We have recently reached 750,000 downloads of this podcast since its launch three years ago. In celebration of that and to continue educating listeners, both old and new, I am rebroadcasting classic episodes that I reference frequently on the show. Today’s episode is a look back at episode 3 with Kelsey General and her journey of navigating autism with her boys, Brentley and Lincoln.
Early Signs of Autism and the M-Chat
Like many parents, Kelsey tracked her son Brentley’s development from the very beginning, watching for milestones and paying attention to questions during well-check visits with her pediatrician. It was with this diligence that she began to see signs that something bigger was going on with her son. A hospitalization and regression at 13 months ultimately led Kelsey on a journey of over a year to receive the right referrals and receive a diagnosis for her eldest son. With the help of a friend, she administered the M-Chat to Brentley, and she was able to get the answers she needed that secured a diagnosis and allowed her access to funding for support.
My Toddler Bangs Head on Floor When Upset
On this show we discuss a variety of signs of autism but the first and foremost symptoms and behaviors that need to be dealt with are those associated with safety. As a toddler, Brentley was banging his head upwards of 100 times a day. We cannot begin to work with any other skills until safety concerns such as head banging, escaping, and severe tantrums are addressed. Kelsey shares her experience working with a behavior specialist and clinic that did not address these critical needs. With this approach, therapy was just not working for Brentley. After finding my courses, Kelsey knew what needed to be done and when her clinic would not consider the approach that was right for Brentley, she began administering therapy on her own through her education of my courses.
Parents of Children with Autism Can Reduce Stress by Learning How to Help
Kelsey became I as I like to say, “The Captain of the Ship”. Equipped with the tools from my courses, videos, online community, and book, she has provided meaningful and impactful therapy for her son Brentley and her youngest son Lincoln after he received his diagnosis. Today she works with a team of behavior analysts that support her and her children through ABA and both of her children are able to attend daycare with varying levels of support. Kelsey urges parents to get educated and help their children. Ask the right questions and maintain involvement in your child’s therapy because you are their teacher and advocate for life.
I hope you enjoyed this look back at episode 3 of the Turn Autism Around podcast. Be sure to stay tuned for next week when Kelsey General joins me for a much anticipated update on herself, Bentley and Lincoln!
Kelsey General On The Turn Autism Around Podcast
Kelsey is a single mom to two boys, living in BC, Canada. In 2016 her oldest son was diagnosed with autism at 25 months old. After learning he would not qualify for the support he needed, Kelsey began her journey of learning how to help him. Since then, Kelsey has continued her education in the field in order to provide her children and others in the community the direct intervention they needed. Now, Kelsey homeschools both her kids with support from a team of consulting professionals, while also working with other families providing behavior analytic services and parent coaching services. Kelsey and her boys enjoy spending their free time exploring and in nature hiking, biking, camping, and snowboarding. You can follow her adventures and learn more about getting children with autism outside safely on her Instagram page, www.instagram.com/littleadventurefamily.
- What are the early signs of autism?
- Is it important to know developmental milestones?
- What is the M-Chat?
- What to do when your child is banging their head.
- What to do when you have concerns about your child’s therapy.
- Why addressing safety is the first step in turning autism around.
- How to find the right ABA providers.
- How you can become the captain of your own ship.
Kelsey General – Turn Autism Around Podcast Transcript
Transcript for Podcast Episode: 175
Failed M-Chat Score, Toddler Headbanging, and Parent Led Therapy with Kelsey General
Hosted by: Dr. Mary Barbera
Guest: Kelsey General
Mary: You're listening to the Turn Autism Around podcast episode number 175. We are doing something brand new. We just surpassed 750,000 downloads in the past three years since the Turn Autism Around podcast was started. And I just decided that I was going to bring up, I'm not sure the frequency, but I'm going to bring up classic podcasts. Some of the podcasts that I recommend very frequently to replay them, to rebroadcast them in a different way with a new intro. And in this case, we are rebroadcasting podcast number three with Kelsey General, who is a single mom of two living in Canada. That was the case back in late 2018, when we recorded episode number three, and at the time she was also working for me a little bit for our program, our online courses and community, and she still is working for us. So today we're going to replay podcast number three. Right now you're going to listen to it. And it really talks about how Kelsey's first son, Brentley, was showing signs and diagnoses, and then her second son also started showing signs. It talks about what she hopes for in the future and just a lot of great great gold in this one. So we're bringing this back. Listen to this one. And then next week for Podcast 176, I'm bringing Kelsey back on the show to give us an update now that her kids are four years older and still doing very, very well. So hope you enjoy this classic rebroadcast of podcast number three, this is Podcast 175 with Kelsey General.
