Lauren is a married mom of two girls, who found my book and courses and is ready to begin to Turn Autism Around for her oldest daughter, Avery. She is taking the “hot seat” as we discuss her fall into the autism world, the concerns Lauren has had for Avery since birth, how to implement the steps of the Turn Autism Approach at home and with ABA therapists, and teaching toddlers with autism.
This family’s fall into the autism world began before the birth of their 3-year-old daughter. When Lauren was pregnant with Avery, she experienced low movement and had to have a C-Section birth due to Avery’s breech position. Her concerns continued throughout infancy as Avery expressed excessive crying without consolement. During childcare, Avery began to demonstrate problem behaviors and Lauren noticed she was very different and behind peers her age and younger. The problems and concerns continued and even worsened through the hit of COVID-19 when we were all in home isolation and after the birth of Lauren’s youngest daughter, Skylar. Pediatricians falsely reassured her and explained away Lauren’s concerns. After much research and pushing, she finally was able to see a developmental pediatrician that gave her the diagnosis of severe autism.
It is stressful and scary to receive a diagnosis like severe autism. I want to really emphasize the idea that just because you have this diagnosis now at age 3, does not mean this is your life now. Lauren is a motivated parent and she is educating herself on how to do her best for Avery. The Turn Autism Approach is made for parents and professionals like Lauren to help increase desired behaviors while decreasing problem behaviors. Together, Lauren and I go over the steps and important order of the Turn Autism Around approach.
4 Steps to Start Teaching Toddlers with Autism
Step 1: Complete the one-page assessment, language sample, and self-care checklist. Make it clear, concise, and graphable. This gives you an idea of where your child is at and identifies their strengths and needs.
Step 2: Complete the one-page plan. When you have a child with many strengths and needs, it can be hard to know where to start. This plan helps you decide what behaviors to start with, what is the standard you’re looking for, and how you’re going to teach it!
Step 3: Teach behaviors and skills. The goal of the Turn Autism Around approach is to increase desired behaviors and decrease problem behaviors. Increasing these good behaviors requires a lot of pairing and strong reinforcement. We are not forcing children to learn, we are encouraging it by making it work for their needs. I highlight the importance of table time in my approach and how to make it happen.
Step 4: Take easy data! Use calendar tracking, word lists, mand lists, or complete more frequent language samples. This data is going to be motivating for you and the ABA therapist that works with your child. Make it known the words and skills your child can do and how that repertoire is growing!
In this episode, we discuss all of Avery’s data and how Lauren can implement the Turn Autism Approach using the data and the steps. She is the perfect example of a parent “captaining the ship” and I even encourage her to take the lead when her visiting ABA therapist works with Avery. Lauren says that her key to self-care during this stressful time is utilizing and taking advantage of the help available to her. This is so true for everyone whether or not it’s family, friends, a church, therapists, etc. you can find your village, you just have to reach out!
Lauren lives in southeastern Wisconsin, and she is a mom of 2 little girls: Avery (almost 3 years old) and Skylar (7 months old). She is a registered nurse and completed her bachelors degree 2.5 years ago, but have had to mostly be a stay at home mom because her daughter Avery has severe autism. Her husband, Kainon, works really hard to make this happen financially as a diesel technician. Avery was diagnosed in May and Lauren’s world has really been turned upside down, even though things have been hard for a long time. She has been taking my courses and reading my book for the last month or so, and according to Lauren, it really has given her the power to learn and help her daughter.
- What does a diagnosis of severe autism mean?
- What steps to take with strengths and needs.
- The right steps to take in the right order.
- What to do with safety needs and meltdowns.
- How to work with an ABA specialist in your home.
—Turn Autism Around Book
—#056: Building Echoic Control in Children with Autism – Autism Mom, ABA Help for Professionals and Parents
—#111: Professional Collaboration with Parents | Interview with Ria & Kristen – Autism Mom, ABA Help for Professionals and Parents
—#114: Diagnosing Autism: An Interview with Developmental Pediatrician Dr. Cheryl Tierney
—#122: Putting It All Together – The 4 Steps of the Turn Autism Around
—#131: Precision Teaching and Autism | Interview with Amy E. and Kelsey G. – Autism Mom, ABA Help for Professionals and Parents
—#134: Programming for Intermediate Learners: Hot Seat with Swethana
—Why You Should Avoid Teaching More, Please, and Thank You to Children with Autism.
—Can You Predict How a 2-year-old with Autism Will Do at Age 8 or 18? – Autism Mom, ABA Help for Professionals and Parents
—Autism and IQ Scores | Supporting Children with Intellectual Disabilities – Autism Mom, ABA Help for Professionals and Parents
—Table Time and Reinforcement in ABA | How to Increase Reinforcement – Autism Mom, ABA Help for Professionals and Parents
—One Page Assessment
Transcript for Podcast Episode: 138
Teaching Toddlers with Autism using the Turn Autism Around Approach: Hot Seat #3 with Lauren
Hosted by: Dr. Mary Barbera
Mary: You're listening to the Turn Autism Around podcast episode number one hundred and thirty-eight. Today, we are doing our hot seat number three with our special guest, Lauren, who is a married mom of two girls and she lives in Wisconsin. Lauren's little girls are Avery, who will be three at the time of this broadcast, and Skylar, who is just eight months old. She is a registered nurse and she has been mostly a stay-at-home mom for the past couple of years because her daughter, Avery, is diagnosed with severe autism now. So in this episode, we are going to talk all about a toddler diagnosed with severe autism. What that means, why I would not look at that as a poor prognosis, and what steps you can do when you have a lot of strengths and needs to know what to do in the right order. Lauren actually won this hot seat by completing an Amazon five-star review and sharing that in our online community where she has taken the toddler preschooler course. Lauren said on Amazon she gave five stars and said, "When my daughter was diagnosed with autism, I really had no idea what to do. We kept waiting for the professionals to help and they did not seem to know-how. This book has taught me so much and gave me the confidence to help my girl. I am also taking the online course for toddlers and it has been so helpful." So if you have something positive to say, I would love it if you would give it a review on Amazon and, or anywhere else on this podcast or anywhere you're listening. If you write a review too, it would be really helpful if you take a screenshot and share that on marybarbera.com/success and also to give us feedback and tell us what you like and what you're still struggling with and maybe you'll get on the hot seat sometime in the future as well. So let's get to hot seat number three where we're talking about severe autism, what to do with safety needs and meltdowns and how to have ABA staff come in and work with you to help your child to reach their fullest potential and do as well as possible. Let's get to it.
