop a few times to where he could have died. And he also had at some point in his life, self-injurious behavior, aggression, whining, crying, noncompliance. But I can say that his major problem behaviors are near zero levels. And some of that was figuring out the medical piece and some of it was figuring out the behavioral piece. And some of it was probably luck. But, you know, I I just don't want you or people listening to think that this is has to be part of his autism, has to be part of his disability, that you just have to get used to it because he's six now. He's going to get bigger, he's going to get stronger.
Mary: And I just want each child to be moving in the right direction. And maybe they'll be something I say or something that you read in my book after this is over, that's really going to help you and others listening to move forward. OK, so we're still on step one of the autism around approach, which is that one page assessment, the self-care checklist, which has four parts. Then I also recommend then in Chapter four, recording baseline videos of the child alone for one minute and the child, you try to engage a child for one minute and just as a baseline. And then we also do language samples. We have a language sample, blank version. And you can also check out the sample. And this is all discussed in Chapter four. But you did say that he says some sounds now, which is awesome. So what kind of sounds or even word approximations does he say?
Emily: Well, he can say like moo and stuff. OK, well, it's like but sometimes he has issues with like, you know, they're assessing for apraxia because they feel that he has because he struggles like he is trying, but he just can't get the words out.
Mary: Yeah. Or that many, many of my clients in the past have had a proxy with autism. And I actually did a podcast episode with Eric Casper, who is a BCBA and SLP on apraxia, so we can link that in the show notes as well. So pretty much Tamara said in that episode is like we we would do the same things for cash, whether or not he's diagnosed with the practice and he clearly has motor planning and issues with talking. But the fact that he's saying moo and that's all good. And so I would. Look for other babbling sounds that he might be making and work on those sounds too, and not to stop sign or stop your pro quo, but to really give him any total communication skills that he could use because it's a lot easier for him to say no or stop or head than it is to go get a device and get the right screen and push it. So the response effort is much easier for local language. So it sounds like he might be saying some new sounds, which is super exciting. So that's all the assessment now. I'm a big believer in the VB-MAPP assessment. I have horses that show people how to do that and everything like that. But I'm also a believer in parents doing the four steps easily. And then if. You're ready if you've got these four steps down and if you have some professional help, because most people are not going to be able to just whip out the bibimbap and do it and know what to do to program. So that step one is assessment step two. Do you have any questions about step one? Now, that sounds good.
Mary: And then also all the medical issues, you know, and we can talk about that and step forth how I would keep track of his seizures and problem behaviors and that sort of thing. OK, so step number two of the term autism around approach, which is documented in Chapter five of my book, is on making a plan, making a plan based on your assessment, making sure your goals are appropriate and gathering materials. So we have a one page plan that's in the book and on the free PDF that you can download with a sample as well as blank. But basically it goes over from your assessments, strengths and needs. And then we make a plan. So my gut now, I don't have like I haven't been taking notes as I've been asking this question. So I'm a little like, OK, so I would say based on this one page assessment, as soon as we get down to the first need, which is safety. Right. So safety is a need. So we take the safety, we put it on the needs column of the plan because that's obviously the most important need. So on unsafe around water traffic and looping from houses and that sort of thing.
Mary: So we've got that as our first need, eating and drinking. I mean, he's drinking out of a straw. He's eating. You're not describing a child who will only eat gluten free crackers morning, noon and night and drinking out of a bottle and lots of a six-year-old daughter, Non-vocal, are not even drinking out of a straw cup and that sort of thing. So he can use utensils. It's more of a motivation issue. So I actually think his feeding isn't that problematic, just as a what are his big needs and how is his sleep? Is he sleeping through the night?
Emily: He's actually on melatonin to kind of help him sleep. And then we're going through a sleep disorder doctor right now because they think he possibly has sleep apnea. We're going through the process to kind of get, to see if he does have it.
Mary: So sleep is a need then. That'll go under the collar, getting better and more independent with grooming and dressing, brushing teeth, washing hands and potty. Those are all needs. And then his language is need to he needs to learn new sounds and words and uses device and all that kind of stuff. And what are some other strengths as he does that? What does he like to do?
Emily: Like he's really good at puzzles.