Narrator: Welcome to the Turn 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 Mom, Behavior Analyst, and bestselling author Dr. Mary Barbera.
Mary: Welcome to the show, Kelsey, I'm so excited to have you on the show.
Kelsey: Hi, Mary. Happy to be here.
Mary: OK, so let's start with when you started feeling concerned about your oldest son, Brentley's development.
Early Signs of Autism in 18 month old and M-Chat Form
Kelsey: Yeah so, I started being concerned pretty early about Brentley's development. He was probably about six months old, and I remember going to the pediatrician and saying, I'm pretty certain he's deaf. I walk into a room. I say hi to him, I talk to him. He doesn't respond to any sound. And the doctor also noticed this at the appointment, and we began hearing tests and all of the hearing tests were normal. And so we kind of forgot about that. He continued to develop. He gained gross motor skills, pretty young. He started walking at 10 months and then he started signing things like dog and saying dog at 10 months. And so I kind of stopped worrying until he was around a year old. I think he was, and he was hospitalized shortly after his first birthday when he stopped walking and had a spell where he was totally lethargic for about a week. And after that, kind of everything changed.
Mary: So he was about a year old when you started seeing...
Kelsey: Yeah, well, he was 13 months, 13 months when he was hospitalized. And then after that, the regressions started.
Mary: And did you have any background in development or, you know, did you have any education on what milestones to look for or that, you know, you even had to keep track of?
Kelsey: No, we didn't. I didn't have any education in child development or anything like that. However, I had friends who were in the early child development field and in Alaska, they start pretty early at, well baby check ups, doing developmental screenings. And I just looked online and found out the developmental milestones and just always kept track of that.
Mary: Did you, do you know what they did? What did they do like an M-chat with those 20 questions?
Kelsey: Yeah. So I'm the one who originally did the M-chat, but earlier on when he was younger, they did ASQs at every appointment. So.
Mary: So those are so those are really, yeah, getting looking at development. So I guess back in, you know, two decades ago when I had my boys, there really was very little standardized developmental testing at the well visit. So it sounds like that's been an improvement over time that they are screening kids a little bit earlier and a little bit more standardized using things like the ASQ you. I'm not sure what that stands for. And then, you know, the M-chat that I talked about in episode number two, which is the modified checklist for autism in toddlers, which you can print out. So you started to see another bigger regression after he was hospitalized and how were you feeling at that time?
Kelsey: Well, when the regression started, I was pregnant with Lincoln and I was in a pretty high stress situation and the regressions weren't overnight, so it was a slow regression. So during that time I was mostly feeling confused, like, wait, did he have that skill yesterday? Like, wasn't he just saying, dog, now he's not saying dog anymore. But then maybe the next week he would say dog, and then it would go. It was a really slow regression. And so, yeah, I was feeling pretty confused. And then I'd see things and I'd start to worry, and some days I'd be really worried. And other days I'd be like, Oh, I'm just crazy. So there was a lot of self-doubt during that time.
Mary: Yeah, it's funny because, you know, I was pregnant with Spencer when Lucas started to have some regressive, aggressive symptoms and I completely missed it. I wasn't even confused or concerned. I was just oblivious because I was pregnant. And his, you know, Lucas's regression was pretty slow, too. So what were the symptoms when you say his regression was slow? But but what? So he was losing some words you said or not seeing them as frequently anything else that was concerning.
Kelsey: Yeah. Well, like I said at the beginning, I didn't really notice and he was still gaining those impressive physical skills enough so that he was still passing these questionnaires of the doctor's offices because he just seemed like he was visibly looked like he was pretty advanced. The first thing I noticed during the regressions was in pictures. Actually, he used to always look at the camera and smile and respond to his name when I would call for him, when I was taking pictures like moms do. And then I started to notice in pictures that he was withdrawn. He never smiled in pictures. He was always looking off. And that kind of. So he his engagement went down a lot. His response to his environment went down. The tantrum started where he would flop on the ground and hit his head and things that he used to enjoy doing. Slowly started to become really difficult for him. We did a lot in the community with large groups of people hiking and baby groups, and he began to scream like constantly at all those events.
Mary: Did you think at that point like this is like the early terrible twos or were you like thinking like, he's just irritable? Were you thinking that? Yeah, he had autism at that point? Or were you thinking that it was something else or?
Kelsey: Well, I wasn't. I definitely wasn't thinking autism at that point. Exactly at that point, I was kind of thinking, Yeah, he was just difficult and everyone around me to was like, Oh, he's just going through a phase, you know, just don't worry about it. But I remember those pictures and I remember probably almost weekly like sending them to one of my friends and being like, It's different, though. Look at this and look at this and different like something has changed. And I didn't really know what at that point. And then when he was around 18 months, that's when I started to get more concerned. And my friend, who is a BCBA, pointed me in the direction of the M-chat and said, This is a screening tool that you can use.