Welcome to theTurn Autism Around podcast. For both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host, autism behavior analyst and bestselling author, Dr. Mary Barbara.
Mary: OK, so, Lauren, thank you so much for your time today. I'm so looking forward to this interview.
Lauren: I'm so happy to be here.
Mary: Yeah. So let's start out by you telling our listeners how you fell into the whole autism world.
Lauren's Fall into the Autism World, Avery's Diagnosis:
Lauren: So I fell into the autism world when my daughter Avery was born in September 2018. we really had some signs right away when I was pregnant with her. I didn't have a lot of movement and she was breech, so I had to have a C-section. Things got really bad, really fast. Even at a young age like newborn, she was just crying all of the time. We couldn't console her. So the main way that we could get her to calm down was by watching the television and nursery rhymes. So she would want to sit in her swing all day long and swing and watch these nursery rhymes on the television. So at the time I was in nursing school, finishing up my bachelor's degree and my husband worked. Second shift is a diesel mechanic and he would put her in the swing and she'd be happy all day long. And then I'd come home from school and four/five o'clock she would start screaming and being very upset until eight, nine, ten o'clock. And we would try switching formulas and giving Tylenol and gas. And we'd go to the doctors and they just kept saying it was normal, we would go to different doctors and they just kept saying it was normal. So we thought maybe it..
Mary: It was like three months, six months like right away or six to nine months or?
Lauren: This started like probably six weeks old, like right away. And my mother saying, like, this is colic. Yep. And first-time-mom being over reactive. Right. And everyone would tell me the stories about how my baby was really hard too, but this is like hours and hours. And I was just exhausted because I'd be at school all day. I worked part time and had all of this going on. So things were really hard. And she didn't handle daycare very good.
Mary: When did when did you start going to daycare? How old was she?
Lauren: She was actually six months old when she started. Before that, she was with family, so she did OK at first. And I felt like the daycare gave her like a lot of one on one attention. But the older she got, the more noticeable and harder things got. It just, you know, she really needed one on one and they couldn't really provide that. So they were really good. They kept the safe. They never kicked us out. I decided to take her out by myself and we had to do, what we had to do. So but after I had my daughter Skyler, the meltdowns really started. So my daughter Skyler is seven months old now. And when we brought her home to give much attention to her. But the meltdowns over any little thing like we said, no, or we changed her diaper and she didn't want that her meltdowns would last last three to five hours and we would have to sometimes restrain her because she was trying to hurt herself so bad. I was covered in bruises. She was covered in bruises, and we just knew something wasn't right.
Mary: And how old was Avery when your baby was born?
Lauren: She was about two and a half.
Mary: So at what point was it before your baby was born that you thought autism? When when were you thinking autism?
Lauren: You know, we didn't really think autism because the doctors always said everything was fine. And but we did have a daycare teacher that came up to us and said, do you have autism in your family and you think maybe she's on the spectrum. And that really caught me off guard. And, you know, at first I was really upset, but then I saw the kids would come up to me and say, here, Avery's mom is here. Here's her clothes and her shoes and things like that. And I'm like, how old are these kids? And they would say that they were younger than Avery. That was like wow, OK. Well, she started to talk more. So maybe we'll get there next week or next month. And it's just it's never come. So with these meltdowns, I took her to the doctor and the doctor again. I told her everything and she said, well, kids with autism don't like music and kids with autism aren't this social. And she ended....
Mary: Of course none of this is true, right? Kids with autism, in my experience for twenty five years, love music. Many of them love music, including my son Lucas. So, OK, so she was giving false reassurance again.
Lauren: And I felt like a lot of people were trying to give me that reassurance, like, oh, she's not that bad and oh, it's regression. You just had a baby that's normal. And at this point it didn't help me anymore. It actually hurt because it felt like I had to stick up for myself and say, you know, I'm not trying to be mean to my child. I'm just trying to get her the help that she needs. So. We ended up getting her diagnosed and they did a lot of the places were giving us three to six month wait lists, one place said 18 months, it was like woah, and I called everybody around and we actually got her in within three weeks of deciding that we wanted to get her evaluated and she was diagnosed with severe autism.
Mary: And that was right just a few months ago. How old was she when she was actually diagnosed?
Lauren: I think she was two years. And I want to say eight months. It was it was just in May, Cinco de Mayo, May 5th.
Mary: Oh great.
Lauren: Yeah. So then the evaluation went really good. The doctor was really great and didn't want to set Avery off and listened to us. And it was a really good experience.
Mary: And is this a developmental pediatrician?
Lauren: Yep. And she runs her own clinic and it's about forty five minutes from my house. So she's just kind of just it's a small clinic where a lot of these places are really big around us. So yeah, it was a good experience.
Mary: What we did do a podcast episode with Dr. Cheryl Tierney and we can link that in the show notes. She's a developmental pediatrician. One of the things she told me was that there are only seven hundred developmental pediatricians in the United States. And that's why one of the reasons why there's such a wait list for autism. The other thing that you didn't mention, which I'm sure was a big part of the confusion and the turmoil and the waitlist and the struggle is that she was basically quarantined and isolated during the year and a half of the most critical time when she wasn't around other kids. And you were a stay at home mom and you were trying to tiptoe around the problem behaviors and trying to, you know, getting different advice like, oh, this is just a reaction to the baby, which a lot of kids do have trouble with. So, I mean, I'm sure didn't help the situation now.
Lauren: And people would say like, well, covid, you just haven't had her out around people. So she's just not used to it. And I would say, well, this is kind of been our excuse. Like, we haven't went out because covid when really we went out because our daughter has meltdowns in the grocery store.
Mary: So, yeah. All right. So you then found my book and started reading it and you also joined my online toddler course and finished that. And one of the reasons that you're on this podcast today is because you recently wrote a really great Amazon review, which I read during the intro. And thank you for that. It really does help when people leave reviews and also helps people say this isn't a scam. We get some like one star reviews that all I'm after is money. And I just want people to join my online course. Meanwhile, producing free content like this podcast every single week and the low cost book that can be long or Kindle or free audible trial or whatever. So what what did you glean from what information was helpful from the book and my courses just in general?
