#100: What Does Turn Autism Around Mean to You?
I talked with parents and professionals for this episode about how they’ve used the tools from my courses to help children with delays reach their fullest potential. Peter, Julie, and Michelle all have children on the spectrum, but they’re all in very different stages of life. Julie’s child has just graduated from college, while Peter’s son is in his tween years, and Michelle’s daughter is only two. For all three parents, the Turn Autism Around approach has helped their children and clients move into new stages in life.
Julie is both a parent and a behavior analyst, while Ally is a BCBA-D. They share with me how they’ve used my courses to teach other parents how to be advocates for their kids. Because I’ve been in the online education space for so long, Ally turned to my courses during the Covid shutdowns so that she could improve on her own telehealth services. I feel so honored that my books and courses are such a vital tool in her own work.
One of the big gifts of being in the online space is that it allows parents to find their tribe no matter where they’re at in the world. Connecting with others can help you feel less alone in your own journey, and it can let you see the full gamut of experience in the autism community. I’m so excited for 2021 and the new opportunities it will bring for our community. I hope you’ll continue to join me as we continue to Turn Autism Around!
- How autism mom Michelle was able to use my online course to increase her daughter’s vocabulary by hundreds of words during the Covid shutdown.
- The challenges that autism dad Peter is navigating around as his son transitions into puberty.
- About the work Julie has done in theater, even during social distancing and state shutdowns, to help children with autism learn and grow their social skills.
Attend a FREE Workshop!
— MaryBarbera.com/workshop (Sign up for a free workshop online for parents and professionals)
— #078: Autism Success Story with Michelle C.
— #083: Telehealth and Autism | Interview with Telehealth Professional Dr. Ally Patterson
— The Experiences of “Autism Mothers” who become Behavior Analysts: A Qualitative Study
Transcript for Podcast Episode: 100
What Does Turn Autism Around Mean to You?
Hosted by: Dr. Mary Barbera
Mary: You're listening to the Turn Autism Around podcast, episode number one hundred. Yay, we made it to episode one hundred, which I'm so excited about. I started the podcast back in January of 2019. So we're approaching our two-year mark. And today I have a special panel presentation.
Mary: We're talking about what Turn Autism Around means. And I have on the panel Michelle C, who is a parent of a two-and-a-half-year-old. I have Peter, who is the parent of an 11-year-old. Julie, who is the parent of a twenty-four-year-old, as well as a behavior analyst. And Ally, who is a behavioral analyst at the doctoral level. We are talking about their journeys and what autism means for them. So it's a great discussion. Hope you love it. Thanks for one hundred episodes. I hope you've enjoyed them. And I'm looking forward to our next hundred episodes, too. So let's get to this special interview with our panel presentation.
Mary: OK, I'm so excited to have my first panel on the podcast, so I'm super excited. So welcome, Michelle, Peter, Julie and Ally, thanks so much for your time tonight. So let's start with I would just like to have our listeners get a glimpse of your journeys with autism, with ABA, the Verbal Behavior Approach and really the Turn Autism Around approach. And what was life like before and after you learned about it and kind of where your journey started and then just a couple of minutes each. So let's start with Michelle.
Michelle C.: Hi. First of all, I wanted to thank you for inviting me here today. I'm very excited. I have a two-and-a-half-year-old daughter who is newly diagnosed with level one autism. And we first started noticing delays, which was around 18 months old. She did some toe walking. She wasn't up to par with language. She had a couple of words, but they weren't reliable. And then she slowly lost them. I didn't hear another word with meaning until she was twenty-five months old. Until after I started Mary's course. So along with the language regression, also, she stopped looking at me and she stopped responding to her name. She didn't point to things or laugh as much and more. She didn't engage in the way that she used. So it was a pretty significant regression that autism was not something that was on my mind right away. But she did end up being diagnosed.