Mary: OK, so you just so happen to have a friend who was a behavior analyst and she gave you some direction to go and look at the M-chat.
Kelsey: Yeah. Yeah, she was. She's one of my closest friends, and I didn't really know what she did until I got more involved in autism and what was happening. But I knew she worked in early childhood education for a long time and knew about development. And I was watching her son and I'd ask her a lot of questions and she answered a lot of them for me and was really helpful in getting me and helping me advocate to get Brentley into a developmental pediatrician early.
Mary: So just to catch anybody up that hasn't listened to episode number two, where I do talk about the M-chat, it's a list of 20 questions. Yes or no is the response the parent can fill it out. You can download it for free and we'll link that in the show notes. And it's questions like Does your child point with his index finger? Does he like to be bounced on your knee? Does he show you things, bring you things to show you things? So how poorly did Brantley do on that chat? Do you remember?
Kelsey: Yeah. He scored a 14, which is high risk, high risk. And so he basically failed everything and so. And he was already in early intervention speech therapy at that point. But they had not told me that I should seek an autism evaluation, so I gave that to them. And then I went to the pediatrician too and gave that to them as well, saying that I needed him to get a referral to be assessed for autism.
Mary: And had you not known of your behavior analyst friend or not realized that you should do the chat and the M-chat, like, was anybody else concerned or was it all just, you know, being pushing it?
Kelsey: It was me pushing it, and thankfully I did know by behavior analyst friend because she told me that about a developmental pediatrician, because when I took the M-chat to the doctor's office, they had a behavior specialist on staff who came in and, you know, watched Brentley. And again, he looked advanced. He looked like a happy little boy. She said, Oh, well, the doctor won't accept referrals till he's two and a half. And she was talking about a different doctor. And I said, Well, my friend, who is a behavior analyst, told me that this developmental pediatrician takes children very young, and she didn't want to send the referral in. And basically, I had to call the developmental pediatricians office directly and get them to OK, the referral. So again, if I didn't know my friend, I mean, I would have just been like, OK, I guess we sit and wait till he's two and a half, and that would have been awful.
Mary: Did your friend tell you to read any books or did she tell you that about ABA and that kids could recover? Did she give you any information about what could be done about autism if he was diagnosed?
Kelsey: Mostly, she told me that it was important to seek a diagnosis early because the earlier the intervention, the earlier he can get insurance approval for the 40 hours of ABA hat insurance recommended that that was the best option. I believe in those early days I used to. She didn't give me any books, but I used to scope out her library. And I think one of the ones I brought home was the Early Start Denver model, and I read it and tried. I didn't know anything at that point, tried to do some of the things that I read in it. And at that point, yeah, not much of anything in that worked. He was just so withdrawn and I had no instructional control at that point.
Mary: And so, did the developmental pediatrician....
Kelsey: It almost made me feel worse. I was like....
Mary: Yeah. So when you called the developmental pediatrician, you were whisked in for an evaluation. You had to wait right?
Kelsey: Yeah, they basically just told me that, yes, they would accept referrals at the age that he was. And so I had to go back to my pediatrician and get them to write the referral and saying I, I talked to the doctor and he said he would take the referral. But yeah, it took until he was twenty five months, and this was when he was eighteen months that we got the referral.
Mary: OK, so just under a year. Yeah. So during that year you were doing what?
Kelsey: Yeah, well, during that time I was dealing with I wasn't doing that much with him. I mean, I was staying home, trying to live a normal life, trying to read these books and do as much as I could, but I really didn't know I was in a high stress situation at home. Things were getting worse and worse there. And so while we were waiting for the evaluation, I actually left my ex and became a single mom and moved in with my behavior analyst friend. And yeah, and started kind of planning the next stages, but I knew I wasn't going to leave Alaska until he had his evaluation. So all the court dates happened. I got full custody of my kids and planned to leave the country, but we waited until diagnosis day and then we basically left the next day after he was diagnosed and moved back to Canada.
Mary: OK, because you're a Canadian citizen?
Mary: So you were...Your life was basically on hold waiting for that diagnosis day.
Kelsey: Yes, and I wasn't doing much at that time, because at that time, I mean. My behavior analyst friend ethically couldn't. Support any therapy with Brentley other than giving me some resources. And I was just under the impression that I just needed to wait to get that diagnosis so that he could get 40 hours of ABA. I just thought that was when my hands were washed clean of anything. I, you know, which is funny now, but I thought, Oh, that's the end. Once I have the diagnosis, it's done. It's fine. That's all I need to do. That was my most people say that they're upset on diagnosis day. I was relieved. I was like, OK, now we have this diagnosis, we can go get ABA. We can go back to Canada. Court's done. I was thinking it was good, but.