Lauren: I really like the safety aspect of it. I just thought this was something that she would grow out of and definitely the safety, even if she had autism and didn't realize how we might always have to watch out like overprotective with her safety. Just little things like we had to lock up our knives because she would climb on the counter and pick the knife out. And so, like, we have nothing on our counter. She broke my coffee pot once. So the fence, how we actually have a fence, but she climbs the fence and we live by a pretty busy highway. So it's like a county road, but just little things like that with it's not just me thinking about safety, it's actually a fact.
Mary: So yeah. Yeah. And there is a safety chapter in my book and there's a safety bonus video. And we can we can actually link a safety bonus video in the show notes even if you're not a member of my online course, because safety is so important. And one of my previous clients, when I had him, when he was two and three at six, he wandered away from a neighbor from his his dad's house and he drowned in a neighbor's pool. And that was obviously horrible. And just some of the safety scares we've had, my clients have had, my online participants have had, and we can't be too careful. And that is something we're going to go over is really the number one thing that you have to do is to keep your daughter safe, as your figuring it out. So what are you currently struggling with, would you say? Is it still safety or is it other things? And just in two minutes, like what would be your big, if you could wave a magic wand?
Lauren: So say they're pretty good with. I think you say in your book about Fort Knox how it feels and it's kind of what it feels like here. But my biggest issues right now with Avery is that she's having a lot of meltdowns and problem behaviors. She gets obsessed with things like the fridge. She wants to empty the fridge or popsicles. She loves the popsicles, but she makes my floor so sticky all the time. She has a hard time, like she likes to watch the TV, but then she gets bored. And I don't know how to keep her engaged, you know, just things like that, so that the meltdowns and then how they can escalate from like a meltdown to an extreme meltdown of she's where she's delirious and it's like she's not even there. And pretty much I think it might be sensory overload or a lot of that coming in. So I think those are our biggest issues. We have a lot to work on. We don't have a lot of language. You can't really ask for help. She can say more and sign more, but that's pretty much it.
Mary: And more is not actually, it's it is recommended by ninety five percent of treatment providers in the autism world. But I don't actually recommend more. And I did a video blog on why more and please and thank you are not words I would work on. So but you know, it is very common. So we can link that in the show notes as well. And when I say link it in the show, there's going to be a lot of show notes here. So if you are listening and driving and and exercising and whatever you are going to want to for this episode, you're probably going to want to go to marybarbera.com.138. And that will have all the show notes because this is actually a hot seat call and we're going to talk about how to implement the four steps of the turn autism around approach to help Avery, who will be three at the time of this broadcast to help Avery and her mom really do the best that they can. And we're going to talk about what are the priorities, in what order, because there is so much she does have a fair amount of skills and she has a lot of needs. And so, like, how do we walk people through, whether you are just listening, whether you buy the book, read the book. I don't really care if you buy the book. I want you to read the book or listen to it. You can get it on hardback, Kindle, or audible. And we really want you to take these four steps we have. This is our third hot seat. We have done the first hot seat with Emily, who's a blogger for Mama to Kash's Voice, that was hot seat number one. We can link that. And hot seat number two was a few months ago, and that was Swethana with an intermediate learner, also a little girl. But she was like maybe five years of age. And now this will be hot seat number three. And this is our first hot seat of a parent of a toddler and who is taking my toddler course. So I think this will be good. But whether you've taken it or not, you can get all these resources, the assessment, the planning form, the sleep form, everything you need, everything we're going to talk about, you can get for free by going to turnautismaround.com, giving us your information. We'll send you these book resources. OK, so I do plan to do these hot seats so on a regular basis. And that's why I was excited that Lauren said yes and agreed to share all this really personal information. I mean, we are only sharing first names and that sort of thing, but it's still it is there are a lot of people out there that don't want to share their information. And that is, that is their right. And I respect that. But it is always great when we do have people who are going to be like, yes, I read the book, I took the courses and it's working. And I still have struggles with X, Y and Z. And we need to keep going as a community because you can probably attest to the our community on Facebook is is very active and it's parents, just like you, who are struggling. Is that what you see when you go in the community?
Lauren: Definitely, yeah.
Mary: Yeah. So to show us your your Amazon review or your podcast review or to show us what worked from the book, just go to Marybarbera.com/success. Tell us what you think and what you're still struggling with too. And you might be eligible to get a hot seat in the future as well. So, Avery, as you said, she is three now at the time of this recording, at the time of this broadcast, she was diagnosed with severe autism two years, eight months, and one of the things I want to say before we go through her assessment forms and planning is just because she got a diagnosis of severe autism and just because your first concerns were back at six weeks and just because she's having severe problem behavior and not talking much does not mean, in my opinion, that when she's eight or when she's 15 or when she's 20, that she will have severe autism and this will be your life. Like, I want to stress that you are taking action. She did spend a year and a half in isolation, but she does have strengths. And even if she wasn't saying a word, a peep, anything, nothing is set in stone. I did do a video blog way back, something like can you predict how a two year old is going to do at eight or 18? And my answer is no, you can't predict. I mean, of course, and I say this in my book that, you know, if you came on the show and she just had a little issue here or there and she was saying contractions and she was talking in phrases and she was a little bit behind and she never had a meltdown. Would her prognosis be better? Yeah, I think so. I think so. However, kids with very intensive treatment where their parents are really on board and fighting to get things turned around, they can have very good outcomes too. So I do know when Lucas started with his ABA therapy, there was another little boy, I'll call him Johnny, and he lived down the street. We shared a consultant that we basically brought in from Pittsburgh once a month. And if you looked at Lucas at two and Johnny at two, and you would have had to put bets on who would have done better, everybody would have picked Lucas. He was he was saying some words. He was going to typical preschool without a fuss. He by himself, he didn't have a diagnosis. He didn't have meltdowns. And then Johnny had like he wasn't talking and severe feeding issues. I'm not sure about meltdowns, but he looked more impaired. And Johnny just went to college, is driving and Lucas has moderate severe autism. And that doesn't mean my life is ruined either. So even if she does remain with moderate severe autism, your life can still be very fulfilling and happy and her life can be as well. But when I hear parents say or even parents of twins, where they'll be like, well, this twin has severe autism, this twin has mild autism, almost like let's put all our real efforts in, like, you know what I mean, whether it's like you can't tell now, how it's going to be so which I think I think that's more hopeful.