Michelle C.: But before I got the official diagnosis, I did end up finding Mary's course online, fortunately, and this was during covid. So when we suspected that she had a problem, we did see a neurologist and he suspected autism. He gave us a preliminary diagnosis so that we could receive a certificate. So we signed her up for everything in February. And then once March, everything was shut down and that's when I started Mary�s course. So Alena had very few words, maybe Sue and again without meaning. And it was kind of just an echo. Fortunately, once I started implementing the strategies for Mary, of course, she started the floodgates, just opened single words starting to use to word phrases. I mean, this all occurred within a few months. So her progress was just remarkable. So, I mean, now she's in ballet. She goes to ABA five days a week. She used to not even be able to transition to going to go through a doorway. And now she can walk through the door. I mean, she can now she goes places that she's excited to go to new places and she's excited to meet new people. And it's just really fantastic.
Mary: That's awesome. And how old is she now, Michelle?
Michelle C.: She is two years eight months. She'll be three in February.
Mary: Wow. Yeah, it is some remarkable progress. And Michelle was on a solo podcast, episode number seventy-eight. So MaryBarbera.com/78 And I have that memorized because it was even amazing podcast for me. It wasn't really planned to be a podcast. Michelle just started posting great stuff in our Facebook community and I was like, I need to talk to you. Going from two words to one hundred eighty words or five hundred words or whatever she did was just like really great progress. So I sat down with her and we turned it into a podcast. So that's really your journey is even more elaborate than that, but. That's a great start. So we have Michelle with a two and a half year old daughter. Now let's hear the journey of Peter, who's in Australia, and let me hear kind of how you fell into the autism world and how you got involved with ABA and the Turn Autism Around approach.
Peter: Hello, everyone, so my son is eleven. When he was born, I kind of suspect something was going on but wasn't sure what it was because he wouldn't, wobbly. He was crying, he didn't have the eye contact. So in the back of my head, I knew there was something that was different. However, we didn't get the official diagnosis until he was three and a half. And with the official diagnosis, that's when we started looking at different therapies. So like myself, like any other parent, well, Google autism. Google autism therapy. And the first we started with the flow of time and we started with there was a lady here who did not have therapies where we tried that. However, we didn't see any progress.
Peter: So we ended up doing some more and came upon Mary's course, and that's when the ABA world opened up to us. With the course I started doing ABA courses in Australia and ABA therapist, and we turned to a local ABA therapist in Sydney and we started therapy with her. And with that he made progress. We did the tabletop. We did the shoe box and all that. At the time I was working at the same time.
Peter: So it was difficult being a full time parent, working as well as a child who was diagnosed. But we managed to hire therapists to come and provide therapy for him. It worked for a while, but then began to make progress. Someone has to give up the time to spend in therapy full time, so I ended up giving up work and being at home with him full time. So that's when we made really good progress. So however, he's not conversational, but he can get by with his needs and wants. So his self-help skill is really good. He cooks for himself. He dresses himself. He brushes his teeth.
Peter: So my aim for him is to be as independent as possible and to be as happy as possible. So we're on the right path. Every day is a challenge still, there's always new challenges because he is becoming more self-aware. With that, it becomes, you know, different challenges in terms of growing up into his teen years. So I'm looking forward to that. Yeah, it's a good it's a bit of a journey. It's never ending journey and there's always something new as Mary will attest to that.
Mary: Definitely so. Yeah. And I actually met Peter in 2017 when I went to Australia to speak in Melbourne and I think a couple of the members from my community were going to Melbourne to the conference where I spoke, and so I was then traveling to Sydney. So Peter came and met me for, for some tea and some chat. So unfortunately, with the world wide shut down, I haven't really gone anywhere for a long time, like most people, but it's great to have a community in it. And how do you feel being like one of the few dads in our community? Because it seems like it has a lot of moms, grand moms and female therapists, not a whole lot of dads. So are you do you feel outnumbered there?
Peter: Oh, look, you know, it's well, parents, right, when it comes down to it.
Peter: You know, we all parents and we all want to do the best for our kids. Someone has to, you know, make a decision to be the one leading. And it happens to be me, which is fine, you know, and whether your dad or your mum or your grandparents, the community and yours to welcome. So, no, I don't feel left out at all. So I feel quite blessed to be in this community.
Mary: That's great. Thanks, Peter. OK, so let's move on to Ally.
Ally: Thank you so much for having me on again. It's good to talk to you again.
Mary: Ally, you are on podcast. I don't have your number memorized, but you can find the full podcast in the show notes. We'll put it on the show notes. But yeah, quickly tell our listeners about yourself. In a shortened version, that would be awesome.