Mary: OK, well, you move, so you move back to Canada....and then ABA miraculously started right?
Kelsey: I wish that would be nice. No, in Canada, the system's very different. Every province is different. But in British Columbia, children who are under six get twenty two thousand dollars a year for the parents to basically do whatever they want with under some guidelines. But you can't access that funding until you're a British Columbia resident for three months. So during that time, I still, you know, we were adjusting to new life here. He did regress again. He basically started just screaming as his form of communication, and he stopped eating a lot of foods. He was already pretty restrictive in his eating, but it got worse when we moved to Canada. There was lots of different brands. I couldn't get Jimmy Dean Sausage, which at that point was what he really enjoyed. You can't get that in Canada. So we just waited. I had to pay for a private psychologist to confirm his diagnosis so that we would qualify for funding. But once all that wait was over, we signed our funding agreement. We got the twenty two thousand..
Mary: Then ABA miraculously started right?
Kelsey: Well, I guess it kind of did, yes, but it was not 40 hours. So twenty two thousand dollars does not go very far. If anyone's wondering, it qualified him for about six hours, six to eight hours a week of therapy. Yeah, and there was no behavior analysts in my area. There were a couple of programs saying they were autism programs and that they were helping these children. But I knew from my history that I needed a board certified behavior analyst that was really important to me. And so I found one about an hour away. We met, I interviewed her the best qt that time. I knew how seemed OK. And then I started driving him an hour, a few an hour each way, three or four times a week to this. It was a room and a community center, and it was a type of preschool program where each child had a one to one.
Mary: OK, so how old was he at this time?
Kelsey: Well, just under two and a half.
Mary: OK. And then you also had Lincoln your baby, they're what, 18 months apart?
Kelsey: They are 18 months apart. So he was I mean, he wasn't even one yet. He was just about one.
Mary: OK, so when you started driving him to the clinic at two and a half after, you've been concerned, I mean, you were concerned that six months then you were really concerned after a year. Now it's your two and a half. He's two and a half. You're driving an hour each way, not for 40 hours of treatment. For eight hours of treatment at best a week plus the hour each way commute and your baby. And can you describe Brentley's behaviors at that point?
My Toddler Bangs Head on Floor when Upset
Kelsey: Yeah. At this point, things had gotten pretty bad. He. Essentially had a lot of tantrums at any time, you know, any time a routine was different, any time he didn't get his way or we had to clean something up, he would flop to the ground, throw himself back and slam his head on hard surfaces and he hit it hard. I mean.
Mary: How many times a day would he hit his head?
Kelsey: I mean, up to a hundred times a day, sometimes more. I mean, it would depend on the day and the kind of stressors that were happening for him. He still wasn't communicating very much.
Mary: So he had some words.
Kelsey: He had some labels. He had some labels.
Mary: Did you know how to teach him language at that point? Teach him new words?
Kelsey: No I was trying to find ways, but no.
Mary: And how was it because you were a single mom at this point? Mm-Hmm. You had your baby. You had him, you know, and you like to go hiking and go out in the community. So how can you describe what that was like, right when you started ABA treatment?
Kelsey: Yeah. So that was scary. It was hard to take both out. Brentley would need to be have a backpack on with a leash because he wouldn't hold my hand. He would often bolt away once when we got to therapy. Actually, he decided he didn't want to go and I didn't have him on the harness because it was like a 10 foot walk into the building and he ran three streets over like, wow, he was gone and I and I could see him a lot of the time. But he was, you know, I didn't really expect that to happen and outdoor activities. I would normally either wear him in the park on my back and Lincoln on my front, or I would have him in the harness. But even that sometimes didn't work. I mean, he would flop to the ground like we would call it the wet noodle, and we couldn't even walk into a store from the parking lot. Luckily in Alaska, they they gave me a handicap sticker so that we could be closer to the doors because Brentley is not a small guy. He never has been. And so trying to manage dead weight of an over 40 pound kid at this point was very difficult.
Mary: OK, so the ABA clinic that you were driving to that did have a board certified behavior analyst, there was. Were you seeing a lot of nice gains with that or what? How was that working?
Kelsey: No, there was not very many gains with that, so his first assessment they did there, they did the Abels assessment, which is a type of verbal behavior assessment. He had about one box filled, I think maybe not even that. I mean, he didn't respond to people. He didn't respond to anything. And then they began teaching him colors. And we're trying to teach him through play and building and having him engage with different toys, which actually Brentley has always been very good at. He's good at engaging with objects in his own way. So it was really just allowing him. It was really almost just like babysitting and trying to teach them skills that were pretty beyond him. I mean, I'm not sure why you would teach a child who can't even request what he wants. Colors.