Mary: Yeah. That and and that the next two or three years are going to be really important. And so you are in a good spot to figure this out. OK, and then we also have covid, which if anybody says, well, it is severe autism and I haven't seen that get better or whatever, it's like we haven't had covered with 18 months of isolation either. So I would just say all bets are off, we have no crystal ball to look back. I look forward and there's no sense looking back and getting angry about, well, so so-and-so led me astray and they should have no know because a lot of kids are colicky, a lot of baby, a lot of toddlers do react to having a baby sister, you know, and that's like you do with the information you have. And when you know better, you do better. And I think that has been just from the brief time we've known each other over the past year. That seems to be your approach is like, you know, put one foot in front of the other and let's try our best.
Lauren: Right. You fall and get back up.
Step 1: Assess, Avery's Assessments:
Mary: OK, so the first part of the assessment, I think, is what I would recommend for the turm autism round approach is this one page turner autism around one page assessment, which really should only take about 10, 15 minutes to complete. You can do it online. You can print it out, fill it out. It is a book resource for free. So once this is filled out, another part of the assessment is to do a language sample for you can choose 15 minutes, 30 minutes or one hour. Lauren chose to do the language sample for one hour and she did say a few words and that is on the language sample form, which we will put in the show notes. So one thing I'm going to talk about the assessment in just a second, but the one thing about the language sample form that I wanted to just highlight. So Lauren has like playing with ball echoed ball, which is good because like, that's the context. That's great. She said hat byself when playing with potato head. So hat and potato head, great babble when putting parts on potato. Oooh. Laughing Running up to Poppy said hi. Singing Little monkeys jumping on the bed but mumbles can hardly understand. So said puppy, laughing on swing set, said wee going down slide, babbles in playhouse, babbles when running to puppy, and said puppy. So that's great. That's an hour. I know with Michelle who did podcast episode seventy eight she had two words and thirty three days later she had one hundred and eighty words and phrases. She's in chapter eight of the book. One of the tips I would say with the language sample is when you are doing that, it's good to give that extra information. But also as professionals are listening too and professionals and parents want to know how to do this best is I would also I went through and I highlighted Ball, I highlighted Hi, Puppy, and wee, I counted those as four words and then two sounds plus babbling and you could put babbling little monkey jumping on the bed because that shows me she can talk, she can actually talk in little phrases. But we just want any information on these forms to be as like clear, concise and graphable. So we know she had four words in one hour on baseline. Then even if you want to do a language sample once a month or once a quarter, we have graphical data. OK, the one page assessment and then also the selfcare checklist is part of the book resources, Dr. Mark Sundberg created this selfcare checklist as part of a supplement to the VB-MAPP and graciously allowed me to use his selfcare checklist as part of my book and as part of my online courses. And because I think it's just so important when you have a little girl like Avery who's three years old, you really don't really know where to start. Right, because she's got so many strengths and needs. And it's like and a lot of people I don't remember this advice a long time ago when Lucas got an IQ tested before he was three, then again at three, for four, and he was getting IQ tests that were showing him below 70. So he did get diagnosed with an intellectual disability. But one of the psychologists who did a test pretty early on, she said the mistake she sees is that people, parents like you and I, Lauren really heavily focus on language and like sitting in cognitive and colors and shapes and a lot of IQ and a lot of how kids are going to do in inclusive settings in the future. And a lot of their cognitive abilities actually judged on self care test like they're potty trained. If they're, they can wash their hands, if they can stand in line and wait, if they can brush their teeth. And this is important not just to boost an IQ, but for life. Right. These are life skills for all kids. And if you're behind, then in figuring out where you're behind, like she's behind on potty training. But is she, because she's not she's a newly turned three. So that's not as big of a concern as she doesn't want you to help her brush your teeth or she doesn't want to help brush hair. So that resistance to help and prompting is a big problem. So we can link that in the show notes. But that's basically what I found. This is not horrible for self care, but fights for self care tasks. She does drink out of a straw and an open cup, which are both great and toileting, she does not have the readiness skills of a twenty four month old, but I would really put that way on the back burner for now. I do have a chapter in my book on potty training and I would say that for her, potty training doesn't have to be completely on the back burner, but it has to be like you could put her on the potty twice a day, morning and night, or if she asked or if she looks like she's straining, if she will go there and sit without a fight for a big reinforcement, go for it. I would not at this point schedule her sits or take her out of a diaper or anything like that. You said somewhere in your paperwork that she's finally letting you change her diaper without a big fight. So, like, I would work on her tolerance for that for sure. So have you tried like, one of the things I recommend for kids who fight you changing diapers is to give them a reinforcer to hold or do something special with diaper changes. Is that what you did or how did you get her to tolerate diaper changes?
Lauren: So she's always been hard with diaper changes. So when she was old enough, like the phone, I would give her my phone with a little video. Now I give her the tablet or something. Distraction. Most of the time she's OK with diaper changes. If she has a bowel movement that's yelling and fighting, still just kind of depends on what mood we catch her. And so, yeah, but definitely the tablet helps.
Mary: So and the other thing I want to say about potty training and diaper changes is as your a registered nurse, I'm a registered nurse and I consider myself a potty training expert to some degree, as if she's not having a bowel movement once or twice a day. Is she having a bowel movement once or twice a day?
Lauren: Usually once a day. Sometimes she'll skip a day, but most of the time it's once a day.