Ally: Yeah, so I think like a lot of behavior analysts, I did not have a straight path exactly to ABA. So I was actually training to become a researcher in developmental psychology. And I love many aspects of developmental psychology. I'm glad that I had that background, but I was exposed to some ideas about intervention that just didn't really make sense or that weren't necessarily effective. I was always really drawn to the philosophy of behaviorism since I was an undergrad. So then when I was working on my PhD, I needed a summer job and I was already curious about ABA. So I started working with this little boy who has autism. So I was working on his behavior technician under a BCBA. And I just I loved that kid so much and he made such great progress. And so I'm not a parent like you guys, but I do feel like my path to ABA started with just how much I love being with this little guy and also seeing how effective these strategies were for him.
Ally: So I kind of changed my whole life plan to focus less on developmental research and more on intervention. So I became abusive. And then I did my dissertation on an ABA topic. And then when I was after I graduated, I was working for a couple of different organizations and never really found the one that was right in line with my values. So I decided to go solo. And so now I'm working for myself, mostly consulting with parents, but also managing a few more comprehensive ABA programs. And I really found Mary's courses as covid was happening. As the shutdown happened, we had to transition to telehealth for a lot of my kids. And there is this one little guy in particular who I mean, he just don't have any language. He was banging his head on the wall. They couldn't get him to sit down and eat. It was just really rough for these for this family.
Ally: And I was so worried that I thought COVID was going to be kind of it because he was two. It was prime time for intervention and wanted to really get in there during this critical period for him. So I decided to take Mary's course thinking she has really good tips in her book for how to communicate with parents. So that's why I signed up for the course. And I use a lot of our programs. But more than that, I use her language. The way that Mary explains the concepts to parents has made so much sense, not only to me, but to these people. And the kid that I mentioned, he's doing so great now. I was like, we started in April and he's got no words, lots of problem behaviors. He's got two hundred words now. He speaks in short sentences. He plays with his toys like the kid does not stop talking these days. So I'm just I'm really grateful and happy for the work that you are doing.
Mary: Mary, that's awesome. It's great to see. When I started these courses, I started back in March of 2015 with my first online course. I knew the techniques worked that I implemented with the children, that I saw my clients. I wasn't one hundred percent sure was going to work with people that I didn't ever meet and never looked at a video, never gave them any feedback. But to see the gains that Michelle's daughter made and Peterson made and the gains that you're making as a BCBA-D which means you have a doctorate to you think like, well, what could this little online course really provide. But it's great to hear that it is definitely a big tool in your tool toolbox now. And I think with the publication of my book in March, it's just going to really get this this approach out to many, many more people, which is exciting. So great. So last but not least by the person I've known the absolute longest out of the panel is my good friend, Julie T.. So, Julie, you want to tell us about your background?
Julie T.: Right. So my child, who is now an adult and is about the same age as Mary's son. So Mary and I met quite as our children were maybe in elementary school. So but I would start talking about how I got into the world was that I before I had children, I had a master's degree in psychology, and I was actually working on a PhD in community psychology. But I kind of it wasn't it just wasn't quite right for me. It wasn't the right fit for me. And then after having my second child was born and she had a visual impairment and but still I even with the visual impairment, it just there seemed to be some other things that weren't quite right. Like when she would we'd be at the bus stop and she'd just take off running and not look back or just sitting in the corner, turning the pages, looking at books over and over again. I was just like, this isn't quite right.
Julie T.: And I kept asking people, what's going on here, what's going on? And it took a long time to get an answer until almost four when some of the visual impairment, another mom said, you know, did you ever look at that? What was then called PDD. So and then we went back to the developmental pediatrician who several years before said absolutely there was not autism there because there was a point because she was pointing. But I had taught her to believe because I was. So anyway, so then I got quickly, I found some ABA parents who kind of steered me towards getting a private consultant and getting ABA therapy going. And at that time, so we had a 40-hour week program, which I think is similar to what Mary had with Lucas and worked really, really hard for a whole bunch of years in getting language going.