Mary: Right. So and he was still having the major problem behaviors. They were even coming to your home a little bit, but he was still they weren't really helping you to solve this immediate safety issue of you even going to the grocery store without major safety issues.
Kelsey: No, no. They, you know, and the behavior analysts came once and watched me at the store with him. And but really again, no strategies that were that were helping or that were working. It was just difficult to watch, and it was frustrating to watch because they didn't really want me that involved either, and it was like, Well, I'm the one who was with them all the time. I need to know, you know, what's happening?
Mary: And so they just wanted you to drop him at the clinic and go and busy yourself for a few hours while they taught him and then to come back. And so that which is common in schools and in clinics, you know, they can't have the parents sitting there the whole time because, well, you also had a baby with you, and that would be very disruptive. But there is that fine line between, like how much parent involvement is needed, especially when you're having all these safety concerns. So about that time, you found my online course and you began to take it. And you? So how did you feel once you found my course and started watching that?
Kelsey: There was mixed feelings. There was happiness that I found it because I was learning a lot and it was all clicking, it was like, Oh, OK, now I know I can do this. But then there was intense anger and intense frustration, which. And not a you obviously are at the courses, but who is that? Were you mad at? I was mad at the programs in my community for, you know. Not providing this kind of information to parents, I was mad at the program he was in that even though they were verbal behavior that that they weren't teaching him like this because it seemed so simple. And then I got frustrated when I tried to show them your videos, when I tried to educate them and try and get them involved in what I was learning, and they kind of shut down at that point.
Mary: Right, and they pretty much asked you to leave? Asked, You like, yeah, we're not going to do it Mary's way or the way you think will work. So, you know, you can go elsewhere and find therapy. Is that what they basically said?
Kelsey: Yeah. Basically, I wanted I started asking, I was like, OK, I can leave Lincoln here. I want to come. I want to see what's happening. They got mad once that I took notes and it wasn't. It was like notes of things to ask the behavior analyst like, why are they doing this? Like, Can we do it this way? And why are they working on this goal? And then everyone got upset that I took notes. They started saying I couldn't attend the center anymore. They didn't want me there. And that if Brrntley was to continue one, I couldn't come or be involved. And he had to wear a helmet because he was a liability.
Mary: And so that point, you just decided to to to withdraw him from that clinic.
Kelsey: Yes, they weren't doing what was working for us at home, they wouldn't listen to what I knew as a mother was helping him...
Mary: Because you started to do your own ABA therapy just using my courses. And how is that working? Was that working?
Kelsey: Yeah. I mean, it was hard at the beginning. I'm not sure if you remember some of my early posts in your Facebook group, it was hard to get him to sit at the table. It was hard to get him to do anything but run away from me. It was hard. But as I learned more and learned more about, you know, instructional control and how to get him to want to be with me and work with me, that's that's the real turning point. That's the real turning point for Brentley that moment once we figured out how to work together. And so once I started doing that and I started realizing, Oh, we can teach this kid once we just get him to want to learn. And that's when I started to try and tell that to the program and say that I didn't want to use, you know, traditional escape extinction and all that kind of stuff that they were using. Yeah, they weren't that open to it.
Mary: And it only really took you maybe two months to realize that there was a better way. Right? I mean, you've been with our courses for, you know, two years now, over two years, but it only took you about 60 days to realize like, Wow, I can. Yeah. And even though when you had funding to pay for that. And when you pulled him out, it was just you. So you weren't even using any of that funding, right?
Kelsey: No, I wasn't using any of that funding. I was using about twice a month. I had a speech therapist come in and work with me on some play goals with him. But but not like language building, just some play goals. And that was about all I was spending my funding on. Yeah, right.
Mary: So, so after about 60 days, you saw what kind of changes your he was sitting now and he was.
Kelsey: The biggest change for me is he wanted to be around me. I could not only teaching him at the table, I could also play with him more like he wasn't just running away from me. That was big in our relationship, I think, because before that I was like, Well, this kid wants nothing to do with me or anything about me or the environment. So that was a big change. And also a big change was his receptive language, which is his understanding of language. And he didn't really understand anything I said before or didn't show that he did. He may have, he couldn't. Like, you would tell him to touch an apple when there is only an apple in front of him and he wouldn't touch it, he would look at you like, I'm not sure what you're trying to say to me. And so he started following simple directions, which, as you know, with two young toddlers, was really helpful. He started to get better outside, not flopping as much. I don't know when I say he got better, I got better at knowing what to do. And so we didn't deal with a lot of those problem behaviors as badly. But some of them were still happening. And some of them were challenging to get rid of, but they definitely decreased and his language was increasing pretty rapidly, he was starting to request things he wanted and needed, which he had never done before or hadn't done in a long time. Right.