Mary: Yeah. So that's OK. And even if she occasionally skips a day. But but you'd like if you would have said no, actually she only goes every five days or it's always a big bowel movement stuff that tells me she's constipated and then you really even if your child is three or four or five, you've got to deal with the constipation before you can really help with potty training. OK, so the assessment form, the one page assessment form, we would start right on the first column and we would start to go down here and the first thing that we would see is that she has severe autism diagnosed and that she has in-home ABA therapy eight hours a week, currently waiting on more staff. And this is also an issue is because you're learning through my book and my courses the term autism around approach, which is a very child friendly, positive approach. And we've seen a lot of our online participants. Seeking out ABA providers who know how to implement theVB-MAPP, how to implement the verbal behavior approach, and then more recently, how to implement the turn autism pproach which is hard to find. So when you were looking for ABA and there's waitlists for ABA companies and there's we don't take that insurance or this copays and we only doing clinic or we only do at home or we haven't ramped up after covid. Is that what kind of what's happening with your situation?
Lauren: Yeah in Wisconsin, we qualify for Medicaid if your child has a disability. So even though we didn't financially qualify, we still get Medicaid. So first we had to apply for that and then look for ABA. I got lucky and there was really no wait list. I'm out of the Madison area. That's what they're using. But like the Milwaukee area for our company has a six month wait. Just to start ABA. So I just happened to get lucky with that. So really we had to wait like six weeks so they can find staff and they're still looking. But we got to start right now. So.
Mary: And then you said somebody started and they quit right away. So then you go again and that's frustrating. And then this is all in home, right?
Lauren: Yep. All in home.
Mary: Yeah. So how are you and your husband feeling about having, you know, people come into your house and they're not paired with Avery, they're not trained in the turn autism around approach or like, how is that all doing?
Lauren: So I'm kind of used to people coming and going just because we've been having birth through three and everything. But I've been doing them like the calendar system that you recommend. And the beginning of July, we didn't have any meltdowns like one or two. And now since we started like three weeks ago, we've had anywhere between one on a good day or up to six a day of meltdowns. So you can really see that therapy has been really hard on Avery. So then we have that so then my baby is more upset when Avery is screaming and and it's just it's been a long couple of weeks, so.
Mary: And you know, are your providers. It's just hard to. Translate everything in my courses, in my book, and then you're the parent. How is that? We've done a couple parent and pro podcast. We had Kelsey and Amy on and we had Rita and Kristen on. We can link those in the show notes. But those are parent professional kind of teams that are working together who know my approach in our you know, it's hard for you as a parent too.
Lauren: Yeah, sometimes I feel like if I say, well, I learned this in the book, I kind of feel like I'm overstepping because as being a nurse, if I'm in a room and they're like, well, this will be better, I feel like, well, did you go to nursing school? So I really try and at least the first couple of weeks I just try to step back and kind of stay out of the way a little bit and let them do their thing. So I'm hoping they'll watch this video and you can give them some advice, right?
Mary: Right. I mean, you found people. As long as they're positive, open to learning, open to you know, even if I know it's frustrating, like people have said to me when I was working with kids one on one, which I'm not doing right now, and, you know, they'd be like, well, we want to do the peak assessment and peak programing p e, a k. And it's a great program. I have attended a three hour lecture on it. It's not that far fetched. I wouldn't do it for a little kid. I would do it maybe after the kid has done the VB-MAPP, in my opinion, because I know the VB-MAPP well, I know how to program with the baby, but that's what I do. So for somebody to be saying to me, well, I want to use the Peak Program was like, well, then you don't need me because I'm not I don't have 40 hours to learn the program, I have my program and I think a lot of professionals probably feel like that, like we have our systems, we have our protocols, and we don't have the manpower even to do our protocols, let alone to have all this new learning and new procedures. But at the same time, you as a parent are Avery's best teacher, an advocate for life, and you also have your other child and you don't want her to get upset. And you already have the data to show that we went from two meltdowns a day to six. It's like you can't just stand back and go like, oh, well, they're the professionals. So it really does put you, I think, in quite a bind.
Lauren: And I feel like, with Avery, she is so hard to interact with. Like, really all we're asking her to do is interact with us and do some simple puzzles and games. And she has such a hard time with that. So I think they haven't even been able to implement anything because she is so stubborn about not wanting to do anything at this point.
Mary: So have you been able to, like, get her seated at the little table and do the early learning materials, like on a daily basis? Have you been able to do that?
Step 2: Plan, Planning for Avery's Strengths and Needs:
Lauren: So I I've noticed that they don't really use the table during therapy as much. They kind of use the ground and then they kind of follow Avery around. So she doesn't really like to sit still. So I thought if I, I put a TV in her therapy room, so I found if I turn the TV on something she likes, she'll sit at the table and we can kind of get some things done and she'll sit there for a while. I think the longest she sat there was like ten minutes, which was our best run. So, you know, she speaks a little bit, but like the, you know, the shoe box program, she likes putting them in the box and she's starting to learn the cards and everything. So a little bit. I try to do it in the morning at least once and then again in the afternoon. So at least twice a day. I'm trying right now.