Julie T.: So some of the things that were involved in the program where we had to have, I remember they told us before they started, I had to get 400 pictures of like 20 different items, 20 different categories each. Each of them had 20 items in them and pictures matching objects. And so I had to have objects and all those pictures and it was really overwhelming. And so the kinds of things that I had to do in that kind of program were really it was a really a lot of work and very intense and not something that everybody would really be able to do. So that was just those are just some of the thoughts that I had about that at the time.
Julie T.: I mean, later, Mary was my mentor and I got my BCBA. And Mary said to me, yes, you can do Julie. You can do that this. You should do this because I really hadn't considered doing it until that time. So some of the obviously Mary's techniques were used on my child because we were past that point at when Mary developed them. But Mary and I were sort of in contact working together during the whole time that she developed them. And we have a strong, strong agreement about some of the approaches that are used in terms of being very, very positive that we don't want the child to be crying. If the child is crying, something's wrong. And some of those things are not how ABA was traditionally done. And Mary has a very unique approach in that it's very, very positive, which I really strongly, strongly agree with. So those are those are a couple of more thoughts.
Julie T.: So my child now is an adult age. Twenty-four graduated college this year and then, of course, got launched into Covid. But is living semi independently. I mean, I don't sleep, we don't sleep in the same house. I come every day and we learn cooking and cleaning and all the things that you have to learn to be an adult. We did because we were working so hard on the academics. We didn't always we didn't have the time to do all of the things. So we didn't work as much on some of the self-help things like cooking at a younger age, and now we're catching up, catching up and doing that now, and I think that's one piece of advice I'd give people like, don't worry, you can't do all the stuff. Maybe it's going to take a few extra years to finish teaching some of the some of the skills. And that's really OK. That's all right. You're not going to be able to you can't fit it all in there because the demands are so much to of all the things you have to teach.
Mary: Yeah. And when you were saying about how you had to gather all these materials and stuff, it triggered me to remember, like we used to bring in a consultant and she'd only come like once a month, a whole day. And we pay her some like a thousand dollars or eight hundred jobs was a lot of money for her to tell us what to do. And then my husband would be like, OK, she leaves, we pay all that money. And then you have like 15 hours of work to do. It's like that is kind of strange. And then you come to realize like, oh my God, this is frightening. Like, nobody really knows what they're doing. I mean, the consultant did she was good. But when she moved down south, I got a different consultant. Then I was just like, oh my God, this is frightening. And that's when I became interested in becoming a behavior analyst and I would recruit other gung-ho moms and dads to pursue it, because at the time you needed a master's degree in something and then add the ABA certification, then we kind of specialized in that.
Mary: Julie and I worked together closely in the Pennsylvania Verbal Behavior Project, which is now called the Patent Autism ABA Sports Initiative. And I think there was a time when a third of our consultants were parents of kids with autism. So Julie was one of the subjects in my qualitative research study, which is called The Experiences of Autism Mothers who become behavior analyst. Because what we've seen and we can link that in the show notes, but what we've seen and we've seen it on my podcast episodes so far is it's very common for parents to become behavior adults, for them to become advocates and all kinds of things, because it really does change your life and change your world view. So I think it's very common for parents to pursue other professional roles.
Mary: And we can maybe we'll have you back, Julie, with other BCBA parents to talk about some of the overlap, because that's a whole nother topic. But you also have a lot of experience with early, early intervention. And also, I think because your daughter. Was so high functioning, getting into college, graduated from college, you also really had a unique way of looking at like I remember you telling me, which Lucas is at the opposite end of the spectrum in terms of language. And you were you were teaching her like pop stars and all kinds of tacts for what kind of in style with girls that were 12 or 14 or whatever. And you were very much on the cutting edge of like there's so much that has to be taught.
Julie T.: There's so much language that has to be taught. So much that had to be taught. And still we and I still have spent many, many hours creating new programs from that time around age 11 or 12, social skills programs, theater programs. I can't even tell you how many new how many programs I've initiated and collaborated and sort of spun off because we needed more, more, more things. We needed more. And it wasn't in a lot of the programs are ABA in not in the sense of able work ABA, but in terms of in more of BB of looking at motivation, looking at what's going to motivate the kids. So when we do a social skills group or theater program, those kids or the young people want to be there. They're excited to be there because we're using their favorite stuff.