Mary: And what was it overwhelming for you to learn online?
Kelsey: Actually, no, I really enjoyed watching videos and learning. I liked watching examples. I think I'd read so many books. And I even read your book and it was like, I still don't know what that looks like in real life. I still don't know what that looks like for me. I would try bits and pieces from all these books, and it was like just so frustrating because it was worse. I mean, it was like, OK, well, this book says, this works. It certainly does not work. And so obviously he's, you know, he's never going to learn. And I would just send me into different panics, and I didn't find that about watching the videos online because I could just rewatch over and over videos of you sitting at a table teaching and just emulate what you were doing. And so that was helpful for me.
Mary: So, so you basically had to become an expert, you know, at least for your own kids. You were. You were kind of forced to learn. I mean, you said you were angry, you were angry at, you know, the the people who made your way at the clinic that wasn't working on the right things and were not, you know? I'm not trying to, like throw people under the bus and, you know, but there are prerequisites to teaching a child colors, and there are things you can do besides putting a helmet on a two and a half year old, you know, because if we're going to use a helmet on a two and a half year old, then what's he going to be like at age 8 or age 16? And we really have to do the do the type of ABA and collaborate really well with parents in order to have each child reach their fullest potential. And so I'm always on that soapbox. But what do you say to parents who are either in denial on wait lists or just want to leave treatment to the professionals?
Kelsey: Yeah so, I don't believe in leaving treatment to the professionals, ever. Even if I'm the professional, don't leave it to me. I, you know, I believe in you as a parent. We're the only ones who are there. We're the only ones there all the time. You know, your provider could leave. Who knows? Government funding could change. Insurance could leave. And what are you going to do? I mean, if you're you know. If you don't have professionals and you don't know what to do in high stress situations or you don't know how to teach your child, I mean, that's a hopeless place to be. And I'm not interested in living in a hopeless, hopeless place. That's not that's not where my best me lies. But, you know, I understand some families can think, well, I shouldn't. I just want to be mom or I just want to be dad, or I just want to be grandma or whatever you want to just be. You can be. I mean, me and my children have great relationships. Me and Brentley, especially. And I think that's because we just have a really good working relationship, both in therapeutic settings and outside. He trusts me and and I think without building the kind of teaching in structural control we did, we wouldn't have that kind of trust. And we have a ton of fun teaching and learning doesn't have to be. You know, upsetting for the child, it shouldn't be. It should be just part of your day and it's part of typical parent's day. So why shouldn't it be part of our?
Mary: And you've learned to be your kid's best teacher and advocate for life. So. Yes. So OK, let's move on really quickly to your younger son, Lincoln, who at some point started to show some signs of autism or some signs that were concerning to you. So can you talk quickly about when he started to show signs that were concerning and what those signs were?
Kelsey: Yes. Lincoln was a very late walker, so that was definitely on my radar, pretty early. He didn't say a lot of words, he said a lot of sounds and he but he didn't say words until close to 18 months. So that was concerning. And he was very on edge a lot. He and he was very obsessive about balls, about certain things. He would get very obsessive. And to the point of hysterics. So that was between 12 and 18 months and then closer to two. He started tantruming about 80 percent of his day, six seven hours. I mean, it was insane.
Mary: So it sounds like his signs were a little different than Brentley's.
Kelsey: Yeah. Way different, I would say Lincoln is more high functioning autism if we want to put our he's very, very rigid, he gets very upset, very quickly, but he has a ton of language. But for a long time, he also didn't use it to speak to people. He would tell you what he wanted, but he would yell it at the fridge or at the wall or at his toys. And no one really knew who he was talking to. He didn't understand to come to adults, which was another big red flag.
Mary: So when did you put him on a wait list?
Kelsey: Then I put him on the wait list when he was 13 months old. Mostly because he's a sibling, which is a risk factor. And because it was a year wait.
Mary: Yeah, you knew it would be a year wait. So you would you wanted to get in the queue as soon as possible and siblings? You're right.
There was a study a few years ago that showed that if you have one child with autism, the chances of a sibling having autism are 19 percent. So that's really high. So you you were concerned enough to put him on a wait list knowing that in that year. But but that year was different for you because you already knew how to teach Lincoln, right?
Kelsey: Yeah. Yeah. I already knew mostly how to teach Lincoln the levels of tantrum that Lincoln was experiencing were just way out of my scope, that's for sure. It was insane. But I knew how to teach them language. And so I did do that to the point where I was actually concerned that I taught them too much.