Mary: Yeah. OK, so one of the things and I do have a video blog, on like, why table time is key and it's in my book and in my courses and it goes against what Ninety five percent of autism providers are learning and doing, especially for young children, is they have been taught to the way to pair in and their minds is to follow the child around and follow the child's lead and to pair. But the problem with that is a child like Avery is going to waste a lot of time and we don't have a lot of time to waste because we want to turn things around now while she's young. And so pairing up the table and making for professionals listening, we basically combine natural environment teaching and table time intensive teaching. We combine it together. So it's basically very early learning materials that are more like what you would do on the floor, but it's at a table so that we can gradually mix in some matching, some puzzle inserts. But we have a strong reinforcement at the table. It's not like the old discrete trial drill. It's very light. We need five reinforcements at least we need a couple of edibles, a drink, an electronic, potentially some toys. But if you say I don't want screen time at the table, we have a policy the family is screen free or child can't have edibles. They have severe feeding initiative to feeding like none of these are in stone. This is what I recommend in general. And you even before we hit record, you said like she doesn't even like to see, like, little baggies of candy or whatever. She'll start obsessing or she obsesses with screen time. So then people are like, well, we won't use screentime, we won't use candy. But you got to use something, something that she likes. And then some of the free time can't be just free access to all this stuff. So I even said, like, if you're going to give her candy, break it all up in teeny little pieces and only put like five little pieces or ten little pieces in a little baggie. OK, that's what she's going to get. Then she's also going to get five little pretzels and she's also going to get a drink and you're going to give her sips and you go in, give her a sip, take it back like you need to control the reinforcers. If you're going to use bubbles, are you going to use a wind up toy? You're going to use the floater thing. You have all that stuff you are delivering that she's not just sitting there engaging with that while you're trying to teach the same way is she's roaming around. If she picks up a cow, and you say oh cow, cow says Moo, she doesn't say anything, she drops the cow. She goes, Look out the window. Oh, the therapist says there's a tree. She's not learning. If she's sitting at the table with these early learning materials, she's getting dozens, hundreds of trials of active learning. And we never want to force a child to the table, it's all pairing. It's all positive and it's all preventative. We work on increasing the good behaviors we want while decreasing the bad behaviors. OK, so from looking at this assessment, we want to go left hand column first. First need I see on the left hand column is safety. And so I put that safety on the one page plan, which is also in the book. Resources safety is the number one need. Now we actually have two planning forms that we're going to link in the show notes, one planning form that Lauren did, and that is starts with feed self as a strength has a nighttime routine. No crying at bedtime is a strength, according to Lauren. But I ended up redoing this because this is the way I kind of work. It's kind of like a cardiologist looks at an EKG. So I look at this form and I basically go down the left column of the one page assessment. I see the first need is safety. I'm going to put that right here. Safety. And since Avery has a lot of problem behaviors that are related to safety, I actually went to the very last portion of the one page assessment and put her major problem behaviors as her second need, SIB: self injurious behavior. Can't leave the house addicted to screen time. Aggressive toward seven month old sister. Lauren has this in her plan. It's just her plan. It was just more wordy and not kind of in the order that I would do. So on the strength side of my plan, I think the overall strengths of Avery are she can speak and echo 10 to 15 words. She can text several words with an echo. So you hold up the picture of banana and you say banana and she can say she can count objects up to ten. She has some delayed echolalia, clean up, clean up monkeys jumping on the bed, baby shark only parts and seems to change weekly. So those are all introverbals. And so that's actually a very good sign. I mean, these things, introverbals only started about eighteen month, typical development. And the fact that she can say multiple words strung together is a good sign. She can do puzzles. Excellent. She can be nice to her sister by patting her sister on her head or giving her hugs occasionally. And she now tolerates diaper changes. But her needs what I came up with, what I put on the planning form, our safety awareness, the major problem behaviors that I just covered, I think a big need from the self care checklist and from problem behaviors is I think Avery is very prompt aversive. So she doesn't want you touching her to help her. And I wouldn't see a need as not asking for help at this point. I would see a need as not tolerating help. And I just like more. I don't teach help, especially early. I teach what they need help with. So if they need help with a puzzle, I would want them to say puzzle instead of help. Help becomes just a very generalized mess. And a child like Avery could be like signing and saying more and freaking out. And if the item is out of sight. You don't know what it is, and so we need to really give her structure so that we're helping her mand for the item or the action that she wants instead of focusing on help. But I do think that a two year old or a newly turned three year old with severe autism, we we can't have it be like she just won't let me help her, you know, or she lets me do that. It's like no, we have to be the guide. And she might have when you were talking about her, like delirious kind of meltdowns and she really gets out of the state like I wouldn't.. I would also really recommend that you rule out medical issues that you rule out. You know, you say in the need column she's a picky eater and she has sleep issues. She could have a nutritional deficit. She could need zinc, she could need magnesium. She might need a medication to calm her nervous system down. She might be having seizures like we don't know. And so with your medical background as well, you understand? And it really is if you're sitting there listening, oh well we've ruled out medical problems, anybody listening or the professional might be thinking. Well, they said they've ruled out medical. I'm here to tell you, you are unable to rule out medical issues in a child like Avery, where any child that's not fully conversational. So we should always be looking into that. We have a couple episodes on picky eating with Dr. Keith Williams. We can link. And we also have an episode with a functional medicine nutritionist, Denise Foyt, that might be helpful. She has sleep issues. She wakes up often and melatonin is used. I mean, Lucas has been on melatonin since he's been three. He just turned twenty five. The studies show that it's OK, you know, but obviously, check with your doctor. It is an over-the-counter supplement. Some kids react poorly to melatonin. If she's napping at all, I would really look at making sure those naps stop by 3:00 p.m. because if if napping goes later, it will mess up your nighttime sleep as well. Potty training is a need, but I would totally put that on the back burner. I would say in addition to safety and major problem behaviors being, I'd say the number one thing that bravery is number two is not vocal demanding for things that she wants. Instead, she pulls in adult cries, grabs. And I think once you get her manding better her problem behaviors should go down. A lot of her problem behaviors are really defective mand, whether you know what she wants or not. And then there's some things like you can't do that, like we're not empying out the whole refrigerator. And so how do you say no, give her something else without her screaming. Right. You know, because if she starts screaming, that's not the time to negotiate. Well, we can't do that. She is young enough, though, that you can physically move her to a safe area. Until she calms down. And that's another reason why it's so great that you're doing this hot seat, because there's families out there with 10 year olds that are having meltdowns like her. And that gets I mean, you can't move them then.
Lauren: And actually, one thing that the therapist mentioned was because I just said, why do they hurt themselves when they ya know. And she was saying that it could be attention and that sometimes they recommend a helmet to protect her head if she would have the meltdown. Now, I know Avery would never let me put a helmet on her head. I can't even hardly put it up in a ponytail or cut her bangs. So and I know I've heard some things about you talk about helmets and in your book so.
Mary: Well, you know, and Kelsey, in episode three, our community manager, she was bringing her two and a half year old to a clinic and he was banging his head or her services up to a hundred times a day. And she was driving an hour each way and they were working on colors when he couldn't mand for things. So I'm not saying that. You should never consider. You should never consider a helmet, but I would never consider a helmet for a child. It's our job to keep them safe. I mean, for a three year old, you can. Put them in a room and be with them so that they're not banging their head on hard surfaces, and Kelsey was able to turn it around herself by following the four steps of the turn autism around approach. So, you know, if you're not following these steps, that's what you should do. It's all based on all the signs of ABA, all the signs of BF Skinner's verbal behavior and the turn autism around approach, which is based on twenty five/ thirty five years as a registered nurse, as a mom, as a BCBA with a doctorate. And you know, this isn',t for professionals listening out there, this isn't like a whole new thing. It's not like I'm saying you've got to learn the PEAK assessment or you got, you know, it's stuff you're already doing. Just you might not be doing it in the order that I would recommend. So, OK, so cannot mand vocally. And one of the strengths is that if you hold up a banana and you say banana, she'll say banana. When she wants something like she wants candy or something or she wants the iPad. If you hold it up and you say iPad. She'll say iPad, but if you just hold it up, what will she do? Just grab?