Julie T.: We're using their favorite cartoon characters and their favorite video games, and we use it all their favorite stuff to get them to learn perspective taking and to learn how to perform on a stage or even on a zoom play. And they're excited and they're motivated and they want to be there. So that's just that's a whole notherother piece.
Mary: Yeah, it's very complicated and needs to be individualized, but at the same time, it can be pretty simple. And I think that's what I'm trying to do, is make it as simple as possible. And then especially for professionals and parents who really get into it, into providing individualization, is taking it to the next level, but never forgetting the base of it's got to be child friendly. It's got to be positive, it's got to be motivating. It's got to be as stress free as possible for both the child and the family. Otherwise, it's not going to be maintained. OK, so why don't we talk about what turning autism around means? Turn autism around as the name of my podcast. This is Episode one hundred, which is a huge marker. Turn Autism Around is also the name of my new book. And my new book is focusing on helping parents. And it's an action guide for parents of children, one to five years of age with signs of autism, with or without a diagnosis.
Mary: However, since there's chapters on talking tantrums, sleeping, eating, potty training, desensitization, it's going to help kids like Peter's son. Potentially there's going to be things in there. But when you try to go real general, I really want to get to the little kids who don't even have a diagnosis yet, because I feel like those are the people that are really waiting in line and without anything. And the more we can simplify things the two-year-old Mark or the three-year-old Mark, the better these kids are going to do down the road. But no matter where you're at, parent or professional, what does turning autism around mean to you? So, Michelle, why don't we circle back to you?
Michelle C.: Yeah, so turning autism around to me now that I've taken your course, I've taken all three of your courses actually for parents. So I believe turning autism around means helping children with delays reach their highest potential, whatever that means for that child. I had no idea that might reach the potential that she has. Even now, she's not even three years old and she's nearly conversational, not quite yet, but nearly there. So reaching your highest potential is, I think, what turning autism around means. And that's truly what my experience has been after taking your courses.
Mary: OK, great. So, Peter, what does turn autism around mean for you?
Peter: So turning it around for me is the hope. I think it means that as a parent there are tools and techniques out there that you can help and that gives the parent confidence going forward that you can impact a child's life in the way whether you decide to be a full-time parent myself or involving your child's therapy or intervention. Either way, it also helps knowing what questions to ask the school. If you don't have therapists that help you come to the house and help. We know they can help you. You know what questions to ask and and be involved in the intervention.
Peter: For my child, it's more about living a happy life, whatever that might be. He's not conversational, but you do mean that he can cook his own food and do his own shopping if possible. I think that that's a great achievement. So I hope that the child can live the fullest life to the most potential. I think that's what it means to me.
Mary: That's great. OK, Ally, what does turn autism around mean for you?
Ally: And I think for the professionals, the way that we've got to turn autism around is what Mary's all about, which is the parents have to be involved. I mean, we need to get parents being the driving force, the best advocates for their kids. And we need them out there advocating for treatments that are evidence based, but that also work for their lifestyle. And they know best what works for their lifestyle. So I've always had the best outcomes for kids with the most involved families. And I actually had a parent tell me a grandparent, actually. She told me kind of early on, she was like, this isn't just like a therapy, ABA it's a lifestyle.
Peter: Yes, it's every day.
Ally: I thought she really nailed it. And that's true for the kids I've seen make the most progress there. Their families kind of adopt it as a lifestyle. But I don't want to just scare anybody listing off like that. It's you have to change your whole life because it can be a really gradual and fun process that your kid can love a lot. And for these kids, I think the main thing that I would want to turn around for them is giving them the chance to fully participate in their relationships, because I think relationships are the best part of life. And there's that really sad myth that kids with autism don't want to have social relationships. But of course they do. Everybody does. We all do. So I just I want to teach them the skills that help them participate, like asking for what they need, expressing how they feel. And beyond that, I think there's also there's a peace for everybody, not just parents or professionals, about acceptance. We can teach other people how to include our kids and how to stand up for them when they need help.
Mary: And I think that's great. I do really want to empower the parent, and I think that is the best thing professionals can do, is empower the parent to become the quote unquote, captain of the ship and when I hear about professionals who are like, no, you can't come in to see the speech therapy session, that's our policy. We bring the two-year-old back themselves and they're even if they're screaming, we know best.