Mary: Because he surpassed. He surpassed Brantley with this language, right, even before he was diagnoses. Oh yes, he is.
Kelsey: Actually, he actually scores as advanced in language. He's three years old and he scores much higher than that in language testing.
Mary: Wow. So, so so you before this point when when you were concerned about Lincoln, you had taken my early learner course and then my intermediate learner course. And then two years ago, I started my toddler course for parents and you right away were very interested in helping me. You volunteered to be a community manager and sent me some videos of Lincoln and did the steps with the other parents and in the group. And yeah, and you would say, like, I mean, I could see it on the videos that you sent me, like the the step by step guidance was really helping Lincoln even broken down to a very basic level.
Kelsey: Yeah, it was. I mean, the games with Lincoln were quick and it was much easier knowing what to do with him.
Mary: Yeah, and so you waited how long to get Lincoln diagnosed, was it a year like you expected?
Kelsey: Yeah, it was a year, yeah. And at that point, his tantrums were pretty out of control. And yeah, he got diagnosed when he was twenty five months old, the same age as Brentley was.
Mary: Were you given a diagnosis of like moderate, severe, mild, high functioning, low functioning? Did they put any kind of... for Brentley or for Lincoln? Did they give you any kind of gauge as to where they were on the spectrum?
Kelsey: For Brentley, they definitely gave him a diagnosis of severe classic autism. He failed everything pretty, pretty seriously. Lincoln, they did not give me a level. They actually could not give full assessments and a lot of areas because he spent close to two hours flicking a door handle and screaming and kicking the door. But the things they saw in that moment, the fact that he never came to me for comfort or even luck to anyone else in the room for like, you see what I'm doing here, which is what a typical toddler looking for attention or looking for something might do. He was just. Just doing it. No one really knew why, and so they didn't get a whole lot of assessment out of him.
Mary: OK, so I know you got you got some start with my courses and you're still heavily involved, but you did all along, you were trying to get professionals involved and that goal of, you know, maybe not 40 hours because the twenty two thousand dollars a year wouldn't cover it, but now, but at some point you did find some, some more help, right?
Kelsey: Yes. Yeah, I I was lucky that I found to be a behavior analyst in your courses, not locally. But she was able to get on the approved list of providers so that we could use her on our team because Brentley's behavior was pretty severe. And at that and and Lincoln's behavior got pretty severe. And it was, although I could teach them language, they both definitely needed some individualized support. And so I was very lucky to have connected with her and to learn that there was a whole network of behavior analysts doing distance consultation, which I didn't even know was a thing.
Mary: Right. So so she could help you just on the computer through Skype or Zoom or something like that. And yeah, and she could actually watch videos and give you individualized support. And that's where, like the online course, you know, I created it. I know my three online courses are really helping people turn autism around, but legally and ethically and even time wise, even if it was legal and ethical. I can't give you specific advice about Brentley's headbanging. I didn't even know he had headbanging the first 60 days of your course because like, even for me to advertise my courses is not for kids that are banging their head 100 times a day, you know, that's really severe. You do need somebody individualized. And everyone would benefit from having a behavioral analyst on whatever, you know, child's case. Certainly, the online courses aren't enough to provide that kind of intervention. So, yeah, so what kind of? How much and what kind of therapy are both your boys getting currently? And how much of it are you doing?
Kelsey: I'm still doing ninety eight percent of it. No. So right now they are both. Lincoln is actually a daycare with no one to one support. He only has consultations with one of our behavior analysts. She writes him behavior plans and supports me in supporting him, mostly with extra practice at home so that he can take that to different environments. Brentley He goes to daycare with a full time, one to one support who is trained by our other behavior analyst, who is local. And he has been great and he goes in and he trains her on how to teach Brentley throughout the day and to support him in daily living skills at the daycare and interacting with peers. And then once he comes home, I'm supervised by my behavior analysts that I met through your courses and she takes care of all his language goals. So basically, I have behavior analysts and then I do all the implementation for him. He doesn't have a therapist outside of me.
Mary: And so that whole 40 hours a week or twenty five hours a week of individualized one on one time, you've basically replaced that with providing your boys with with good ABA during most of their waking hours. Yes, but it's not as intensive as you know is recommended.
Kelsey: No. And you know, sometimes I do talk to one of my behavior analysts and I say, you know, maybe he's not gaining skills quick enough. Maybe we do need to rethink those. Maybe. But at the end of the day, the skills we've taught Brentley and continue to teach Brentley are changing his life. You know the. Me being able to help him in the community, me being able to go hiking with him with no leash and harness a lot of the things we've taught him are just things to make his life and my life easier. You know, there's no reason to sit and teach rote skills, which I think is probably where a lot of programs would have gone with Brentley. So it's been really invaluable to me to have a team of strong behavior analysts supporting me because that's how my kids are making the most.