Lauren: Well yeah, or fall backwards and cry.
Mary: OK, so one of the things that you just told me that you actually got the verbal behavior bundle, which is after the toddler course, what I would recommend is the verbal behavior bundle. But you've got that paid for as parent training from your organization. Is that right?
Lauren: Yeah in Wisconsin, they have a child long term support waiver program, so any child, regardless of income, can qualify for that. So they I just said there's this book and this author that I really learned a lot from. And she has these courses and they paid for the first course and then the whole bundle, and the next bundle.
Mary: So that's excellent. So so anyway, the reason I'm asking is because this is covered in my verbal behavior bundle. So basically what you and the listeners out there can do is when you hold up things to start to use transfer procedures. And I think it may have touched on this in my second book. It definitely touched on my first book. But so you would say, let's let's do banana because it's just easier. OK, so but you hold up a banana. She wants the banana. She likes bananas. She wants to eat the banana. You hold it up and you can say banana once and then she says banana. But don't use the one more times three strategy in this case. Say Banana. She says banana. Right. What do you want? Or tell mommy. And then you could give her a BA and then she says Banana and then you give it to her. So you basically fade out your full prompt. I know in your initial plan you said you use the one word times three strategy. Yes. And once a child can echo something, OK, stop using the one who are times three strategy and you start using transfer procedures. So she wants the door open whether or not she's ever said the word, the word open before. Open, open, open. OK, so now she just said the word open for the very first time. Excellent. So open the door. Go out. But then when it's time to come back in, assuming she wants to come back in, if she doesn't want to do something, that's not the time to pair to teach these words. Then you say open. She echoes open. Maybe on the first time. Right. Tell Mommy again. Oh, if you could give her a partial prompt, open. Excellent. We're going to open it. You could try this with a box. You could try it so you could have target words of things she likes. And these are the procedures that open the floodgates to gaining what we call echoic control. So we do have an echoic control podcast. We can link to the show notes, but use the strategies. Once you get an echo, use things to transfer it. And then also when she's doing a puzzle, say she does the pig and the cow and or potato head. If you do the same things in order, you can even put the parts of the bag in a bag, the parts of the potato head in a brown paper bag. Right. And then you shake it up and you say, which one do you want first? And then you might even point to the hole where the eyes are and you might even say eyes, what do you want? And then she'll say, eyes. And then you dig in the bag, oh, what did you want? And you can try to trick her into being more spontaneous with her manding and then acting and always combine your mands and your acts as much as possible and do it throughout the day. Doesn't have to be like set targets. But the words that, you know, she can say also in the verbal behavior bundle, of course there is an intra verbal bonus video since she has some delayed echolalia like monkeys jumping on the bed. That would be good for her to do, too. Oh, OK. Just a couple more needs and we're going to have to really go fast here. Kind of taking a lot of time. OK, so she's more receptive. Language does not imitate or match, and she has put social and play skill deficits like pretend to play, pretend, play and really high play is going to come later. Just like potty training. I wouldn't focus too much on that. There is Chapter seven of my book which covers that imitation and magic. Definitely. You want to be teaching. And since she has some puzzle building skills, I think imitation and matching will come. Did a podcast on imitation recently with some good videos in there. So the overall. So that's the assessment. So you did the videos language sample, the one page assessment, self care checklist, and you may be listening, thinking, oh gosh, there's a lot of work, but really that whole thing could take like an hour total for everything. I mean, is that. You would recommend it, I like really...
Lauren: And I think it also helps you kind of figure out where your child's at too. So before I got all of these problems and this kind of help me knowing where my problems. So, yeah.
Steps 3 & 4: Teaching and Taking Data
Mary: So then the one page plan is just the strengths and the needs. And then we make a plan, which my plan, which I summarized is very similar to the bottom part of your plan was keep Avery safe, use locks, gates baby sister in the playpen while you're out of the room. Use ABC calendar data for all major problem behaviors. You're doing that, use the sush and give procedure and do not offer reinforcer or give reinforcement when crying. She needs to learn that crying is not going to get it. Talking will get it when she's calm. Desensitization procedures for self care tasks, feeding and prompting. You said you got like three quarters of the way through the book and then you joined the course. So the very second of the last chapter is all about desensitization. So I definitely try to finish the book, use the one word times three strategy throughout the day. But for words she has said and the strong reinforcer use those transfer procedures which I outlined start table time sessions and and I would say four for the staff that's coming into your home, it would be really good for you to kind of be almost like the lead therapist to say, OK, let me sit down with you with Avery and you're the trainee. You're going to sit down with us at the table and you're going to offer reinforcement or hold up the pig. I'm going to model it and you're going to do it. And there is parents out there like, oh, God, I just want ABA to come in and do it. But remember, you're the captain of the ship. You're the best teacher, an advocate for life. You are Avery's voice at this point. You know how to turn it around and you can help the professionals who will help not only Avery, but other kids. And so we are all in this together. Don't think like, oh, the professionals are going to get mad or we need to all work together and then limit the. She's still not really responding to her name. So limit the use of her name during the day except when you're working on it. So when you have a strong reinforcer, say Avery, say close and offer her reinforcement right away and it should get better. And OK, so that's the assessment and the plan. There's two more steps to the turn autism around approach, which is teaching and evaluating using data. So with teaching, with the teaching step obviously it's all throughout the course, all in my book about the steps to teaching. And it's it's a lot more I mean, that's a lot of stuff that we just covered. But it's we can't just in general, I think the more help you can get, the more ABA therapists in there who are all kind of treating Avery the same, doing the same things, giving her the structure she needs. You know, if you can get a church volunteer or a mommy's helper or financially, if you can get people in there, they don't have to be necessarily trained therapists just to keep her busy, keep her safe, keep her motivated, make sure you remain the captain of the ship, no matter how much therapy you get for, like, prompt avoidance and stuff. I would make sure that she really wants the item. So for bubbles and that sort of thing, or if it's a wind up toy and she really wants it to flip around, you know, she wants it to kind of that's the time to be prompting her because she wants it to go. And she's really