Mary: You sit in the waiting room. It's like that's not really going to help. That's not going to help the parent. That's not going to help the child. That's not going to help the parent professional relationship or the child parent relationship or PR. the new therapist. And so if any of that is going on in your world, I think you need to really look at it and have professionals attend a free workshop that I do or listen to this podcast, because it doesn't have to be that way. And the more empowered the parents get, I think the better. So I love that. So thank you. OK, Julie, what does turn autism around me for you?
Julie T.: Well, I agree with a lot of what everyone else said, so instead of repeating that, I'll say it different. It's something else that I was thinking as they're talking, which was that when a lot of people told me that ABA was a bad thing because it was going to sort of turn my child into this sort of rigid robotic nonperson. And for me, turning that around is, is it having your child grow up and really be themselves? If they want to have purple hair, they can have purple hair if they can make their own choices. If they had a lot of the kids that I know that I've known since they were really young, some of them are gay, some of them are trans, some of them are they have their own relationships. Some of them drive, some of them are working. Some of them are not working. But they have their own lives and they're able to make their own choices. And that's huge.
Julie T.: And I also put it like I have just a thing I say to myself is like it then if we if we teach them these skills, then they're going to be able to go to Disney World, not just the actual Disney World, but they're going to be able to experience all the fun stuff and get all the reinforcement as opposed to being cut off from it. So if a child is banging their head and they're not toilet trained, we can't take them to Disney World.
Mary: Right. So you're not just talking about Disney World on their own, but you and I do say that if they can't request their wants and needs some way vocally or with a device or with a system, if their major problem behaviors aren't near zero. If they're not toilet trained and working at least on a schedule, it's going to be really hard to take them on a plane or take the child to or even the adults to restaurants and those sorts of things. So, I mean, I know there are people in our community that don't agree with ABA.
Mary: And when we, us three behavior analysts on this panel, we know that the science of ABA, there's nothing to disagree with. It should be you reinforce the behavior. It's going to go up. Whether I reinforce it or the environment reinforces it. The principles of ABA are surrounding us all the time. So whether you believe in it or not, it's happening. And we just want to make it where it's positive so that each child can reach his or her full potential. So trying to make them or we're trying to get them to have what they want. Right. And we're not trying to change the personalities. We're trying to get them to be as safe as possible, as independent as possible and as happy as possible. And we want the families to be happy, too, because Julie and I know for years we were making those two hundred flashcards or whatever we needed to do. But we also have one life. So we don't want to be like fully entrenched. I mean, we all are entrenched to some degree in the autism world, but we want to also reach our potentials. Go ahead, Peter.
Peter: ABA changes as your child grows. With myself being having an eleven year old son changing, whose needs are changing. So that ABA has to change with you. So now we use enforcements like a bicycle riding, go on trains. We use it to develop his language as well, or go shopping. Ask him for his favorite chocolate treats, ask him for his favorite ice cream, so people think it develops as a child develops, it changes as a child changes. So it's very doubtful in the form that we use it every day. Even if you're not autistic, it's about reinforcing positive behavior. It's about learning as well.
Mary: Right. And any situation can be assessed, broken down. Like Lucas, for instance, a couple of weeks ago, he was exposed to covid. He needed a covid test. A couple of months ago, he had to start wearing a mask. You know, these his day program where he was doing pre-vocational work closed down. You know, all of these changes, like you're saying, Peter, we need to change with him. So test, how's that going to go? Since I had already experienced a Covid test, I knew kind of what it was like. I knew that we would have to have what we call a promise reinforcer, which is a reinforcer after the procedure, a strong promise reinforcer. I knew that because of haircuts and desensitization towards other procedures, that counting would work well. I knew that somebody else watching the test, having a model of someone else getting the test before him would work. And so all of these ideas, we put it together, we planned it. I wasn't even there. And he got the test and did well.