Mary: Oh, great. So that so that matching is on here, but we didn't get to that call him. So matching would be that's excellent.
Emily: He's very good with manding and tacting.
Mary: OK with his sign and this device is good. So he's pretty proficient with his AAC. He matches. How about like an iPad in terms of playing apps or navigating his way.
Emily: Oh yeah. He prefers our phone actually like we have a tablet for him, but he wants to use our phone and he can just like navigate it like a pro at it. He uses my husband's phone and my husband showed him the passcode. One time. And Kash has remembered it ever since and he just goes, takes his phone and types in the password.
Mary: Yeah. And he has it. So he has a good memory. Yes. When he likes something, he's very compliant and happy. Right. I've seen pictures of him where he's smiling and and then also in the needs column we've got the medical issues, although you're saying his seizures are stable. So that's not like a pressing need at the moment. So you can see how we line up his strengths and his needs and you might think, well, why don't we do that once a year as part of the IEP? But really, are we looking at all the areas here, not just school, especially when you've got your clinic and then you're not feeling like you're getting any real support at home for these big needs, big behavioral thing. And then, of course, a major need in addition to safety is his major problem behaviors of flopping to the ground and aggression and those sorts of things. So we put that there and then we make a plan now the teaching part. So step three. So step one is assessment step two is plan step three is teaching.
Mary: And I did do individual podcasts on all of these steps. So we're going to link those in the show notes as well. Hopefully we're not overwhelmed with everybody listening. So step three, we can't, like, tell people reading a book what to do in terms of actual teaching. But in general, we want to spend ninety five percent of our time preventing problem behaviors. We want to we want to be give a positive story negative. We want a child running to the table or to the desk to learn or running to wash his hands because it's fun and he's good at it and we want them running to use utensils. And so if they're not, then we have to go back to the drawing board to read. Care to look at reinforcement to make it a good situation, and that's obviously it's the biggest step and it's the one we're going to talk least about, because I think if we can get the podcast listeners just a plan of, OK, let me download this free resource at Turn Autism Around dot com. Let me do the one-page assessment, which should only take you about 10 or 15 minutes to complete. Let me do the one-page plan based on that assessment. Let me move things forward and start seeing things as a bigger picture to hopefully get your child better, better at different in different areas.
Mary: And then the fourth step of the turn, autism around approach is keeping easy data. And I have done a video blog. It's on how to keep a calendar and I think a calendar, especially for kids like Kash who have medical issues on top of behavioral issues, on top of doctor appointments. And this tube is placed. And that's seizure med has changed. And this is done. And I don't know if you have something going like this, but with Lucas, for instance, we keep track of allergy shots and see if he's on antibiotics or anything and red pen on this dedicated calendar for him. And then also if he has any self-injurious behavior or any agitation because it's so low. Now, one of the one of my just gut reactions, and I don't know if you're doing this, is if Kash has a meltdown and says he throws himself on the ground and then he kicks and then he punches and it's all a part of the same tantrum, if you will, the same episode. Although if you counted them individually, you might have 10 or 20 different behaviors going on. I would pretty much count it as one episode. Yeah.
Emily: Yeah, I didn't think about that. So whereas I was counting them so it would be less than 20. You think about it.
Mary: Right, you're probably counting all the little stuff. Yeah.
Emily: The little things like, he hits, that's one you know. So it'd be less than 20. I would think.
Mary: Right. Right. And then because you're not supported at home by a behavior analyst or anything, it's easy to go like that with night was a disaster or, you know, last night was a disaster. But you don't quantify it. You don't write it down. So that's why I feel like we should be writing, have a way to count. And usually when it's multiple things within an episode, I say count that as a major episode. If it involves flopping or any aggression. It's a major if it's like more of a whining and not quite a problem, that might be a minor episode. But first, first and foremost, I would get try to get your major problem behaviors at or near zero, though.
Emily: Yeah. Keep track of what he does, how long it lasts like that.