unable to do it herself. You know, for teeth brushing, you might want to investigate like an electronic toothbrush or a toothbrush that sings, and you might want to do it not with toothpaste, maybe at the table. Like, let's practice brushing your teeth real quick. Let's count to ten. One, two, three. Make it fun. Make even vibrated on the outside of her cheeks, you know, just pair it up. So that is not such a fight for her hair brushing, you know. I mean, she's an adorable little child from the videos, you know, but she might you might want to think about cutting her hair a little shorter. So it's not such a fight or using detangler anything that we can prevent the struggle and prevent any sensory issues that she's probably having. I wrote down here. I didn't know you moved up to the verbal behavior, which you did. Finish the book and make sure that you pair the professionals in her life with =the approach that you want to use that you know, is working. It will work in the short term and the long term. And then the final step of the turn autism around approach is taking easy data. You're already using the calendar data system, which is explained multiple places in the book, the course, the podcast. And also keep a word list of her pop out words when she's saying it. Maybe you want to do a language sample every week, or maybe once you get a therapist sitting at the table, maybe you can even have them take data on her words daily. And that will be super motivating, not just to you, but to the professionals as well. And then if she has a word list, you could alphabetize them and keep them on the refrigerator, in her therapy book. So we're all on the same page. We have some, with some places we have No. One words which are clearly articulated words and No. Two words. And so everybody's on the same page. Oh, that's how she says she says Nana instead of banana. OK, we're still going to do that. And everybody's going to accept that and we're going to be working on banana. And just in general, when you're taking like when you made the language sample, just take data that can be graphed and any data that you're taking or that you're ABA therapists are taking or if you're professional there that you're taking, make sure it's not just wasteful data like that it can be graphed, that we are motivated by it. Words heard is a great motivator. Minds is a great motivator. You know, tantrums, meltdowns, whatever you're going to call it on your calendar data that to go down near zero is a great motivator. Tolerance for food, tolerance for lots of things. And I think you're definitely on the right track. I know I talked, I feel like I talked most of this. So hopefully you bear with us. But she has a ton of strengths. It is very good thing that she has you as her mom, because you are highly motivated and you're willing to share with the world the things that you're learning and the things you're still struggling with. And these are very common. She's in a good place. There's a lot of hope for her future. And whatever happens, I know that you are going to really continue to be her best advocate no matter what. Any final questions before we wrap it up?
Lauren: So I guess my one of my main questions is that definitely with covid and after the diagnosis, we kind of stopped bringing her out into public. And I know we have a lot of things to work on. So I was just wondering what your opinion was, if we should start doing that again or if we should try and get some of these behaviors under control or what you recommend?
Mary: Yeah, it's really tough. And I think a lot of families are struggling with the exact same thing. I wouldn't put her in anything structured. I wouldn't put her with people that don't know what they're doing. But once you get ABA therapists in place and that are good, OK, with ten minutes of table time on their own, delivering reinforcers and getting her to comply, and you might think, like, what does that have to do with eloping from a playground? It has a lot to actually do with it. One of the reasons that Kelsey said Brentley stop banging his head on hard surfaces and she could take him out of the house without a leash and a harness was because she learned his reinforcers. He got used to just general sitting and attending and awareness and all that kind of stuff. So I think I would venture out to potentially an enclosed little playground on times when there's no other kids there with a therapist, with an extra pair of hands, maybe even with if you could leave your your baby daughter at home so that it's you and the therapist going places with your daughter, maybe venture into a grocery store buy three things and have her, you know, eat animal crackers in the front seat of the, you know, the grocery cart or whatever, but don't go in there for an hour long shopping trip. So venture out, but with help, with support and make sure you keep her safe.
Lauren: OK, that's great.
Mary: Yeah. OK, so to wrap it up, we always end the same way. It sounds like you've had a really stressful year or two. So part of my podcast goals are for parents and professionals to be less stressed and lead happier lives. So do you have any self care tips or stress management tools?
Lauren: So I think my biggest thing is that I'm lucky enough to have a family that is supportive. Sometimes I feel like I don't want to just keep asking them to come help. But the other day, Avery had a really bad meltdown, I couldn't take care of my youngest. So I called my sister and she ran right over and my parents live right down the road. I could call them. So if you have a village behind your house, that. They want to help. So yeah they're my people, so I'm lucky to have them.
Mary: So I think that's great advice to lean on people. And if you don't have family in the area, you know, friends, other support groups, there's people online that are in your exact situation. And then also, if you're a member of a church or some kind of organization, even the Boy Scouts or Girl Scouts, they have that volunteer hours, college, college kids sometimes can do it. You need observation hours or so. Just reach out as much as possible, get help. I think that's a great, great tip. All right. Thank you so much. It's been a real pleasure getting to know you better, Lauren, and I wish you and Avery all the best.
Lauren: Thank you so much. I really am so happy to have this opportunity to say thanks over Zoom. So thank you for all the education you've given me.
Mary: Thank you. All right. Have a great day.
Lauren: You too. Thank you.
Mary: And for all the resources for this podcast, remember to go to Marybarbera.com/138. We're going to have all of Avery's documents and you'll be able to see kind of Lauren's plan and my revised plan. And really, hopefully this is giving you a really good start to to working with any child to just put everything down on paper and get through the four steps to make a better plan.
Mary: If you're a parent or professional and have benefited from the information you learn from me on this podcast or from my Turn Autism Around book or from my online courses, I would love to hear about your success. Please go to Marybarbera.com/success and fill out a very short survey. On the survey you can upload your book or podcast review or you can share a picture or video and tell me how your life has been impacted. I will personally review everything submitted and I would love to hear from you. I'm on a mission to turn autism around for millions of children around the world so that each child can be as safe, as independent and as happy as possible by writing a turn autism around Amazon or podcast review. And by sharing your story with me, you'll be able to help others find out about the turn of autism around resources so they can start turning things around, too. I can't wait to hear all about your success at Marybarbera.com/success. Thanks so much.
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