Mary: So whatever level your child or adult child or clients are at, planning reinforcement, breaking steps down to get the child through whatever difficulty is what we're all about. So I. I love all of your responses for what turn autism round means. I don't think there's you know, some people have kind of a knee jerk reaction to turn autism around. We're talking about recovery. You're talking about not everybody gets all better. And of course, my son needs twenty-four seven care. And there's a whole gamut. And Michelle, you certainly don't know what your daughter's going to be like as she gets older. Even Peter being your son is at eleven. You don't know exactly how things are going to turn out, but what you do know is you have knowledge, you have resources so that whatever you confront and your name, I like to say this to your names, not out of the lottery for more stuff to come out of your name, to be called more stuff and always more stuff.
Mary: And just because we have autism doesn't mean there's not going to be cancer and death of a loved one and all the other stuff that can certainly add stress. And so but I think what I'm teaching and what I'm trying to do in my life is try to be as resilient as possible and live my happiest life and my purpose driven life to. And I think all of you here are also trying to do that. I mean, we're all just trying to live our best lives, right. So speaking of best lives, part of my podcast goals are for parents and professionals and people with autism to be less stressed and lead happier lives. So what are your self-care tips or stress management techniques can be anything. Why don't we just go in the same order? So, Michelle. We'll start with you.
Michelle C.: Sure. And I said this in the last podcast that I participated in. But sleep is, I think, just very important. It's very easy as a parent of a child on the spectrum to stay up all night and worry about any little thing. But just allow yourself to sleep. You're not helping your child or yourself if your sleep deprived. It's just I can't recommend it enough. Very simple. Also, just remember that you know your child best. Mary told me this in several instances through threads on her Facebook page.
Michelle C.: I had questions about some things that my ABA clinic was doing and that it was recommended to me to just remember that I know her best and make sure that you tell your child's therapist exactly what you want their programing to look like based on how well you know your own child. I think it's really easy for a parent who's new to autism to be bulldozed into thinking about a certain way of therapy is correct. But fortunately, I took most of Mary's course before I put my daughter in action in therapy, and I was able to really be an advocate for her because of that.
Mary: How do you respond, Michelle, to parents who say, I just want to leave it all to the therapist? I just want to be the parent. I just want to have fun, normal life, normal things, and I just want to leave everything to the professional.
Michelle C.: I would say to them, you can still have your fun, normal life with all of the fun things involved. But you also need to understand that it is your responsibility as a parent to make sure that you are engaging your child for as much of the day as possible. And you know where your child's strengths, strengths and weaknesses are. Your child isn't in ABA all day. I mean, that's like saying I don't want to teach my child anything because they go to school to learn things. You're still responsible for teaching them. So I would say that both are needed.
Mary: Yeah, I agree. I agree. And I mean, your role as a parent, especially with a young child, is to teach them, to teach them to eat different foods, to talk. Most kids don't need intensive teaching to learn to talk, but some kids do. And you can get the most bang for your buck if you learn the techniques, so you become the captain of the ship and then get therapists, babysitters and everybody, that's going to kind of be on the same page, I think that's really important. I love it. And I love sleep, too. People say, oh, gosh, you get so much done. Do you ever sleep? I sleep eight hours a night at least. I'm a huge fan of sleep as well. So thank you for that. OK, Peter, what are your stress reduction tips for us?
Peter: My stress reduction tips is not perfect. OK, so don't try to make everything perfect. I'm trying to live with that there will always be issues. There will always be challenges. And I just know that it doesn't always work out the way you planned. But in the end if you're on the right path, that's wonderful to, how can I say it? Because those new charges, you won't completely cure autism. You have to learn to live with it. And there's always the new challenge. So my stress is don't stress.It is what it is. It's go with the flow. You have the knowledge and the technique and the information there and just use it as best you can.
Peter: And to know that what you're doing is, you have good intentions. I'm telling myself that as well, not to stress, not to make everything perfect. It'll never be perfect. If the child is happy, if you live a wonderful and fulfilling life. I think that's what you can hope for now.