Mary: And are you feeling? What's your stress level and your happiness level when compared to what it was two years ago when you were, you know, had Brentley at the clinic?
Kelsey: Yeah, it's definitely. I can't imagine where my let's just say I'm still stressed every parent with a child with autism is stressed to some extent. I mean, the rollercoaster is stressful. I mean, watching your child doing great one week and watching them maybe not do is great. The next week is is challenging. I'm not going to say it's not stressful, but. The fact that I know what to do if a head banging episode happens, the fact that I know how to if we go to the community, I know how to prepare situations to stop things, I know how to deal. If something happened, I can't imagine my stress levels. If I had no idea. I don't even know how parents survive. I don't know how they survive. Day in and day out, not knowing at least some of what to do, and so and the nice thing is when you're feeling stressed or frustrated with something is I can say, OK, well, I know how to teach them, let's just teach it to. And that's really helpful.
Mary: You've also made the transition to becoming a professional in the field. Can you know, I know we don't want to take up too much of your time, but can you just briefly talk about like why you went to work and what you do and.
Kelsey: Yes, sorts of things. Well, as a single mom, it was never an option to stay home forever, although I loved that time with my boys, so I had to go back to work. And the company I now work for brought in a really strong behavior analyst who has who does verbal behavior. And I actually learned about in your courses. And so I decided that it was a good time to go back to work. And I work as a behavior interventionist with children, with autism and and different disabilities supporting those behavior plans. Luckily, the company I work for believes in heavily in parent training and actually train parents to be their best teacher. So there was a company I felt very aligned with, and I wanted to help more kids than just mine. I wanted to show parents that there was a better way that the way that all the children in this community were being taught previously. Wasn't necessarily the best way, and we could really make a difference, and I wanted to be a part of that.
Mary: That's great, and you do have plans and hopes and dreams to become a behavioral analyst one day, which I wholeheartedly support. So what advice do you have for parents of young kids on the spectrum? Just a couple pieces of advice, like if you were in that state back in Alaska, what what are a few things that you would tell yourself back then?
Parents of Children with autism can reduce stress by Learning how to help.
Kelsey: Don't wait, don't wait, because it doesn't matter what you wait for, no one's going to do it for you. The earlier you can learn what to do to help your child to work. So to make your day easier to teach language, do it early. My second piece of advice is never. It's hard to say never trust the providers, but never trust them so much that that you just hand it off to them. I hate to say there's no handing it off.
Mary: You need to become really the captain of the ship and stay the captain of the ship.
Kelsey: Yes, you need to become the captain, the ship. And so that's and really enoy your children. If you need to take some time for that grief, then take it. But the end of the day, our kids are kids. They're really awesome kids. And you know, learning what you can to help them gives you hope, and it gives you hope that it's OK. You know, he has challenges and that sucks. But I know what to do and I can help my child and I can teach my child. And that hope carries me through every day. And I think if I had that hope sooner, there would have been a lot more better days of me enjoying my child earlier in his life.
Mary: So you're having a lot of hope, and it's hard to imagine, you know, five years or 10 years from now. And do you even ever go to that place where you're trying to envision what Brentley and Lincoln are going to be like?
Kelsey: I actually don't. I live my life and their life one day at a time, one moment at a time. I actually don't even really make goals for the year. I mean, I tend to make this is what's happening in our life right now. This is what needs to happen to make them happier and me happier. How are we going to get there? That's where I live in my life because I don't know what's going to happen. You know? Nobody knows.
Mary: So nobody, even outside of the autism world, knows how their kids are going to end up. And so that is a big lesson. I think we autism moms, learn early on as is, you know, hope but not expect, you know, you can be very hopeful and you're your goals and everything may change over time. But I think you've you've shown, you've shown me, you've shown everyone that you can single handedly begin to turn autism around, and we don't know if that's turning autism completely around for either of your boys. Yeah, but it's turning autism around so that you and your boys can lead happier, less stressful lives. And yeah, so I think this was just a great interview. I'm really happy that we're able to spread the word that moms and dads and professionals can and should really work together and that we can really make a difference. So thank you so much for your time.
Kelsey: Thanks for having me on, Mary. I really enjoyed it.
Mary: I don't know about you, but I loved hearing about Kelsey's journey and getting her insights for other parents and professionals for the show notes. You can go to MaryBarbera.com/3 (MaryBarbera.com/175). And if you would like more information about my online courses and community, you can go to Mary Barbara.com/workshops to sign up for our free workshop today, and I will be back next week for another episode of Turn Autism Around. Have a great week. If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop, where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism. And you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/Workshop, for all the details. I hope to see you there.
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