Emily: Yeah. Because otherwise you just are kind of chasing your tail. And also I mean we're not even talking about like functions or what provokes it or what, and just simply because we don't have time for all that. But it's all outlined in chapter six. It's all outlined all about problem behaviors. I talk about the calendar system and I also have in Chapter six a calendar data sample, and I really do use a physical calendar. I would recommend a physical calendar because if you do it on your phone, then you want your phone. And also with the physical calendar, you can look, I usually get a whole month's were like, open it up, it's a whole month. And then when I go to doctor's appointments with Lucas, I can bring my calendar, I can open up and I can really quickly see what is going on medically and behaviorally. We also talk about ABC data and see the behavioral consequence. But it sounds like until you can get his episodes down and prevent them and you don't have support at home, it's hard to keep doing ABC data on five episodes a night. Like it's probably like you just need to have a new plan to have a there's a chapter on sleeping. So you get a sleep plan. There's a chapter on potty training, you get a potty training plan and you have to adapt it because especially for cash, he's got. Medical things going on that are also part of it. So those are the four steps, Emily, is that helpful to you or is it confusing or do you have big questions?
Emily: Actually, it helps me out a lot because trying to go to doctors and remember, like how many episodes and how long they last? Like, it's hard to remember at all, but if I have that calendar in hand, I can be like, OK, what happened on this day? At this time, this was the length of the duration. So then I can explain it better to his behavior. Doctor, as I just give her an estimate, it could have happened more and I'm just given an estimate. So I really do think these four steps will really help in our health.
Mary: Yeah. And I'm also thinking, as you're saying, that is get two calendars, one for your son and one for your daughter, because the more you can keep track of things like I started this calendar system when Lucas was having aggression, self-injurious behavior, agitation, he was having medication changes. That's another huge thing that I mean, his medications have been stable, his behavior has been stable, but it doesn't sound like Kash is for his behavior reduction. So I did a podcast episode number twenty eight with Dr. Michael Murray, who Lucas's psychiatrist. And that would also be a good thing for you to listen to, because I do think that I mean, you're doing an amazing job handling all of these different complications. And like you said, it is hard to keep track of. And it took me years to come up with this system, this calendar system, which is pretty basic, but it really has enabled me to take a bigger view down and look at the whole situation. It just makes sense.
Mary: So I'm glad that this is helpful and I think it'll be helpful for our listeners as well. So you have just been a trooper. I kind of saw on you when I saw your bio and I saw your concerns and your beautiful writing, I kind of sprung this on. You like to help you walk through the four steps, and I am excited for you to read, read to do the fourth step through both your kids, because the new book, even if your daughter is not on the spectrum or even if she was not showing delays, there is just so many techniques in the book to get your children safer, more independent, happier, get your family on the right track and when there are problems to figure out how to take the right data, because, I mean, you're learning how to take all kinds of data, but is it really functional? Is it really helpful?
Emily: Well, I really think with your new book, The Turn Autism Around, I really feel like I wish I had something like this at the very beginning as I was, like, searching for answers and how I can help them. And I had to do it on my own like there was nobody that hired me. And with this autism around, I feel like you're helping parents like. Where they don't have to, like, you know, worried enough and then kind of research like that takes up a lot of time with this book is a really perfect guide. I believe for new families going through it.
Mary: Yeah, well, thank you. All right. So before we leave, part of my podcast goals are for parents and professionals to be less stressed and lead happier lives. So what do you do for stress reduction, Emily? Because it seems like you have a lot of stress.
Emily: Actually, I. I try to do, like, self-care for myself. I'm really bad at not doing self-care. I always put myself last up, but like, I try to go, like, get my hair done, my nails done all that stuff because I feel like. Every parent deserves it and needs it, but I just enjoy spending time with my family and my kids, like I don't want to do anything else.
Mary: Yeah, yeah, well, that's great, so Mama to Kashs Voice dot com is where Emily's beautiful writing is, she is an amazing mom and it's Emily Ransom, thank you so much for joining us today, for being our first hotseat, laser coaching, whatever we want to call it. I hopefully it'll help people out there who have kids on the spectrum, have toddlers showing concerning signs, have kids with seizures. Whatever the situation is, we can always move forward. We can always get a little bit better and progress forward. So thank you so much for your time today, Emily.
Emily: Thank you for having me on. This is really fun.
Sign up to receive email updates
Enter your name and email address below and I'll send you periodic updates about the podcast.