Mary: Just put one foot in front of the other. Yeah. I've never been a perfectionist and I actually am really grateful for that because I think if I were a perfectionist, I would have a lot more stress. I remember being on a on a phone call when Lucas was diagnosed and he was like literally taking a bottle of water he'd find on the coffee table and he would just dump it or soda or whatever. Meanwhile, I'm on the phone with my friend who has two little typical girls, and there she's screaming at them. You're going to get time out for going up the steps with muddy shoes. And I'm like, OK, Lucas just dumped a soda on the family room sofa. And like, you know what? If I were that high strung, I would be like a mess. Because, you know, when Lucas was little, he'd get a hold of markers and stuff and it's like we just needed kind of to move forward. OK, now we're not going to have markers laying out now. We're not going to leave open cans of soda on the coffee table and just kind of move forward so that the next day we don't repeat the same problems over and over again. But, yeah, there's always going to be new challenges. I love that, Peter. And just better done than perfect for sure. Yeah, OK. Ally.
Peter: You have good days and bad days.
Mary: Ally, what are your stress reduction or self-care tips?
Ally: Yeah, I think for the parents and the professionals, we've got to lean on our communities. I think the people I've met in the autism world are some of the most kind and helpful people. I think we really are the group who likes to help. And there's your local communities and then there's also tons of stuff on Facebook. And Mary's groups are wonderful.
Ally: I think, you know, this is the reason why we're always emphasizing these social skills with our kids is because we know when times are tough, when you lean on so. So lean on your people and also look at your progress. I mean, look at how far you've come. When I'm feeling like I'm stuck with somebody or not getting anywhere. I like to go back and look at where we started and see what we've accomplished.
Mary: And that's true. Yeah. I love that. And part of my courses is as you guys know. But just to start out with a baseline language sample and two baseline videos. I know for Michelle that was really super important because we're actually writing up her daughter's progress because it was so amazing and and trying to get it published in as a case study. But looking at, oh, wow, we started with two words and now we're up to know. In her case, it was hundreds of words. But even if you start with. Two words or zero words, and you get ten words. It's progress, and I think the more you can measure that more you have before and after or monthly videos or monthly language samples or weekly language samples, you can see progress. And I think that's highly motivating for the parent and the professional. Yeah, OK, Julie.
Julie T.: I guess I would say, look, for your fellow travelers. There's going to be a lot of people that you meet along the way and it's sort of what Ally said. But a little bit more is that you may lose some people because you don't really have as much in common with them. And if you over the years where your child grows, you may not meet the same friends that. Like some of the people who have typical kids, you may not have as much in common with because maybe your child isn't participating in football or cheerleading or whatever, you know, whatever the activities are.
Julie T.: And you may develop, but you might want to look for developing a whole new set of people. And so over the years, I've developed that I have so many people that I've known for the last twenty five years who've been on the journey with me. So they're kind of like fellow travelers. And sometimes at certain points you need people who seem to be closely aligned in their journey. So you find parents of kids who were functioning similarly, pairing up, but sometimes that doesn't matter anymore because sometimes you're all part of one big family and sometimes you have a lot in common with more in common with somebody who's kids somewhat different than yours.
Julie T.: So and how things turn out, the long run is different anyway, as we all know. So I just feel like I'm really glad that I made all the relationships that I've made because, you know, and then when it came down to it and we didn't we couldn't have a graduation party, everybody got together and made a big drive by. And we have that memory. We have that drive by instead of the graduation from college that I've been working for, that we've all been working for so many years.
Mary: Yeah, yeah. And I think the whole world is on Zoom now. But you know, I've been on Zoomsince the very beginning of it and it's amazing how, you know, like I did meet Julie many times in person and I met Peter once in person in Sydney. But you know, Michelle and Ally, I've never met you in person, but I still feel really close with you because I've interviewed you. We've talked. And it's amazing how close communities can get. Back when Julie's daughter and Lucas were diagnosed, there was no Facebook, there was no social media. There was just the beginning of AOL email. And it's amazing how there are definitely some issues with social media and issues with Facebook and that sort of thing.
Mary: But you can really find you can find your tribe, you can find other people in very similar situations. And I want to thank you guys for coming on tonight, helping me with an episode. Hopefully it's going to be helpful to people. I think it really shows some diversity with very young child and 11-yearolds. Twenty-four-year-old, parent professional, professionals, empowering parents. And I think the more we as a field move forward in this approach, I think the happier we'll all be. So thank you so much for your time tonight in coming together to talk about turning autism around. And I'm so excited for 2021 with my book coming out, I think the word is going to spread more and more. So thank you for listening. Thank you for being here and telling your stories.
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